HAVING A LIFE - Sex, Relationships and a Chronic Illness

THE HEART OF THE MATTER...

2012-01-10T08:22:00.000-08:00

No news is not really good news in this case. For almost six months I have had a very hard time getting in the mood. I have been worrying a lot about the numbness that I experience in the nether regions, yet at the same time a little bit of touch creates a lot of pain. It's clear that the less aroused I am able to be, the more it hurts. That one corner just won't stretch and ends up hurting like hell. We do try regularly but I seldom get much out of it and just have to give up. Sometimes it works if I go for the toy right away. Needless to say, all this has been deeply distressing. Am I simply taking too many medications that affect me that strongly? Am I not attracted to my husband any more?? Well, I don't respond to the toys either so I don't think it has anything to do with my husband, except maybe to some degree the fact that we have been bickering a lot... we are now trying a new and more considerate approach to each other, however.

Well, the other day I seem to have come up with an answer. It's really something I've hinted at before. It just seemed so obvious this time. The past two months have been very arduous, as I've had to do a lot of work on the house so that we could have a more pleasant Christmas with my mother staying over for quite some time. Thankfully, a little money came through and so we got a few things from Ikea and some floor paint to start the process of painting the ugly floorboards. Obviously, having to attend to the festivities was very tiring and I felt very exhausted. I did however have a few days here and there of proper rest, while my body actually told me that I just had to sleep a lot. My schedule was all screwed up due to all the events - getting up early on certain days and staying up late on others.

When all of this was over I slept a lot over a period of about three days. This means I had some natural sleep in the morning and my body felt so heavy I couldn't get up until noon or even later. On day one we tried to have sex but I couldn't get into it and the mere thought of sex made it feel as if energy was leaking from my stomach... On the second day I felt more energetic and got some things done before we went to bed to try some bonding - it was a bit earlier this time. Things actually went fairly well about half way, and I was able to connect my mind to my vagina. Then I suddenly felt very exhausted and had another experience of "energy leak". My conclusion was that all that really is the matter with me is deep, relentless exhaustion, and I am only very gradually able to catch up a little. I'm still struggling after years of extreme stress as well as a major relocation and a demanding wedding. Of course, with this kind of condition the catching up takes much, much longer than it does for normal people, and my age (45) doesn't help.

The next thing is to decide what to do. I already do qigong before going to bed, it seems to calm me and lowers my pulse. I probably need to start meditating some time in the daytime, as soon as I can after dragging myself out of bed and having my strong cups of jasmine tea. I will try and find a routine (boy will this be difficult as I am always in a hurry once I get up around noon), and I will try and focus my meditation on the two lower energy centres. They are situated somewhere in the pelvis and just below the navel. That's where I sense emptiness or contraction when I am very out of energy. The idea is to try and enhance this centres. It may sound a bit new agey but in reality my ideas are based on very old Eastern wisdom. We can't afford any Tantric practices which doubtless do the same, so I will just have to improvise. I'll let you know if anything happens.

MY BEST ADVICE

2011-08-22T06:02:00.000-07:00

Recently, my husband and I celebrated our first anniversary. So a year of wedded life has passed! It has been a year of marital ups and downs, a trying time indeed, yet we don't regret having chosen to do this. As we are really broke and I had been very exhausted the week before, I wasn't sure how exactly to celebrate it. I couldn't think what to get my husband. My husband did get me some roses and wrote some lovely words on a card, and we had lunch at an Indian restaurant. It was a gray, dull day, so we didn't feel like going to the beach. I suggested we try some "bonding" for a change.

Medicine wise, I had been taking Mirtazapine (15 mg) for a little while as a sleeping tablet so that I could give the quetiapine (Seroquel) a rest. I had some pills left over from years earlier, so I did this without consulting my GP who (in spite of being very sympathetic) is quite clueless as how to manage the insomnia. While this worked out quite well (though I also had to go for some Temazepam for full effect), I felt very numb in the nether regions. In the end it didn't matter too much because we were very busy at the time and I also had a terrible rash in my bum which made me feel very unsexy... I then went back on quetiapine and quickly tapered off the other stuff. I had the initial side effects from it; restless legs and and sleeping deeply and for very long.

On our anniversary we thus went to bed in the afternoon, and lo and behold, I felt a rush of sexual energy for the first time in months! Our time in bed was successful in spite of some annoying irritation in the labia and a bit of anxiety about the outcome of our efforts after such a long period of dry-up. I didn't last long as usual when my body is eager. Afterwards we lay in bed for a while and in an hour or so I said half-jokingly that it would be great to have another orgasm. I decided to get one of the toys out to see what would happen... and it worked, just like that. I thought I was well over the times when two orgasms in one day was possible. This gave me some hope that I can have a more normal life... and it was the best anniversary gift for my husband!

The next night, my sleep was scanty and though I still felt a tingling sensation in my vagina when he held me and we talked about sex, I was too tired to even want to try. The following night, I slept 12,5 hours and felt quite interested in the prospect of having more sex... unfortunately my husband didn't quite have the energy and stamina for it - it ended abruptly mid-way though it felt good to have him inside. I obviously had more general sensation and body awareness than I've had for a while. After a while I grabbed the toy and while he played with my nipples, I really got going. I found it relatively easy to get into the right frame of mind and kept thinking, "I want to feel alive!". If that was all I got out of it... it would be important enough. It's so easy to forget what that feels like. And I do have a duty towards my partner to try and stay in touch with life.

I guess I have been very exhausted from an unsettling summer and trying to be supportive of my husband's projects. On the other hand, quetiapine can initially, when you start taking it, make you sleep a lot. All I can say is, it's wonderful to get lots of sleep and I feel so very different. The good news is also that quetiapine, as I have suspected, doesn't lower the libido.

I would say that the first thing that people need to take care of somehow if they want to enjoy sex is the sleep. The other thing is that it seemed to work much better when started early. You should try and have a day of no work and worries of a practical nature, have a good day together and have sex reasonably early in the day when you've woken up but haven't started to get too tired yet. You should make sure you have eaten a substantial (but not very heavy) meal some time before in order to support the physical energy. Generally speaking, you should take care of your energy levels before anything else (well, apart from the sleep).

I would recommend that you do daily exercise, including aerobic work out for your stamina and cardiovascular well being. Most importantly, do meditational Tai Chi and Qigong as well as gentle stretches in order to increase body awareness. I recently discovered a way of stretching muscles in my lower back, and there was a rush of energy down my legs. I was lying on my "spikes" (chi mat, bed of nails) on the sofa, with my feet up on the armrest. I lifted up my bum and tried to find the stiff area, gently pushing that part upwards. I have also tried some mindful twists of the lower back, lying on my back with one knee reaching across the other leg.

There's a simple exercise you can do to increase your energy. Move your hands further apart and closer in front of your belly button. Just keep doing this slowly and feel how energy builds up between your hands, as if it was a ball. If you don't feel anything at all, it means you are really run down. Just keep doing it and do it again another day, preferably every day.

Also, as you get older you might like to pay heed to the time of month and make it sometime after your period. Periods cause me plenty of discomfort "down there" though on occasion when I have had sex right before the period started the sex was unusually good. Halfway through the cycle, my breasts become unbearably sore. Since playing with the nibbles has become more important to me during sex, it goes without saying that it's not a good time for sex. Use some lotion with hydrocortisone in it afterwards to ease some pain that the sex has caused.

If your energy is more or less in place, it will override a lot of physical discomfort. Of course your partner needs to look after their energy levels as well! There is nothing as unsexy as an unfit man (I mean unfit as in not getting enough exercise). Sometimes, as in our case, the other part has health issues as well. My husband has heart trouble and the medication causes him to get tired easily, etc. Unsuccessful sex is not always your "fault". Have a lovely time in bed!

HOW TO DEAL WITH YOUR PARTNER'S EXES

2011-08-18T10:39:00.000-07:00

My husband is a bit unusual in that he has retained or tried to retain an amicable relationship with all the women of his past. He was never married, and there is no question that he knew I was right for him when he asked me to marry him, only a couple of months after we'd met. In theory I have no reason to feel jealousy or worry about the exes, yet in practice it's a whole other story. I will attempt to explain why dealing with them is not as easy as expected, but also what my best advice would be if you found yourself wondering what attitude to strive for under similar circumstances.

Well, there are two ex's in the town where we live. One is a highly neurotic woman who assumed a false identity on the internet and nestled into my private accounts in order to find out all about me. She also used this in order to try and change my husband's mind (having first tried to change my mind about him). She was explicit about having had great sex with him, which is in reality the only reason he was attracted to her to begin with. It was hard to get this out of my mind. Because of this hostility, I didn't felt comfortable about relocating to my husband's place (although he had broken all contact with the crazy ex). She also broke into our house to have a look at it on the morning after our wedding party. This woman has a shop in town and it's one that you pass almost every time you go somewhere. Luckily for me, she has had woes that probably distracted her so we have not had further problems with her. The other ex is someone who rarely leaves this town, and in spite of being quite intelligent, I quickly found that she had a peculiar narrow-mindedness and lack of empathy for the fact that I had moved countries and was struggling to fit in. It seemed that as soon as I set foot on her territory, she couldn't put up with my presence. For months I tried to put up with her evasive manners, excuses and a strange lack of understanding boundaries. She would stay away when I expected her to help me out and intrude when I expected for her to leave my husband alone. for instance, I thought she would help with the wedding but because we were so busy right from the moment we moved into our house, she seemed to have felt "left out" and hurt that we didn't give her enough attention. It seemed to me like a form of silent sabotage, somewhat self centred I would say.

In the end I got the feeling that this woman was probably one of those people who have had no other mission in life than to be mothers and grannies, and that my husband was in fact another one of her "children" that she had to protect from all evil. She clearly had proprietary feelings that I could not ignore or accept, because she was claiming rights to my husband that were intrusive (not least as it was clear she was suspicious of his choices, which he also didn't like). Of course I felt that she thought I wasn't good enough for him, but when finally confronted, it turned out that she thought I was the one being judgemental. I think I can honestly say I tried to get along with her (mainly for my husband's sake), but she disregarded all this. She was after all the one who could never look me in the eyes when we saw her in town. Fortunately this alerted my husband to the fact that I wasn't making up stories about her, and in the end he confronted her about it (as I didn't think it was my job to do that). She gave up the contact with us - quite easily, in fact. Apparently my husband wasn't that important to her after all.

I was strangely traumatized by these problems, perhaps because it was all new to me, but most of all because I trusted my husband's judgement and expected his friends to treat me well. And as my relationship was important to me, I felt confusion and a bit of jealousy as well. I decided that it wasn't my job to try and make the exes feel at ease, but the other way around. If they wanted to stay friends with my husband, it was up to them to make sure that I didn't feel threatened and uncomfortable. I was the wife, the woman in the house - I was in fact the woman in charge! What they probably didn't quite realize was that they had a powerful weapon; the past that they shared with my husband. I am fully aware how easily people can use the "I was there first" argument for manipulative reasons. Don't let them get the upper hand.

Recently I got to meet a third ex, one that my husband spent quite a few years with. I could soon see why things had not worked out between them, One of the reasons was an obvious lack of tact from her side. On the one hand it was reassuring, on the other it was stressful to be exposed to her rather strong and insensitive opinions. I was also on my guard because of my bad experience. Sure enough; she seemed to think that she could tell me how I should feel about exes and even life in general. I obviously had had bad experiences with men and I should become tougher, etc. I really hate it when people make assumptions without even listening to what I have to say. I realized at that point that it's very easy for an ex to make you think you're being very stupid for feeling any jealousy (in reality there are all shades of gray and there are many reasons for it that can be quite complicated) and that you should get a grip if you do feel jealous. Of course they would say there is no reason for you to worry, that being friends with ex's is a very noble way of being and that no one has a right to question the good things they have shared in the past and wish to continue to share. They want to feel they are on top, and strong, successful individuals in spite of not being the one with the ring on the finger. Luckily this woman was open for some discussion and I simply told her off. I didn't feel I had a choice and actually my husband later told me I had done the right thing. I think I will not have to worry too much about this particular person, as she lives a long way from us but also means well generally speaking and understands that she needs to try and be sensitive to my feelings.

Being friends with an ex is not the norm because most of the time there are too many infected issues and feelings. There is also a big difference between getting along with the new girlfriend as opposed to someone who is committed enough to become a wife. The most important thing is, no one has any claims on your husband and you need to draw your line and be aware of your "rights". The house you live in together is now your territory and your husband is an intimate part of you. You are not being abnormal, conventional or paranoid! To me it seems like the only way of dealing with people who can otherwise take advantage of the situation in some way. You haven't picked these people to be your friends and therefore it isn't really too much to ask that they treat you with respect and as part of a package deal. They need to understand that you're not being stand-offish for the heck of it, but for very real reasons including your emotional stability. Trying too hard to be a tough modern person who is beyond any basic feelings is just silly if you ask me.

As someone with chronic conditions, I am very aware of not opening up too much about it where there is a risk of gossip. If they learn about my illness they might for instance start to wonder how we manage our intimate life, and I have no wish to spark any such questions in anybody's mind. By the end of the day, people might not judge me at all and consider me unworthy of my husband's affection. In fact they might even think more of him, and consider that there must be something special about me to make him want to commit to our relationship in spite of the adversities. Still, I worry about either getting drawn into an overly familiarizing relationship with the exes that could be used against me at some point in the future. If boundaries were to get fuzzy, it would create more stress in my life. As I've gotten older, I've become more private and cautious, and aware that people need to earn my trust. I am therefore not going to throw myself into a relationship the way I used to even if my better half thinks it's safe. I think my husband's ability to read other people is excellent but I also think that he doesn't quite get just how complicated, competitive and manipulative women can be. Especially if they don't have a new long-term partner, their envy or lack of consideration could surface any time and cause you trouble and distress that you don't need in your life. Make sure there are only two of you in bed! The same could be applied to your partner's family members, of course, such as the "dreaded" mother-in-law!

My husband once shared a sexual joke on Facebook with yet another ex, and I was quite upset that he didn't think it was of any consequence. I think to him it was an abstract deed with no real feelings attached, so why should he worry about it? I didn't quite know what to say, only that it was insensitive and please don't do that again, because it's just not right. I don't want to have images of my partner having sex with other people in my head!

If you feel differently about your partner's exes, that's up to you. My point is only that it's okay to be a bit protective about your relationship. Respecting your partner's feelings for others is important but that it shouldn't happen at the expense of your own feelings and mental balance.

NO NEWS IS NOT ALWAYS GOOD NEWS...

2011-08-03T08:30:00.000-07:00

It has been a while. It has not been an easy summer, I've been feeling quite unfit with bad sleep and struggling to keep up with life. On top of this, we have not been able to afford a visit home. At home, it has been glorious weather, the ultimate summer apparently, albeit a bit too hot for the unassuming Northerner. Over here on the other hand, it has been cold and miserable, though in all honesty it has allowed me some work (albeit fruitless) on an art blog. We have also been busy exhibiting work, but have sold only small items for almost nothing and so our finances are going to hell. I'm having serious doubts about the value of making art. Who listens, anyway?

As I communicate in my own name I have to put up a front, and this is harder and harder as I feel less able to keep up with the general expectations of society and its members. On top of this, I feel totally invisible these days. Apart from realizing that I am not going to make friends in this place however hard I try, my past success is gone as well, and with the help of my husband I am trying to re-establish some kind of reputation... The market here in the UK is tough and uncompromising. I feel that nobody is interested in what I have to show for, and this is a humiliating state of affairs that I just have to swallow as part of life's learning curve and the ephemeral nature of all things. My GP conceded that I do have plenty to feel low about at the moment.

In fact I have had nothing to write about on this blog because we have had no sex to speak of for months. Every time we try I am lacking in energy or sensation. And it's got nothing to do with our relationship because the "toys", which normally get me going, aren't working either. I have to say that if you have mild vulvodynia, taking amitriptyline and mirtazapine may actually help - they can leave you really numb. I took them for a while in order to sleep, since it occurred to me that they would help for a while. I would do anything to sleep but the mood enhancers... well they are hardly enhancing my mood by making me asexual, are they!

I've been seeing a counsellor at the pain- and fatigue clinic but we have mostly been talking about integrating a happier attitude and some good habits into my life. He wants me to think about what kind of person I want to be, and I established that it would be good to be a radiant kind of person. This, in my mind, lifts off any weird connotations from pure beingness. Yet I have experienced even greater degrees of stress and pressure because of this, as I am failing so miserably in meeting up with any of the expectations of other people.

My parents don't have to suffer from my issues as they are far away at this point in time, though my mother does have certain unspoken expectations on me (this becomes clear when we meet and I happen to be very tired...). My husband, on the other hand, wishes that I wasn't always grumpy and he says he doesn't care if I can't have sex as long as I'm more positive about life and happy in a general sense. He asks me to stop starting sentences with "But...". The counsellor obviously has little personal interest in how I'm doing, yet our talks have been quite profound and we have a great understanding, so I feel bad about not being able to respond very well to all his thoughtful suggestions and efforts. But my sleep medication is no longer working very well and so I've had to use old stuff dug out of the drawer that is more detrimental to me (my GP is on holiday and I refuse to see anyone else). My husband's snoring medication isn't working either. In short, when I sleep badly I might as well not get up and talk to anybody that day. I simply cannot help feeling physically and emotionally so dreadful. Emotionally I feel that it's yet another day wasted, another day that I achieve nothing at all as I'm getting closer to old age. But worst of all, it's another day wasted of our relationship, another day of inability to be a good partner. If I am too tired it means I will most certainly be sluggish and grumpy, and without the shadow of a doubt unable to have sex. My husband says he signed up for this, he knew what he was in for. But I know how much sex means to him.

In all honesty, my husband has been tired as well, as he either snores and gets woken up by me, or just doesn't sleep very well, and I'm sure he's somewhat depressed about our finances as well. My sleep schedule has slipped as usual. It's hard to get to bed on time and actually fall asleep, and I don't want to get up early just for the sake of a principle and then have a really rotten day. So I can't win. I really am trying to walk up the hill once a day, do my work out and even some qigong, but it's never enough. I still feel very unfit and there are no positive changes with my sleep.

I didn't go to the top up day at the pain- and fatigue clinic. After all, they don't want to talk about serious insomnia, sexual dysfunction or dealing with a lack of money. I feel they are more concerned with pain than fatigue, which is not that much of an issue for me. There are some similarities in terms of how you should deal with these things, but I found it a bit irrelevant. So what's the point? I got through their course - let it be enough of the tedious and socially distressing group work.

I guess the trouble is trying so very hard all the time. I saw the pilot movie for the 1973 TV series Kung Fu last night, and had nightmares as a result. Why? Because my life is so far removed from the ideals of good living and being in charge of your own body. Knowing that such a disciplined life that engenders a peaceful, enlightened mind is possible but so unattainable in this existence makes me incredibly sad. And there's the nagging feeling that I haven't tried hard enough. That I could manage my life much better if only I was able to be more organized, motivated and disciplined. What a failure I am!

I'm sorry I have nothing positive to report this time, I'm struggling to keep head above water. Or maybe, if I try really hard - the positive would be that my husband seems to accept my limitations and wishes that I wasn't so hard on myself.

LOVE SIMPLE - A MOVIE ABOUT CHRONIC ILLNESS AND LOVE

2011-07-06T08:20:00.000-07:00

TRAILER

I was very honoured to receive a copy of the American romantic comedy "Love Simple" in exchange for a review, as the producers are keen to raise awareness of a difficult chronic illness. It was a very lovely movie to watch.

The protagonist is a young woman who since childhood has lupus, a difficult autoimmune disease. Seta is of Latin American origin, and lupus is actually more common in women of hispanic origin than in other members of the population. It is not known what causes the body to start attacking itself. In severe cases the whole body may be affected, while in other cases the problems are mild.

Seta, who lives in a simple one-room apartment in Brooklyn, meets a guy, Adam, who lives with his sick father in a very claustrophobic apartment. Adam has not come so far in life because of his parents' illnesses and experiences himself as a looser. The environments are excellent and credible (especially Adam's home with the dead mother's collection of dolls), although one wonders how the Seta is able to support herself as a cartoonist in New York and how she pays for her treatments. The characters in the film are also very natural and well chosen. On the whole it is a very sweet movie. In the film, the characters mature into an awareness of the true meaning of love. Towards the end the movie becomes more interesting when the characters finally start to communicate with each other on a deeper level.

The film evidently strives to be realistic, but this makes it a bit slow; the problem is that there isn't really enough intrigue and zany situations to make it into a real comedy (many of the lines are funny, but the pace of the story could be a bit more energetic). Seta and Adam are reluctant to show who they really are and the problems they have with their lives, but the tangle of lies could have been used more to create more tension, drama and entertainment. But still - love is possible no matter how ill you are!

One of this film's purposes is to create awareness of lupus, but I'm afraid it did not feel that it gave any great insight into what kind of illness we are talking about here. In the beginning, for instance, the doctor could have said a thing or two. On the whole, Seta appears very energetic and there are no scenes in which she is unable to meet Adam because of being to ill. One has the impression that the only worry she has is that she sometimes gets red in the face.

Seta does not appear to have any problems with sex, something I would have expected of a person who takes so much medication (you often see her taking loads of pills from several jars). Of course, I would have been especially interested in how they manage such a big part of their relationship! As far as I know, this would be a problem in severe cases of lupus.

The question I had to ask myself was, who is the movie really for? It seems to me that this might be one of those products that entertain those already familiar with lupus rather than the ones who need to know more about what it is like to live with a chronic illness that requires large amounts of medication and other treatment. Both have trauma in relation to illness and family life, and in my opinion, they get over these a little easily. But there is nothing much wrong with the end, and I think it is a movie well worth seeing. I hope the message about lupus reaches the general public!

As an artist, I feel that the cover is possibly a bit boring. I understand that it reflects the desired realism and simplicity, but I still think it could have been more interesting in order to be more attractive to a general audience. I was a bit distraught that there were no subtitles for the hard of hearing, as you would expect this kind of movie to attract people with all sorts of health issues. The fact that Seta needs to wear glasses instead of contact lenses is made into a big deal, which amused me a little because the taboo of wearing glasses seems such an American attitude!

Learn more here!

FLASHBACKS, SETBACKS AND HOW TO MOVE ON

2011-06-10T06:49:00.000-07:00

I have a theory that it takes about a year to get used to a new situation involving major changes. Moving houses, countries and starting relationships would fit into this category. My first year here in the new country as well as my first year as a married woman will soon be consummated, and I hope the feeling of "trial period" will thus be over soon.

This week I have felt jitterish and restless, as I have a million art projects to take care of but feel shattered and, worst of all, as if nothing is really progressing. We desperately need to make some money, but I feel my hands are tied as there is no guarantee that art is going to get us anywhere, yet I really don't feel that I should take on any other form of work to top up the measly disability pension (which on top of everything was cut down "with a symbolic amount" of about £ 40 because I got married). I don't want for my husband not to follow his desire to lead a meaningful existance through his art, either. We are dedicated to art. Unfortunately, I was annoying my husband the other day because I was being unfocused and jumpy. In the evening I thought I should make things better by instigating some bonding. It was a mistake. We had had energetic sex only two days earlier, and so I was still sore. I felt I was going to fart any minute, so that was a downer. Afterwards I also realized we hadn't felt that close. It's also a fact that if you feel down when you try and have sex, the feelings will be amplified. Much as you are hoping that sex will cheer you up, it probably won't.

As we are together most of the time, we also can never really rely on the sort of excitement people feel when they have been separated for a while. In short, we didn't get anywhere and ended up feeling very flat. That is, until I suddenly broke into tears. Frustration, exhaustion, stress and pressure all welled up. My husband was worried that I didn't find him attractive. I said that obviously it helps if he exercises as he will have better energy to share with me, but generally speaking I'm very grateful that he likes to be physically close and is so warm and cuddly. But now, for some reason, I really regretted having suggested some sex. It seems to have triggered some difficult feelings.

The following day I started off by shedding tears, and it went on for several hours. I was desperately missing my old home and resented that I cannot afford going back to visit. Of all things I actually really missed my Scandinavian kitchen, because it worked for me and I was quite happy to cook and wash dishes in it. In this house, the kitchen is such a nightmare that I only do the bare minimum in it. I refuse to wash dishes because it's ridiculously impractical, so my husband takes care of that. The point is, in the proverbial sense I probably do miss a bit of private space and control over it. I also miss living by the sea and being able to go skinny dipping on a hot summer's day. I had to reassure my husband that I was entitled to missing these things even though I am grateful for my new life with him at the same time. Even though I got some of the things I wanted, it doesn't mean there aren't things that could still be a lot better. Money, for instance, does give happiness. The lack of it is a kind of prison.

I have been talking to someone at the pain- and fatigue management clinic, and it has mostly been about some of the basic attitudes to life. This year has triggered so many complicated feelings about other people, and I seem to have lost some of my sense of identity while trying to adapt to a whole new culture. I have had to admit that I do look for approval in other people. Well, to be honest, it may not so much be a case of demanding approval as being used to having some that just isn't there any more, for a great variety of reasons. Part of it is that times have changed, and that I'm starting afresh within a different cultural frame of reference. I am still not quite sure how I am to give up this negative trend and (besides continuing to do mindful stretches every hour as suggested) start embracing life in a more accepting way. "What kind of person do you want to be?", my counsellor asked me intently. My answer is, that I want to be a radiant person. It seems to me, that it would take care of many tough spots in life. What I mean is that when you truly plug into life, you have more energy and resilience. It seems logical, that compassion, acceptance of others, as well as more enjoyment in life and - of course! - a better sex life would ensue. This regardless of a chronic illness, as the focus is on a better quality life rather than a cure. So I'm working on it... it's not easy but maybe it can be done.

THE COMPELLING POWER OF MARTYRDOM

2011-06-07T02:21:00.000-07:00

Ok so we've been together for almost two years but don't have sex very often. We try at least once a week but very often I have no ability to 'get there' whatsoever. It's disheartening... Of course the issues with my husband's increased snoring hasn't helped, when already I have such great problems with the insomnia... However, a couple of times in the last month or so I have really been in the mood. I wasn't really aware of it beforehand. In the day time I thought, it might be possible... Just a vague awareness. My husband has been exercising more and I'm sure it helps... But as soon as we were in bed after a proper dinner (which gives me stamina) as well as a brisk walk up the hill (which gave my sluggish limbs a lift), my husband didn't have to touch me much before I knew it was time. My vulvodynia wasn't bothering me and I also hadn't had an orgasm for a week, so these things obviously contributed to my willingness. In fact, I get moments when I think I will explode within 30 seconds. Of course it's wonderful to see that at least sometimes, my natural functions work so fantastically well. If I'm in the right mood I also don't feel much pain (but the opposite is also quite true). I struggle to hold back, though, to find ways of delaying my natural response. Trying not to stay with one position or one way of touching for too long, be it him fondling me or the reverse.

The fallacy is, that I then do have an orgasm quite quickly but my husband doesn't have it at the same time because he's too worried about hurting me and so is also holding back to some extent. The problem is that once I had my orgasm I really want to just lie down and enjoy the aftermath. Instead I feel obliged to let him continue for as long as he wants. After I had my orgasm, my lady bits easily get sore and in fact I don't enjoy this part of the session at all. I just hope he'll get on with it but I don't want to say anything to ruin his enjoyment. Last night he went on for so long I had to say, sorry, I really can't any more... he then figured I could help him otherwise. By that time I was tired and had to be honest and say sorry I don't feel like it anylonger. So he pleased himself. After an hour or so I started to have a sharp pain in the abdomen. I am assuming that it's irritation of the bladder, possibly also the bowels. These are common problems with people with fibromyalgia. It went on all night and ruined my sleep... And really, I wasn't even very relaxed upon going to sleep, so that made matters worse.

The moral of the story is, be mindful about how to take care of your own pleasure, because as my husband says, for him it's really great that I am so horny to begin with and he loves that I have a good orgasm (even though I have to admit it gets a bit watered down because of trying to prolong the session and not quite knowing how to yet). Don't be a martyr! As it is, I won't want to try having sex again for a while because I'm too sore. There is no guarantee that lack of soreness will bring about some great energies but it is probably a prerequisite at my age!

HOPE

2011-04-26T03:16:00.000-07:00

Time has passed, but good things have happened. I spent some time in a pain- and fatiguemanagement clinic, and it acted a bit like a retreat. Among other things, many of which were of little consequence to me, we did a lot of meditation, deep breathing, and mindfulness practice in general. When I got back home, I started to sleep in a comatose sort of way. At first I thought it was the medication, but soon I started to feel that healing processes were set in motion and that I was really resting for the first time in a very long time. My life has been pretty crazy due to the relocation and the wedding. But before that, I was incredibly stressed for years because of many other things. I was hardly able to get out of bed in the morning because my body was so heavy... I was really out of it during the day. But funny enough, my libido was a lot better than it had been for a long time. So we had 'wild' sex - well as wild as it gets when you're chronically ill - a few times. It was a relief; I was back on track!

I was trying to stay mindful but I did have trouble holding onto the good habits of doing lots of meditation practice. Life is just so busy, even when I am at home doing art related stuff. We had a guest over for a couple of days and that threw me off balance. I was not holding onto the sleep schedule rigidly enough and didn't give myself time to do the things that slow me down. I didn't even have time to lie on my 'spikes' (the bed of nails) in the evening. I got wound up as I was trying to be a good hostess... my sleep got very disrupted again. Once the guest was gone, we went for a long walk and the next day I made sure to do a sufficient amount of qigong and some meditation. The following night my sleep was a lot heavier. Well, my husband has had a lot of issues with snoring lately, which certainly doesn't help. But when my sleep is quite heavy, I can deal with it better as I am able to drift back into sleep when he has stopped, and sleep through some minor snoring.

At the course, it was suggested that I haven't dealt with the origin of my insomnia, i.e. emotional stress and feelings of not being safe. I haven't known how to deal with them, besides I figured it was only a trigger for a bomb that was ready to explode anyway. Yes, insomnia is part of the fibromyalgia. All the advice about not worrying so much about the sleep doesn't help in the slightest, as I seriously cannot deal with even one night with insufficient sleep. I will go back to the clinic for private consultation and see if there's anything we can do about this. But I also feel that work is in progress, as my general feeling about life is more positive and I feel safer in many ways. I also think that I'm going through spiritual processes of opening up more to all the things that are scary, yet I need to find a way of becoming less vulnerable. Resilience is the word; the core self has to be sturdy and self-accepting, and I need to stop trying to please other people or even understand them as it's stressing the hell out of me!

I didn't feel like sex - again. I felt other things instead, such as tenderness, softness, sweetness. I decided that it was just the way my energy was at the time - a phase and not something I should try and counteract. My vulvodynia has also been worse, it could be hormonal changes as I'm now middle-aged, as well as general irritation of the skin 'down there' (include the rear). I will continue trying to manage my energies and keep them balanced through the meditation practices. I think that's the most important thing. Other than that, I will see about the help that I may be getting from the outside.

Photo copyrighted

ON ICE, WHILE SEEKING SOLUTIONS...

2011-01-10T06:39:00.000-08:00

I was ill with one flu after another, the last one giving me high fever. I'm working hard on getting back to a state of reasonable health. Meanwhile, my sleep was getting worse and worse, and I'm working hard on that as well. I'm due for a stay in a clinic and have to deal with my sleep schedule before that in order to be able to get up early in the mornings. Of course we weren't having any sex during this time of surplus trouble.

I really need to work things out somehow. After some sadness and regret (not mentioning fear of losing my partner) I tried to muster new motivation. I must not give up. It isn't easy but the fact that I am having to work on my sleep schedule, and very systematically at that, is helping me shape up. I also realize that I have to take a thing at a time and not overwhelm myself with change. The first thing is going earlier to bed so that my sleep time matches the Indian Ayurvedic ideas about the energies in nature. I have found that the time of day supposedly propelled by very physically orientated Kapha energy (between about 10 pm - 2 am) could possibly be matched with the first part of the sleep during which we are supposed to naturally spend in deep sleep (NREM). During this time we are detached from awareness quite a bit while the brainwaves are mostly very slow (delta, the deepest state of consciousness). The second part of the night we spend more time in dream sleep (REM) and as it's a lighter form of sleep we easily drift into consciousness during this time. According to Ayurveda, these hours are also dominated by Pitta and Vata Energies, the former supporting the metabolic processes and the latter psychological ones. Presumably, it helps to go to sleep when we are "supposed" to have deep sleep. It sort of makes sense. I seem to need a second round of deep sleep in the morning though, as the quality of my sleep in the night is not good enough.

I've been thinking about energies and how you should be able to affect the state of affairs through energy work. First, I have to sleep better hours and wake up earlier (this could make me feel more relaxed in the mornings also as I wouldn't be in such a hurry to get up before dark!). That's calling for major efforts, unfortunately including quite a lot of medication. I will have to put up with many days of feeling under slept... I don't know how that will work out as I feel really crappy from even just one night with too little sleep. I have to force myself as well as get used to the idea of not being a night owl. Secondly, I need to have better quality sleep. I am hoping the change of schedule helps a little bit. But I also have to make more of an effort to take up energy work such as meditation, Qigong and Tai chi again. I will take a step at a time and psyche myself into these things gradually. In meditation, you could potentially go all the way into delta consciousness, and in theory it could make up for lost sleep. This is by no means easy. The other states of relaxed consciousness (alpha and theta) are nonetheless useful as well as they help you de-stress.

I am also thinking of a more mundane solution, which is to use the vibrator a bit more often. After my illnesses, we've had a bit of sex and I just simply grabbed the less harshly vibrating dildo in order to remind my body of the whole thing. It helped me get going a bit and made penetration less painful because the arousal helps dilate the sensitive areas and make the skin supple. My partner doesn't mind at all, as he understands that the dildo is an aid and not a substitute. All in all I find that more sex is conducive to better sex when you have an illness and easily get in the mindframe of just forgetting the whole thing. The more you remind your body, the better - automatic responses will work better. The more you have orgasms, the more pain relief you gain. The more you have penetetration, the more stretchy your vagina becomes and your less likely to be in debilitating vaginal pain. In this way, sex can become therapy.

All of the above will obviuosly not help if you have no energy. So you need to build up energy as much as you can. I would also say that even though sleep medication can lower your libido, it's better to have drug-induced sleep than none at all or just really crap sleep. You may also have other physical pains. Apart from Ibuprophene gel and Tiger Balm on the muscles, I know of no better pain relief than a good night's sleep and a daily exercise routine even if I have to force myself. Not forgetting fresh air and some daylight! Thankfully, my partner is motivated to help and support me.

PAIN AND PLEASURE - THE NATURE OF REALITY

2010-11-25T07:25:00.000-08:00

The other day I was very wound up. I was terrified of an encounter with medical authorities the next day, fearing that it would all prove to be a great disappointment and of no use to me whatsoever. I fear being put in the category of people who don't know how to manage their pain and their lives. Obviously I'm not managing well enough, but I'm managing quite well nonetheless because I've had 35 years of practice. I don't see that anyone could give me any new solutions that I haven't already tried. Well, the next day I did go to the meeting but I'm none the wiser. I don't know if what they have to offer is for me. I'm just afraid it's all too basic. Rather than having to try and learn new coping skills I'd like to just lie down and be given some relief without having to make any efforts to get it.

While I felt myself getting very anxious and tense, I lay down on my acumat ("my spikes") while my husband stroked my chest. This I do often but I don't always feel any relief. This time, however, the sense of relief was really great. I felt waves of release flow through the body. When this happens, it's a wonderful moment and I don't want to get up. I lie on both sides while he strokes the side that's not in contact with the spikes. The irony is, that it's only pleasurable if I have been very wound up and anxious beforehand. My nervous system responds for a change.

When I met my husband, I had a few fabulous moments similar to this. During sex I would feel knots of tension, maybe very old emotional blocks, open up and spread energy throughout the body. Having had a few experiences like this on my own in the past, I knew that the pleasure could very well be the result of release of tension rather than some "fantastic sex". Apparently this was true because I only had the experience a couple of times and after this, sex was more commonplace. It was quite disappointing, yet leaves me with the feeling that intense pleasure can only come about where there has been intense tension and blockage. As we live in a dual reality, it does seem to make sense that it's only through opposing forces that we can have any physical and/or emotional experiences at all. Whether there are ways of having pleasure without any kind of previous sense of lack or of discomfort I really don't know, but in view of what I know about the nature of reality I find it quite unlikely.

Some people take the whole concept of pain and pleasure within the framework of sex quite far. I can well understand the logic behind SM and other ways of having sex, yet it doesn't seem very interesting to me. I guess the idea of consciously inflicting pain is foreign to my tormented body. My husband who is reasonably well is not attracted by this either, perhaps because it's a more fabricated way of having sex that would counteract the more natural approach that we want to pursue.

As a side note, it can be easier for an ill person to have sex if the partner is well. My husband has been quite unwell all autumn and not only has it made him a bit less interested, I have also not had his manly energy available. I really do need the presence of his masculine strength to get me going. As he's been in better health this week, we've had a couple of non-stress moments when I felt quite responsive to his healthy energy. We also nested in the cosy livingroom on a clean sofa cover rather than repeating the patterns of the bedroom.

Sometimes illness can even help us value the good things in life a bit more. After a period of darkness and pain, the ligth can seem all the brighter. Because I've been ill most of my life and maybe because of the nature of my condition, it's a bit hard for me to see the actual contrast between illness and wellness, or pain and pleasure. The moments are rare but probably among the more valuable ones despite the pain that lies underneath. Perhaps we shouldn't try and covet a pain free life but one that is balanced so that there is a working dynamics between the good and the bad.

CUTTING CORNERS - WEEKS AND MONTHS WITHOUT RELEASE

2010-11-18T11:05:00.000-08:00

Unfortunately I caught two really bad bugs that left me poorly for almost two months. Of course there was no way we could have had any sex during that time. Then, I was away in my home country to do a seminar for a week and naturally my husband had strong urges when I got home. The time difference was obviously hard for me to deal with. When I went away I had to resort to what was left of my stronger sleeping pills, and just about managed. Back home I tried to do the right thing and not take the heaviest stuff, but I was very wound up and didn't get enough sleep. After a couple of days I forced the sleep with quite a lot of pills and in the evening I suggested we go to bed and "snuggle" (making it clear that I meant more than that). My husband said I shouldn't have felt pressured to force the sleep just so we could have sex. Well, only those with serious, chronic insomnia that only the vilest of drugs can beat can understand what it's like to go around like a zombie and feel so totally and utterly incapacitated. Life is hard enough as it is for those who are chronically fatigued; guess what it's like when you also haven't slept enough. I'm well aware that most people don't know what I'm talking about as I've been to a zillion doctors with this problem and only meet with moralist views on taking such terrible drugs. What am I supposed to do about the fact that these drugs can have a reverse effect and create some of the symptoms they are supposed to treat? I have no choice. My nervous system is not going to go to rest no matter what I do (and I do as much as I can to help myself by exercising, lying on my acumat, and even doing qigong if I have time though I admit this disicpline has not worked out for me this year).

I've realized that it might be a good idea to lie there for a while on my own before we start anything (my husband might be shaving during this time) and use a softly vibrating dildo. That will either put me more in the mood so I have a better starting point, or will tell me that it's no use even trying. This time, I wasn't quite sure what the deal was though and my husband joined me a bit early. I was responding to some things but not to others, and it would make no sense trying to explain how or why. I hadn't had an orgasm for many weeks. For some reason it worked better when he was touching my nether parts while I pushed myself against his finger. I was able to find the "good" areas in some incomprehensible, intuitive way and avoid the ones that just seemed numb. I have to say getting into the mood was very hard and I'm already worried about the next trial and error...

I might have been better off just letting him give me a handjob, but I wanted to reconnect a bit more. The penetration was only vaguely succesful in terms of sensation, and eventually I had an orgasm that started off and ended without me actually being aware of any climax. I think we both felt a bit more restful and connected afterwards.

My partner has a hard time understanding why I cut corners all the time. I may be telling him I will paint the kitchen walls but I am not going to be responsible for the mistakes or the general sloppiness of the job. I sometimes do things diligently, especially when it comes to intellectual chores. But practical chores I rather just get over with as quickly as possible. Unfortunately, this is also often the case when we are in bed trying to have sex. I have to make it easy for myself. Lying back and thinking of England is not the way though. It's a question of trying to avoid making it all seem like work.

Why is the orgasm so important? Many experts try and encourage you to think about other kinds of pleasure so that you don't get focused on this alone. Well... I often find that I am not very responsive in any sort of way. I think it's a combination of the fibromyalgia and spinal deformation with their destructive effect on the nervous system as well as the lack of sleep, that makes my body at times very dull. Even a very lovely backrub can feel like nothing at all. It can even feel annoying. So in the light of all the difficulties I have I long for the simple and straightforward pleasure of an orgasm. That's the only moment, if ever so short, that I can feel truly abandoned. Sometimes I feel abandoned when he gives me a handjob and my fanny isn't too painful, but even then I am worrying about the moment when I will lose the sensation. An orgasm is something my body gives ME, in an automatic sort of way, rather than me having to think about what I can do for the body. In general, everything else is some kind of work.

THE BLEAKNESS OF REALITY

2010-10-08T04:42:00.000-07:00

Sex? What was that again? Ah, right, physical pleasure, emotinal bonding, one of the raison d'êtres for being in a committed relationship.

Well, nothing much to say about that. I struggled to have some a week ago or so, because as usual I felt that there were so many comments about sex from my husband that he must be really desperate for it. I wasn''t sure if I had slept well enough to be able to muster the energy, I thought not, and sure enough I had to struggle hard to "get there". "Come on, come on, be good now, just get on with it, try harder, I'm sure I can do it, oh no now it's slipping away, no no don't let it go, come on, come back, oh it's getting there again, yes, yes, that's it, be a good girl now, oh I'm finally feeling the sweetness, oops it's slipping, oh shit now it's gone". I was getting so desperate to feel something gratifying and have an orgasm in normal order that I had to get the really noisy tool out and batter my poor vagina as much as possible to get an orgasm in the end. Needless to say, there was no greater sense of satisfaction as a result and after a night with a very painful fanny I had to talk to my husband about all this. "Have you not gotten it yet!", he says. "You must do it only if you enjoy it. It doesn't matter if we abort the operation half-way! I need fory ou to like it. My comments are JOKES. Why do you take them seriously??". Well, it's a serious matter to me... but we had to agree that this is not a good time for sex. We have way too many health related problems. He has to be on beta-blockers due to his heart problems. They are apparently not serious problems and a simple surgery would take care of it, but it costs too much money. So he's been sleeping badly as well and being tired generally speaking. And god knows what else there is - maybe he has the flu again. He also has to realize that it's hard for me to take any initiatives because sex is not really on my mind and I'm worried about promising him something I can't deliver.

And I am struggling to get into the medical system here, had better luck when rushed to the emergency for severe stomach pains and was given an alternative medication acceptable in this country; spasmonal. It helps a bit. In due time I will have more appointments, but it's all taking time. I'm not doing too well. I am trying to manage on only half of the medicines I used to take for the insomnia and I'm sleeping very poorly. I feel washed out and worry that I will have a burn out soon if I don't get better sleep. So at the moment we are mostly watching movies in the evenings, trying not to be snappy with each other and get into stupid arguments, and generally speaking caring very much for each other. We are broke however and don't seem to get much done in the day time. I struggle with anxiety, anger and fears as well, feeling worried as to what it is and how to avoid being treated with anti-depressants which is the official cure-all for anyone with some concerns about life.

THE CONTRADICTORY SHOOLBOOK RESPONSES TO MY ILLNESS & ISSUES OF FRIENDSHIP

2010-09-30T05:44:00.000-07:00

Today is not a good day, I feel torn apart. I am trying to establish a working relationship at the new health centre, and did get quite a good connection with the head doctor. Yes he's "head" of the centre as well as the one who takes care of nutcases. In my case, the problem is that where I come from they have put me on various pills that are not admissible in this country. They will in fact refuse a lot of the treatment I have gotten because in this country, you can only have the medicines prescribed for particular ailments. He was empathic though, when I wrote him all about my medical history and realized that taking me off drugs altogether is probably not feasible. I have a mechanical problem (the spinal deformation) in the background and there is nothing anyone can do about it. He seemed to think I know best about how to take my drugs, so that I can funtion at all. I feel he believed me, and hope he didn't just find it easier than trying to deal with a lot of documents in foreign. Unfortunately, however, we didn't get as far as talking in detail about the medicines because the appointments in this country are so ridiculously short. When I realized I needed new medicines he was gone on holiday for three weeks.

Instead, I had to see a woman who seemed like she was reading from a medical school book and completely contradicted herself. No records had been programmed into the computer and I had to try and explain my situation with the feeling that she only heard every third word. She basically tried to force me to quickly get off the pill that is "really" meant for psychosis, stay off the sleeping pill every four days, and eventually quit all medication altogether. As I got home I realized she'd only given me enough of the sleeping pill to last me a week. Ok so she thinks I'm a junkie. I heard that one before. She was also asking questions that sounded suspisciously familiar; and yes she was trying to lead the conversation onto anti-depressants. "Oh they probably didn't work for you in the past because you were taking all these other things" she said. To me that sounds like a wild assumption, a desperate attempt to justify the use of the "easiest way out" that the national health board has approved. I got home and ruminated over the fact that in their minds, I should have one really crappy night and day almost two days a week. It is the lack of sleep that triggers the real physical pains, tensions, diarrhoea, abdominal pain, anxiety, distress, stress, depression, lack of sexual appetite, numbness, and so forth. How can they not see this, or at least know about it??? They are so blinded by they own limited experience of what it's like for a normal person to have an occasional sleepnees night. And guess how I slept last night? I had to take double doses of medication, of course, in order to sleep at all. Ha.

Alright, so I need to function somehow and so I need to sleep. And I especially need to sleep and rest as much as possible right now so as to ward off a burn out that could very easily be the end result of an extremely stressful move, wedding and the psychological adaptation that has ensued from being in a different country with different people, away from everything and everyone I know. Keeping me away from medicines at this time could be lethal. But I find it so hard to express these things when I go and see these people, especially those with tunnel vision who are unable to think outside of the box. My husband is going to come with me the next time, since I had to get yet another appointment to rectify all the twarted medical "help" that I was offered yesterday. I also find it extremely offensive that they have to resort to anti-depressants as the only known succesful treatment of conditions like mine. The least I need is less libido. So there are two things at stake when it comes to the sex; anti-depressants will make me into a frigid zombie and so will lack of sleep.

The other day, we threw a party in order to activate the social scene a bit and encourage others to interact with us more since the efforts are not coming from them. I need people, and eventually friends. At the moment I only have my husband and a mother who is on her own in my old town. It's not good. I do find people here exceptionally hard to figure out. Part of it is cultural, part of it is the fact that many are creative people with eccentric ways. It seems that people here have rebelled against conventional ways and gone to the other extreme of showing what they feel. This makes them unpredictable as they tend to be moody and change with the weather. Anyhow, the party was a success but it was incredibly hard work, especially as the oven broke down and ruined my efforts. I was very tense afterwards and as my husband wasn't feeling too good and seemed to fall asleep as soon as we sat down, I didn't want to ask for a bit of a back rub. The next day he suggested some bonding, and I did my best... but I was completely unable to respond and that made him have doubts about himself and his ability to turn me on. For god's sakes, I was recovering from a very stressful party! And now... every day is a test of faith and every day I have to see whether I am possibly in tune with my sexual self. Most of the time, something is in the way. We have had two nice sexual experiences since we moved, no blatant problems to report. That's about once a month. It was some time after I felt a bit better following the posttraumatic wedding syndrome and before we both got the flu.

When will it every get peaceful and balanced? I know I must do more qigong, "help myself" as they say. But when life is overwhelming, it's very hard to find the time for these things. Time just slips through your fingers in the blink of an eye... and you get nothing of any greater value done at all. I also have great trouble in keeping appointments for the acupuncture they have offered me (I never had good results from that but when it comes to the insomnia I felt it might have had some effect), as I get so easily distracted and feel muddled.

Well, I have started singing as this is a very musical town and as long as I stay off the stomach medicine my voice is actually alright. Ironically, they won't give me the stomach medicine in this country anyway. Doc didn't believe I had IBS, assuming it hasn't been diagnosed, and would certainly not give "that stuff". Actually, she asked if I have diarrhoea every day but apparently the affirmative answer didn't mean anything! On asking what she would prescribe she said "peppermint oil". Hm, I didn't ask to see a naturopath. Yeah, yeah, peppermint is good but it doesn't alleviate a real illness and the horrible pains! And here, they don't even have Agiocur (psyllium husk) which is used in many countries as medicine. So, it will take ages to get everything sorted out and I will probably go out of my mind before that. Of course, nobody cares whether I have any quality of life, it's all about politics, money and stupid regulations because "some" people misuse drugs.

MARRIED!

2010-08-28T14:22:00.000-07:00

This is my unofficial blog. This is where I post my embarrassing feelings and experiences and refrain from keeping up appearances. So... I am married. It was the one major event of my life, I should think. Not only have I moved countries, but I have also gone through an extensive process in actually committing myself to a man for life. Let's face it; though I had plenty of time to contemplate before we left my previous home, I am still totally and utterly overwhelmed and unable to really feel anything clearly. I feel way too much, that much is evident. The beautiful events flew by and left me wondering what happened? And all I can think of is how the caterers and the minibus service that was supposed to help people to the venue and back failed us, and so I linger with the negative and not the positive. How, in retrospect, we made a few bad choices because I didn't follow up on my intuitions but put a little too much trust in other people. The worst bit is, that because of my illness I could only do so much, and so I was not quite as much in control as I would have preferred to be. Just a bit more time and I would have corrected a few mistakes made by others... it would have helped me feel more content. Yes, it was a great hype and I fell down from the heights. But it worries me that not only do I feel a sort of postwedding depression that may not be so uncommon, but also keep ruminating over the things that went wrong. Why? I must be crazy!

Just as I was thinking I don't want more counselling, as I know my head by now, I find that I'm neurotically clinging to the negative parts of my experience. It's as if I cannot believe that good things can happen to me and continue to be good, to stretch into the future in a positive way. I'm suspiscious of life, and people. I fear the loss of the good, as nothing good has ever lasted. Or that's how I have perceived it, anyway. It's almost as if I can't see the good properly, or it's never good enough, and it makes me feel guilty. As for people, well you wouldn't believe how many never reported their lack of attendance or didn't show up at all. That's just the topping... At the moment I'm waking up in the mornings with great anxiety because my husband's ex who is also his good friend has been very aloof with me and I don't know how to handle it... it's just that one thing too many. I feel I've done what I could to make her feel comfortable but apparently she has all these sensitivities that I should understand and I just want to scream! I have enough of my own! Why must I always be the peace maker? She made it so clear at the wedding that she wanted to stay aloof, be it for the sake of "fear" of me or just some sort of resentment. And... I am so not perfect. I can't do the things I want to be able to do, NOW. I thought I could sing, and I wanted to express myself through songs so badly. I did it, but was it good enough? Will it ever be? I don't know why I feel like a failure. Is there an answer or is this a deep existential issue without a solution?

I have enrolled with the national healthcare of this new place, and have obvious fears. The circus was so crazy, I had no self-discipline but took as many pills as required to give me some kind of sleep, and that was a lot because the dose that is normal to me was not working. That's all I could do, but it shocked the doctor I went to see. I had to make it sound a bit less bad than it really is or he might have written me off as a drug addict. I have to say none of the ones I saw seemed to think it was my issue (they definitely appear more empathic over here!) but had to point out the problem of appearances. Apparently they won't prescripe the same stuff that I got at home and so I fear... I don't know if the non-drug alternatives they may be able to offer will help calm the nervous system. I don't know if anyone knows and understands what is really going on in my system.

I had to sleep. At whatever the cost. Don't even mention the sex. At some point I had to stop pretending that I was interested and trust that my partner understands that I just can't (though in truth I fear that he will get tired of my "excuses"). I could only just barely hang in there. I have survived; but it's at a cost. I have to process, and it will take a while. I have to find a way of relating to my experiences and a whole new way of life. But I'm married to a great man. We have no money but I trust we can find some way of making some... yesterday he crashed under the burden of the new responsibilities. In time I am sure we will sort it all out and maybe there are solutions at hand. Just maybe.

FEAR OF FAILURE!

2010-07-14T02:13:00.000-07:00

Well, I used to be totally fearless. In reality, I was just completely blocked emotionally speaking. It has been hard opening up that real Pandora's box (the box of beautiful gifts that you can only open at the peril of your life...). Emotions breed fear. I've been caught in the web of fears ever since, and also felt less and less confidence in myself... ;-(. Just like most human beings. That's a period of about 11 years, just before I was granted disablity and discharged by society (which is what really happens).

Anyhow, last night I started provoking my partner about his ex's to ta point where he said he'd just take off and leave to go home without me. What was I going on about? I had no idea. I didn't even really feel anything. Then somehow, as usually happens, I started to have thoughts in my head about possible reasons (I take these insigths seriously - in other words I'm mindful about them - though have to say it was all much easier when I used to write about them in a journal). So... what came up was extreme apprehension that my illness is taking away from me everything I truly want to do in my life.

I already have had trouble motivating myself like "normal people" (or so it seems). My interests tend to come with extreme force if they come, and I always knew I could do whatever I wanted to do. That is, theory. Ha, no one needs to tell me we are beings with limitless potential. I've been hampered due to my limitations. Always being reminded of my limitations and having to obey them for real. For instance, I so wanted to do Kung Fu that I cried for weeks about the fact that I wouldn't be able to. In the end I resolved to take up a course just to try... I got the first belt, but that was it. I couldn't have continued even if I had forced myself through the tough discipline that required energy I didn't have. I sort of got Kung Fu out of my system in a way but I guess it's still a regret. I have accomplished things in my life, but laboriously. I was enthousiastic and determined about some things, and got where I wanted. But that was then. With increasing fear comes increasing fear of failure and inability in general. Don't even get me started on my fears of not being the sex goddess that I want to be!

So last night's issue was about singing. I always wanted to sing but never had an opportunity. Now I have a partner who's heavily into making music as a hobby. In other words, he's good. He expects to play with people who already know what they are doing and so apparently he only gives viewpoints when things go wrong. We had quite nice sex for once as I haven't been able to get into it for a while due to fatiuge, and I thought everything was fine. My fiancée was quite tired but I wasn't too bad, so I took the lead in some ways. He was able to get me going and I took it from there... However, I guess the closeness brought up deep buried feelings of some description. I can't even use fatigue as an excuse though maybe I can with some certainty claim that stress is a factor right now. I haven't exactly been the walking image of patience and endurance recently. I started bugging him about the connection he must have had with his ex when they sang together. He didn't want to comment. I got catatonic. I thought, I can never compete with her or other people he admires. I will make a fool of myself if we sing together at the wedding that all his exes are attending ! He hasn't been very encouraging, just the sort of laconic male "you need LOTS of practice" that is to the point but not very uplifting in a woman's ears. There was a jarring difference between that kind of comments and other really nice things he feeds me all the time, about my desirability as a woman. Why is it so much harder for him to give me praise about other things? I take this especially to heart because of bad past experience. I guess it doesn't occur to him. It took him some time to realize what I need. I just need for him to believe in me, in my potential, because we are so close and I respect his opinion about music. If he doesn't I might as well throw my ambitions overboard (I also want to be good enough and have fears of not managing!). As he pointed out afterwards, we do after all want to do everything together. I think that was part of my fear; not to be able to do that and feel this looming gap between us. Already there's a bit of trouble in that I'm not into the music he most likes to play. He's afraid I'll stop him from doing what he wants to do and I'm afraid we won't be able to share enough.

The other thing was that my medicines make my throat so dry (seroquel for sleeping and Librax for tummy issues). I have practiced singing so much recently, despite not really having time... I feel a rare enthousiasm for this so I think it's something I ought to do. But will my throat hold when it's so damaged? Can I cut down on the meds...? And how about my memory for tunes etc, is it all impaired... am I too sick and old for this..? The knowledge of all my limitations makes the issue all the more pressing and my reactions so much the stronger.

My point being, fears are often complex. You need a trigger, or even many, in order to let them out and deal with them. This ongoing feeling of insecurity about my beginner's voice since I met my fiancée is my trigger... coupled with fears of his memories of other women (okay my self-esteem is quite low now for whatever reason, it didn't use to be - perhaps I just have more life experience, baggage and fears about my illness).

For me, it's deep thinking about what my feelings represent that is the answer. I feel a bit rejuvenated after the unexpected crash down yesterday. I think I was so provocative despite the extreme risk of pissing my partner off for good because I felt so unsure of his full support. I don't think the presence of exes is the real issue though I have to deal with that within myself as well. It seemed that my partner was then becoming more supportive because he understood just how important the performing was to me. He also then admitted that singing together with his partner wasn't a bonding exercise. Well, I admit that was a relief to hear... it could have come sooner than later!

I have no universal remedy for fear. Sometimes it rules for a long time until there have been enough triggers to help dig out the stuff from our subconscious. I don't think we can force it. I don't agree with new agey ways that tell you can just magically decide to be rid of them. That to me sounds like repression (and I've seen that in people a lot too, and boy are they eager to preach their ways). I'm just thankful my partner eventually "gets" these issues that come up every once in a while. Our relationship (love, committment, feeling appreciated despite deficiencies etc.) has brought up a lot of stuff...

THANKS!

2010-07-08T00:05:00.000-07:00

I wish to give my heartfelt thanks to gentlehugs at Chronic Connection for making my day the other day; she awarded me for one of the best of 15 newly discovered blogs. I feel very honoured indeed. The motivation was my ability to cover difficult topics, and I'm glad to receive appreciation for this of course! I am unfortunately unable to reciprocate at the moment as I just don't have time to study all the lovely blogs I've discovered in any detail right now... let alone think of rewards. I sit down and write a bit in the mornings and that is my time of relaxation, but I simply don't have time to read other blogs at the moment (I'm also attention deficit). Anyway, the reward can be seen here. Thank you so very much! (It was my first reward ever).

THE NATURE OF LOVE

2010-07-07T01:37:00.000-07:00

I know... this is a BIG subject. And I'm really short on time. It's hard for me to deal with everything that's going on at the moment on a practical level, and I want to talk about love! Well... it's funny but despite all the havoc in our lives just now the feeling of love popped up stronger than before. Or maybe it's because of all the havoc...

I have never fallen in love with anyone. In the past (though not that long ago) I have been sucked into relationships and learned a hard lesson about love because it just happened as I was in the relationships. I was emotionally immature and had to go through a whole range of emotions that you normally learn about early on in life. I was so closed off until I finally opened up and allowed these things to take place. But it was hard on me; I got very burned out and am still recovering it seems. I don't have the stamina I had only a few years ago. I need more rest and more sleep...

At some point I figured, I guess I'm just a bit different and that in my case, I have to grow into love. I tend to be ultra realistic as well as on my guard, and find it hard to just fall for someone in an instance. When my present relationship started, it was clear that I needed to build up a lot of trust in order to make it work for me. I'm very grateful my partner was so sure that he really wanted me and proposed to me so early on. Deep inside I knew that's what I wanted but I still had a way to go before my heart was going to open up properly... I dealt with lots of issues of the past also, as my partner was very supportive and helpful and intelligent enough to understand the importance of this process. It was safe for me to deal with very infantile feelings that the adult self had buried over the years. I was surprised that so many things came up... so many silly behavioural patterns!

We've had issues of feeling distrusted. He has a tendency to think I'm attacking him when I'm not or sees signs of me distrusting the way he takes care of things when there aren't any. Of course he's not entirely wrong: there are times when I do have trouble trusting him with so many things. There are times when it's hard for me to let go and not be the one in charge. But these times don't always correspond with the times he thinks I'm being disrespectful towards him. He does think I have a bit of "I'll do this, give it to me" way about me that is similar to what my mom used to do to me when I was little. So yes, there's a bit of a battle of wills at times. Yet we talk so much and these recurring patterns seem to slowly dissolve and our handle on things is improving.

My tummy is now better, I don't know if it's in remission or what. But I do think that the pain in the solar plexus area has had a lot to do with all the emotional issues of how to interact with each other. There's also a thing about having to redefine who I am... I think people who are especially important to us have that effect on us. I can no longer be the glum fatalist person I used to be... many things are changing and I feel that I have to shed skins. I feel that I've finished a phase in my life when I was acting out a certain role in order to fulfil a certain part of my destiny. This is now over and I have to rediscover a new self altogether. We shall see how it proceeds and I'm sure I'll come back to this later on. Anyhow, my tummy is doing better and it could be due to feeling less anxious about my partner's weaker sides. I've seen them, befriended them... especially in times of such havoc our worse sides come out. He's seen me and my difficult sides and he's still there for me. So trust is growing. Oh yes, and I've started to take psyllium husks/seeds... It seems to be helping me as it's a fibre that creates a jelly like bulk. I suspect it helps my tummy to be less spastic.

We were in bed the other day. He says he seems to want me more and more as time goes on. He figures I'm more and more a part of him in a very deep sense. I haven't slept enough and have been stressing about not being able to "perform" in bed. But he tries to reinforce that it doesn't matter if I can't do the whole thing. He values cuddles and snuggles and loves stroking my body... It was strange though; I allowed penetration on this one occasion though I wasn't sure about it. I felt great communion and connection though I was not physically strong enough to have an orgasm. Something must have happened because since then the feeling of love in my heart has been much stronger. I had a symbolic dream that told me how little energy I have and how frustrating it is to me, but it also gave me hope in that there is the LOVE. I always say; it takes about a year for me to get accustomed to a new home. It seems to apply to relationships as well!

WHAT KIND OF FULFILLMENT?

2010-06-26T04:28:00.000-07:00

We've been bickering a bit, pretty much the same old... we are both quite opiniated and like to make sure that everyone knows what we think. So we get into these situations where I feel I am not being heard or that my opinion is being respected, and I go quiet because I don't want to argue the way I have in past relationships. Sometimes he does the same, and so it's quite clear we are mirroring each other. My partner assures me I'm by no means being put down and suggest I may have a problem in picking the worst possible interpretation of things he says. We shall have to try and investigate into our patterns a bit more in depth when we have more time to do so, as I feel a bit too overwhelmed to do a very good job at it at the moment. At least he feels comfortable arguing with me, which he hasn't in the past. And I also don't feel as melodramatic as I used to. It's safe to argue, and this is what really counts. I really don't think there is such a thing as a relationship without any form of disagreements or misunderstandings. We all make assumptions and have our own way of doing things. It's not easy to find a path of complete harmony and certainly not at times of such great changes and havoc! However, we do feel we'll be alright.

Strange enough, it does seem as if sex is often a bit apart from the daily interaction. You'd think lovemaking starts in the morning as the Chinese suggest. Gestures, loving words... all those little things that can lead up to a good time in bed later on. But this is not always true. Sometimes people get a real kick out of arguing and have great making up - sex. Yesterday it was neither one or the other, just another day of normal stuff. I was thinking, maybe we feel a little estranged from one another because we haven't had sex for a while. In the evening, I suddenly felt quite interested to pursue some time in bed as my mother wasn't coming for dinner as planned (it's funny how I often feel energized enough to have sex when my mother is on her way, but it's just coincidence because it happens to be a day when I've slept enough and we have cleaned the house). Yeah, I felt it again! Just like that. And so I came onto my partner who was whoosy from fatigue. Oh no, I thought, he's too tired... damn! But it worked out very well. I mean, we could certainly work on our techniques quite a bit more and have more flow, but under the circumstances... well... at least the distractions and tentative feeling didn't bother me too much.

I have read that the majority of women don't orgasm from penetration alone, so clitoral stimulation is very important. This has never been true for me. But since I met my present partner and have had so many issues with pain I have found that clitoral stimulation is even less important than I would have thought. I normally require some to get going, but if my energy is fairly high to begin with it's not very important. What more is, the vulvodynia obviously makes fondling of the vagina into a bit of a chore. On most occasions, I'm almost glad when we can get that bit over with and proceed to the actual penetration. To me, it can be a very fulfilling experience and not as marked by the pain. If he enters very carefully, it doesn't seem to excite the sore spot too much, and so the pain doesn't overrule the pleasure. I always think it's very funny that a rather small bit of meat can sometimes feel so big inside. If you're not in it moodwise, it feels like nothing at all. On other occasions, your partner can fill you up in a very complete way and he will feel the exact opposite which is that he's completely enveloped by you. I gather it's really mostly about energy. It's strange how it works. At the back of my mind, I figured I was more into it because I was soon going to be on my period. Sure enough, it started the next day. It seems that I'm quite susceptible to the monthly hormonal cycle and so there are times when it's not even worth considering sex at all, or it's best to just give a blow job or take a toy out while he fiddles with his fingers a bit.

MEN AND WOMEN - THE MISCOMMUNICATION & A WOMAN'S ILLNESS

2010-06-18T02:15:00.000-07:00

I should make it clear that my partner and I communicate extremely well, and that we respect each other. But these are strenuous times. Who would contest that? Through other relationships and trying to find a way of talking to men online through netdating services I have certainly seen how horribly difficult mutual understanding can be and have been quite distrusting of the idea that I could find someone on my own wavelength. Maybe some other time I'll go back to old writing and put something together. For now, just a few words about what I'm going through right now and how hard it is to communicate these things.

My other half selflessly gave me a back massage yesterday as I am so tense and then we cuddled. There was not much response in my in any sense of the word. The massage certainly helped ease out some of the overactivity in my nervous system but I couldn't feel much at all. The same occurred as my man fondled me. After quite a long time I had to say, "look, I really don't think I am in it enough... I'm very sorry". He wants to know why. He's very good at asking about my moods and thoughts, and that's what I really need in a man. Someone attentive and interactive like that. But then I tried to explain, well, I'm stressed you know... he looks at me disconcertingly and asks why. "You know why!" I said. "All the packing... I don't have your stamina and tenacity, I have a condition... it's very hard for me to wake up every morning knowing there's so much of that to be done. Don't forget how feeble I feel most of the time due to tummy trouble or some other complaint... I also feel very disturbed by the disorder that reigns in the house right now... Then there's the fact that we aren't sure the removal guy is really going to take us on nor do we have a date fixed for the move... I am having to talk to all these people about knowing that most of them will turn us down because we're not a company" (we're trying to get a container as we thought it'd be a cheap option). "The real removal guys take loads of money and add VAT but fail to mention it... If this was a normal move it would be bad enough... but this is ten times worse! I'm going nuts! And every time we go to see about my dress and the ring, it's really stressful... I have to make sure it comes out right in the end... give them precise directions so they will do what we want them to do... it is such expensive stuff, and I care what I will be wearing on my finger for the rest of my life! All this costs so much money - it's more than we have and you keep saying we can't eat! What will we do after the wedding? You keep reminding me not to buy more stuff for the venue when in reality it's not very much... when I said I really wanted to enjoy some of the summer by meeting my friends and stuff, you said we don't have the time to do so!". He looks at me disbelivingly and says, "you know what you said about being negative to your shrink..." I flinch a bit because it was something I talked to the counsellor about because my partner had made a point about it. The counsellor concluded that positive experiences will gradually reinforce a more optimistic attitude about life. I thought we were done with this discussion. "How about looking at it all from the bright side instead? After all, I thought you wanted to move away from here into a new house, and also, you will have a great dress and a ring at the end of this process! And it's not even your money! What is there to be miserable about?"

"So in your mind I should be like the blokes and not care, or just shut up and be gratetful for all the things I get?!" I spat vehemenously. He gets up, and spits back at me "oh that's just so goddamn childish!". I sit there holding my knees. "Okay, I'm sorry I exaggerated, but that's what I hear from you. It's still a lot of money, of course it's all very stressful". He comes to hold me and laughs, "oh you, of course I know what you're like. I'm just trying to help you feel better".

Silence. What do I say next? Is this about me not being able to think about sex, or does he not understand what I'm saying? I thought he knew me better than this. "Okay", I say. "Can't you see that it's not just about being negative? Yes there are some negative elements. But the good things aren't here yet! And in any case it's really more about being stressed than distressed!" I knew the distinction wasn't great but all things considered I'm actually hanging in there somehow! To me it's this enormous feat just to get through a day without crashing altogether. "I feel fragemented, as we say where I come from... bits of me are all over the place. My mind has a hard time holding it all together. I'm sure my energies are quite blocked as well... or something".

"But you're supposed to put all these concerns aside when we cuddle up in bed", he says. "That's what it's for. What has changed?", he asks. "A couple of weeks ago we had nice times in bed". "But honey, that was before it all became so overwhelming!", I protested. "This really is more than I can handle. Can't you understand that?" "Well, not really. This is why we try and do it in bits, and eventually get there", he says. "But I'm not well! I know it's easy to forget, but it's true. And I also would go on and on working it all out in one go if I allowed myself... I have to stop myself from doing that and even that requires an effort. And I hate to say this but even the parcel with all the broken or missing stuff of mine that finally arrived from the ex in the US took a toll on me... I'm trying very hard to push all the difficult things aside. I don't think it's humanly possible to be interested in sex under the circumstances. I'm already being a superwoman by my own standards! I can't do more!"

"No no, it's not about the sex", he reassures me. "And I do understand what it's like for you. I do know you and I don't expect you to do more than what you feel comfortable doing. I was just hoping that you'd have a change of attitude and that it would help you be less stressed out". "But the point is", I sigh, "I can't be any different. This is the way I am. This is the kind of person my illness makes me into. I'm so overwhelmed at the moment that all I can do is just take care of the bare necessities but I don't even feel a great sense of care towards anything at the moment. It's like... well if I can't continue decorating the venue, then whatever. That sort of thing. There are millions of details to worry about... there's nothing I or we can do about that. My nervous system is under a lot of pressure..."

The next morning I wake up from an unpleasant dream in which I was looking for my home in the big city where I used to live. In the dream, I can't remember where it is, or if I even have one. I vaguely recollect having a studio flat in a certain type of building. I want to bring home a waifastray, some guy that needs a bath. At some point he says he's heard that me and my partner are very close and maybe we live elsewhere for that reason. To me the dream expressed mixed emotions about leaving the old behind, because I'm in a sort of limbo at the moment and don't belong anywhere at all. I'm uprooted but not yet settled into the new. I feel a bit lost. I have confidence, yes... but only so far. Every aspect of my life is up floating in the air. I hug my partner who is still sleeping. When he wakes up I tell him that I'm stressed that he doesn't understand how stressed I am. He says, well he did say a while ago that these would be the most stressful weeks ever. I said yes, that's what this is... there's nothing we can do about that. Why was he then talking about trying to make me think differently and that I'm obviously not happy about the good things that ensue? Well, he basically took it back, realizing that it was a probably silly and a bit out of line. He reassured me that he understood me perfectly, and tells me to rest when I need to and other comforting things that help me feel more accepted for who I am. I said of course I am grateful for the changes, but I can't change how I experience stressful situations, only do my best, and that all I want is to be understood. Men want to offer a solution and find it hard to just "share" and sympathize with another. This is the eternal dilemma between men and women, even in the best of worlds.

MENTAL IMAGES RELATED TO SEXUAL FEELINGS

2010-06-15T02:30:00.000-07:00

We were at an opening and I had somehow managed to hurriedly create a rather nice vintage style ensemble. I was lucky the week before because I was quite apprehensive about looking for wedding make up and dealing with pushy salespeople - yet I ran into a really sweet lady who helped me with lots of patience and understanding and even worked an hour over time while the shopping mall was already closed! I ended up with a strange collection of stuff that seemed kind to my sensitive eyes (this is not easy!) and to the fact that my skin is very greasy. I came home and realized that it was all in keeping with a style that I've been working on semi-subconsciously. So maybe henceforth, I'll be wearing more make up and feel more confident with the persona I project in public. With an illness like mine, you never feel quite comfortable in your skin and so these external things become even more important. At least they do to me.

When we got home, I was feeling quite tired as I had not slept well the night before, but my partner was evidently taken by the way I look. So he came onto me while I was still wearing the party clothes and had not even had time to wash my hands. I didn't want to disappoint him so I tried my best to get into it. Well, to be quite honest I didn't want to disappoint myself either but that was less important. We had sex but I realized too late that it was a mistake. The next morning I woke up with feelings of frustration about having consented to something that only made me hurt but didn't give me anything in return. We talked about it and I calmed down. It was yet another reminder for me to be more vigilant and not let these us get into situation like this. My partner certainly doesn't want me to have sex if I'm not into it and was quite distraught. He may say that he likes me "weak and helpless" but it's just a joke. I admit I don't always get these kinds of jokes so they can attribute to me doing things I wouldn't normally do. Back in my mind I thought maybe he got a kick out of me not being active at all. In reality, it's not about submission and being a listless object, it's about actively and consciously alternating between activity and passivity. I don't know why my brain sometimes gets it wrong - I assume it's because of guilt that I can't "perform" when he'd like me to as well as being conditioned to a certain way of approaching sex through TV and other media.

Since then, we have been too busy and tired to cuddle up together. One day, I was hoping for a bit of bonding time since I had slept a lot but he was being distant and depressed. The following day I had had horrible stomach cramps in the night time as well as nightmares about not being in control of my life (yuk, old recurrent dreams...). We have had set backs about the removal companies and still don't have anyone to move us (since we are on a tight budget). Because of language issues, I've had to deal with some of these depressing people. I also had a final fight with the man in the US who allured me there a few years ago and never sent my things back. I got the receit for some of them today after lots of pressuring and having contacted the police. I hope I can start my new life soon...

MIND OVER MATTER

2010-06-01T01:58:00.000-07:00

Long ago, when I was learning about Eastern thought, I decided that mind can be more powerful than matter and therefore, mind is capable of influencing matter to a higher degree than most people would normally regard as possible. This idea is based on the idea of a hierarchy of levels of reality, where the physical level is in fact at the bottom. Mind (and Spirit if you believe in a higher form of reality) is much higher up. While attending to the body's needs so that it can function in this world and contain the mind, one also needs to attend to the higher levels of one's being. One a mundane level, there are practices such as cognitive therapy that help people reorganize the wilful chaos of their thoughtpatterns - all that mindclutter. If one wants to take it a step further one can learn about more spiritually attuned practices that are more holistic and profound. The aim in training the mind is simply to learn to become more mindful and aware of everything that's going on in the mind, the body, and your environment. Observe, and let go of some of the need to control what you cannot control.

In the past, I learnt to meditate, and did find it helpful. For various reasons I stopped doing it but I still know "how to". I entered a phase of extreme emotional turmoil some ten years ago and could just barely hang in there. There was not much point in trying to meditate or worry about practices. I tried to be as mindful as possible, but it was really just an extension of something I've always done naturally. I've always tried to listen to my body and be intuitive about its needs. Mind you, one of the really dense doctors I saw figured I'm just fixated on my body and his point of view was that a centipede cannot walk if it starts to think about where to put its feet! This was not what I was doing. It was more a question of trying to be aware of my body so that I can sit in the right position and change when required, take deep breaths when needed, eat the right kind of food, create my own set of exercises that work for me, and so on. And as it happens, my fused spine has not become more painful over the years as predicted by the doctors. It's only the side-effects of the fusion and deformation that are getting worse. I hasten to add, that I have always felt that I have to work very hard on staying "grounded" and connected with my body. I can't help but think of my astrological birthchart, which lacks the element of earth in it. Who knows? It's as if I have this enormous challenge to learn to take charge of my body and its being-in-the-world no matter how poorly it is. Hm...?

It's been a difficult year but I continue to believe that building up one's energy level is of utmost importance. I have felt much better recently, and I'm not quite sure why. I feel more connected with my various body parts. This has led to two succesful sessions in bed this week. On both occasions I had slept a lot the night before - this is crucial. The second time was just prior to my period, which seems to help (once an intense orgasm even set it off). It was a great relief to see that good, connected sex is still possible! It seemed, that the intensity of the energy within myself and between us was overruling a lot of the pain at least for as long as we needed it to in order to have a complete session. I knew that things were going to work out when some simple stroking of my chest and belly by my partner made me feel some pleasure... I have now learnt that if this is not working, then the sex won't work either. I do have to say though that I could probably have a more intense experience of energy. I hope from now on, things will go uphills...

There is one thing I'd like to recommend to others with difficulties in connecting with their bodies. I have a bed of nails, which is a Swedish invention based on the ancient yogic idea of stimulating the body by lying on nails. This is a foam mattress with white spikes of various sizes. Once you learn to lie on it, you do find relief. If you don't believe in energies then I can testify that it does at least stimulate the bloodflow! I have however found it particularly useful when lying on it in front of my partner while he's stroking my chest and belly. It also works on the reverse. The effect is just so much greater. Try it!

SOME SUCCESS...

2010-05-27T01:46:00.000-07:00

We are in the midst of turmoil, of course. We have a whole house to pack up but are still stuck with all the millions of details related to the wedding. I had a moment to myself when he was at his studio, and as I was polishing some silver it hit me; "this is for real! I am moving away... I am getting married... wow!". It's becoming more real as more and more practical issues are under way.

Strangely, I don't feel half as tired and achy as I did during the winter and my need for daily exercise is not as acute as it normally is. Of course, some of the improvement could be attributed to the manipulation by the osteopath a couple of weeks ago - who knows? Yesterday my partner suggested we go and cuddle quite early. It was just after six, whereas we have had a tendency to snuggle way too close to bedtime when we're more tired. We've been so caught up in being busy with life's practicalities. I felt very connected with my fiancée, appreciative of him and quite open. I felt he was more into stroking me than he has been, but maybe it's just my subjective perception since he says he's always into it. I don't know where the energy came from, but I felt the right kind of energy in the body right away and felt into it myself by him just barely touching me down there. It was a soft, open current in my whole body. This has not occurred for many months. I had some trouble staying focused and was alternating between being in my head with thoughts about practical life and being in the state of connectedness with my own body and him. It felt as if my various body parts were once again interconnected. I was apprehensive when it came to the actual penetration as I knew it would hurt but moreover, I was afraid the pain would overrule everything else as it has done this winter. It went pretty well nonetheless and we had a wonderful time.

"Maybe we should get married", I joked, "we're obviously a match!" I wanted to reinstate that I had not lost interest in him and that there was no reason to fear that we would grow apart. When we were away we had some talk about this and it wasn't funny... Apparently, the problems we've had were not as deep as that. In other words, when the energy is there, we can enjoy each other in spite of my pain. Of course, for me the main thing is that we can connect emotionally and energetically speaking. My partner feels that as long as I am interested in having sex, it doesn't matter how often we have it. Of course the connection also has to be there but understands that sometimes, we just aren't as open as we'd like to be. I can now imagine how easy it is to drift into a state of indifference about sex, especially when you're a woman as women aren't usually quite as preoccupied with these things as men are. It's important to try and prevent that from happening as connecting through sex is an important way of sealing the relationship and one of the raisons d´être of sex.

I have a sneaking suspiscion that some of my problems with pain in the lower abdomen have been due to my bad case of IBS this winter. This issue has improved, but of course we have not had penetration very often and the intestinal disturbance varies a lot. There is after all a bit of a poking of the guts going on when you have sex if your man is not of a small size.

I have my thoughts on cosmic events, collective energies and stuff... things that might affect a sensitive being. Not mentioning the stifling atmosphere in the place where I live. I wonder how much external stuff has made me feel worse this winter. But it's all speculation really.

RELOCATION AND ALL ITS IMPLICATIONS - FOR BETTER OR FOR WORSE?

2010-05-23T05:45:00.000-07:00

These are busy times as we are about to start packing up and moving to our new destination, then get married in style - only limited by budget, of course. We spent ten days at our new place, and I got to process the whole concept of major life changing events... reputedly the most stressful you can ever go through. There were a few things that stood out, the major one being the bewildering issue whether I be able to adapt to this new place and feel at home in my fiancée's house without too much conflict and depression. I am old enough with enough bad choices behind me to realize the perils of taking such a major step (this is a move from one country to another), and I can't close my eyes to it all. I realize we often also bring with us whatever issues we had before we left. However, and this I want to stress; sometimes relocation is exactly what is needed in order to bring our lives to another level.

So... there are a few things that became quite clear during our stay there (I've been there once before in December but this was a very different kind of stay as we were able to camp out in my partner's own house). I was in chock for a couple of days and on the third day I cried and felt very small and overwhelmed. My partner received this very well and it helped me feel better so that the next day, I was already more in tune with the place and its inhabitants. Strangely, I felt more energetic than I thought I would, since I have been extremely exhausted all winter through. By the end of the stay, we talked about the reasons. One might have been that I got better sleep because I was using my emergency sleep pill. It has a tendency to stop working quite quickly, and by that I mean after about two weeks of use. It's however not designed to help you fall asleep but is more of an all-night pill. I suspect that anything like that that really sedates the nervous system is beneficial to me at this stage. I have no medical arguments for this, it's only what I feel. The other thing was the fact that although the futon we were sleeping on was very hard and I would normally have been very achy from it, I actually didn't feel I required the normal amount of exercise in the morning. Maybe it had something to do with the fact that it was a bit wider than my bed at home so there was more space to move around. It's hard to say. We were also moving about a lot every day, with some stress related to getting so much of a practical nature done, for sure, but it wasn't too bad. The last thing was the social atmosphere. People in general are very open and communicative in this community, and I realize it removes a lot of my social anxiety. I have observed this phenomenon in other places in the past. I don't feel that I have to take responsibilty for the way the conversations proceed and how they should end - they always end in some awkward way where I come from and my partner says "it's a whole nation with Asperger's Syndrome". I also felt that people were genuinely kindly disposed towards me. I feel that the mentality of the place matches my own much better than the one I am used to, but furthermore, I feel more support. This is the crucial part.

I went to see an osteopath while I was there, as I do feel that I need some kind of rehabilitation and help in keeping my health better. This will cost money we don't have but maybe with the help of my husband-to-be we can manage it somehow. I have been scared to see how much of my health has deteriorated recently. I have had many severe attacks of IBS while I was reasonably well for many, many years (some steps I took to get better kept me going). I have become quite numb in the vaginal area, as if my nervous system is too overloaded to react at all. I have had headaches that last for days. I have been exhausted to the bones. And so on. I suddenly remembered that a very good alternative osteopath I saw years ago told me I will need treatments once a month for the rest of my life, but I brushed it off as "well I'm sure I can manage anyway". I didn't want to continue trading in his treatments for my artwork... it was getting embarrassing. Now I wish I had not stopped going to see him. What now came to me was the realization that he knew that I really can't make it on my own. He was very much a "seer" though in his own special way, and I think he was well aware that my spinal deformation was going to create more and more havoc in the body. It's a shame he was not more communicative about it - maybe he didn't want to influence my decisions to much.

The new osteopath was in fact very intrigued to see the nature of my spinal deformation and said she hasn't seen anything like it before. No wonder I've felt that I've been on my own! She had a holistic way of looking at things and stated, that it's quite obvious that my nervous system and the whole abdominal area is under a lot of strain. There isn't all that much she can do about the fused vertebrae, of course, but there was a little bit of hope in the prospect of the release of tension in the upper part of the back as well as some possible treatment with acupuncture to stimulate the flow of energy in the lower regions. I have to say that felt quite supported and this gave me yet another boost in terms of the meaningfulness of my relocation to this place. I was thinking just how discarded I felt when I was granted the disability in 2002. It wasn't the disability itself; it was the fact that I was now an outcast that was beyond repair and therefore not entitled to any form of rehabilition. I also moved to a small town with ignorant social people who didn't have a clue what sort of stress they were putting me through with their petty little rules (they made it as hard for me as possible although I am someone who was potentially going to be their client for life). Doctors were bland and most of them were from other countries so communication was difficult. Social life was as good as dead; people were withdrawn and totally lacking in communication skills. I felt very lonely, a real "waifofastray".

In other words it seemed that despite the fact that the town I am moving to is even smaller than the one I am living in at the moment, the social support may be much greater and therefore beneficial to my state of mind and energy levels. Although the osteopath thought my spinal condition might have been a birth defect, I always thought the crash down of my spine was a symbolic reaction to the fact that I received no support whatsoever as a child. My parents were preoccupied with their own problems, I had very little other family and no siblings, and at school none of the adults cared for the welfare of their students. This was back in the 1970s.

My partner and I tried to have sex twice during our stay. In the beginning I was imagining how other women had been looking up at the same ceiling... especially the very mean and disturbed ex who lives in the same town and was stalking me on the internet last autumn when she found out about my partner and me. She's now trying to get people to not attend our wedding. It was hard for me to get all that out of my mind. The first time we tried to have penetration wasn't a blasting success but it wasn't too bad either; I did have a small orgasm. The second time was similar except that my body didn't have the energy required for an orgasm. I was glad we tried as I believe that one must try and keep it up at all costs. This is because of the possibility that the mental attitude will turn too negative and also because the body mustn't stop remembering what an orgasm is like. I have always felt very strongly about this, even when I was single. But it's very hard now, at the moment... I feel like giving up and forgetting all about it but I am now in a position where I simply can't do it for the sake of my fiancée. I have to keep trying. Or should I say, we have to keep trying. He is very much my support in trying to make things better. Sometimes he's clumsy and thoughtless and seems to contradict things I say about what causes stress in me just for the heck of it, and we've had many draining arguments about this lately. But most of the time he's full of empathy and constructive ideas, and reassures me that I'm the person that completes him as though I am truly his other half with the same basic disposition and level of intelligence.

PATRONIZING AUTHORITIES, SOCIAL CODES, FRIENDSHIP... A COMPLEX TRAIL OF ASSOCIATIONS

2010-04-29T03:24:00.000-07:00

I felt my backmuscles tensing and my stomach starting to hurt. Why did I feel so wound up all of a sudden? My partner asked me what was going on - we always ask one another the minute we see a change in the other's countenance and behaviour. My speech was intense and hurried; I suddenly realized I was having some kind of posttraumatic reaction to all the horrible incidences with doctors and social workers that I've gone through in the past.

So... the reason this was triggered was that the doctor who renews prescriptions originally issued by doctors who for some reason aren't present to renew them has been very patronizing towards me in the past. I discovered some vaginal discharge a couple of days ago and that added to my stress about my rather dysfunctional sex life. Last time I had this "vaginosis" the gynecologist told me to get some suppositoriums over the counter. But I found that they had gone up so that a course of treatment would cost 14 euros! This is such a rip off and if possible, I want to avoid supporting such a sexist industry (all female related over-the- counter products cost fortunes!). I thought, okay, I'll just get the prescription for the antibiotics renewed instead. It'll be cheaper and it's sure to work - I really don't have the energy or interest to fuss with some expensive alternative. I don't really want to see the only gynecologist available through national healthcare again because she's very aggressive and opiniated, so she might not even want to give me the kickass medicine I want because of matters of principle...

However, when I looked at the prescription I realized I had actually left it for renewal before but the male doctor who has always been a pain in the ass (he's the head of the health centre, unfortunately) had ignored it and only renewed the other medication that was on the same prescription (things work a bit differently in my country than in others). Anyway, this really got my blood boiling. My reaction was that this was some sexist scheme in that as a man he refuses to renew a medicine for female trouble. The same medicine has been renewed countless of times before but suddenly he wants to take matters in his own hands and refuse me some quick relief so that I can get on with my life and not continue stressing over such a trivial thing. Argh!!! In addition, I had a bacterial infection like this for years and all the doctors (mostly male) insisted there was nothing wrong with me. I believe this is what triggered my vulvodynia in the end.

In other words, I started to feel the same kind of stress that I always feel when people I rely on for help are making life difficult for me. To me the option is, not to seek help. When it comes to friends and acquaintances, I have started to cut cords when I don't feel duly respected, because my stamina is so low. I still care too much about other people's feelings but I also have to avoid a lot of emotional hassle whenever possible. I'm not sure how I can change my attitudes for something more constructive? It's a catch22.

My partner looked strained and said I have a choice; I don't have to respond emotionally to people who treat me badly.

I cracked and shed a lot of tears. I tried to explain to him, that I used to be quite good at ignoring other people's negativity or nonchalance. I used to have an impenetrable shell. But since I opened up emotionally about ten years ago, I've had to relearn about emotions. I've also become more tired and unable to handle the feelings that creep up. I am weaker and more vulnerable. I told him I've done my share of thinking in spiritual terms about letting go of resentment and not holding onto negative feelings. At some point I gave up trying to explain my suffering from some Buddhist point of view that stresses the illusory nature of suffering and the ultimate meaninglessness of dreams and aspirations. I felt I couldn't follow all that good advice because it made me even less able to hold onto my life. I have done my share of staring into the void; now I want this life to be the best possible under the circumstances and I want to actually enjoy it. And I'm not sure that means giving up any goals, dreams or aspirations. They anchor me into this reality. I could easily drift away and stop caring altogether. As I see it, this is what a chronic illness that starts early can do to you. It makes you cynical in a sneaky sort of way.

As I was crying, I also started to moan about the feeling of being a reject. I did have some friends as a child but I very quickly distanced myself from others. I had very different interests and views from those in my school. I was deep and serious minded. Even as young child I thought of myself as someone who had seen it all (which of course I hadn't, but it felt that way). I don't think I'd be lying if I said that this probably is a significant element in the fact that I became ill in the first place. I felt too deeply about life and so as I closed off emotionally in an attempt to protect myself I made myself ill. And although later on, I entered more favourable circles and I made a lot of efforts to make friends, people were not normally as loyal as I expected them to be and so they drifted away... I ended up making loads of friends but losing most of them. Recently, this started to get to me. I became very frustrated as I realized just how much of my scanty energy I had put into trying to make all these friends, and ending up with so very few! In some ways, I had been relying on their loyalty so the disappointment when people disappeared was great. I tried not to ask anything obvious from others, just kept the hurt to myself. I had been very open about myself without disclosing much about my illness, and felt that my openness was betrayed. I kept feeling I'd somehow done something wrong, but couldn't figure out just what it could have been since I knew I had been discreet and loyal and never attacked anyone. If I failed in responding to other people's needs at times, surely they understood that I wasn't well. Or maybe the problem was that they really didn't know what my life was really like because I didn't want to throw pity parties. Perhaps people weren't able to cope with my openness and honesty about the reality of life, and preferred to block me out. Or maybe there was no reason whatsoever. I'm probably more concerned about reasons than most other people! This is a symptom of being "highly sensitive"... I spend loads of energy worrying about all sorts of things that people don't normally worry about much.

I guess I had spent a lot of time online only to find that the contacts were even more fleeting than in reality. I recall leaving one site because I couldn't stand the fact that there were 80 people who were listed as my friends but that I knew nothing whatsoever about. I still don't know how to come to terms with the shallowness of social life on the internet in a way that doesn't make me feel vulnerable. Why should I care what other people think of me? Why should I apply the word "reject" onto myself? Rationally speaking, it doesn't make sense. After all, I have a few trusted friends in real life. It should be enough.

The whole issue of navigating within social circles and understanding various social codes in different areas is already a complicated one, and it's certainly not getting easier in modern society ascommunication is taking place over vast expanses. But it's probably even more complicated if you're ill. A long-term illness can leave you so drained, raw and vulnerable. Other people learn as they go along but they are able to play the rules as created by other people much like them. For someone who is ill or even disabled, there is not much room within the social game and in many cases we are left to ourselves without the aid of a job or some such activity that would help induce social skills. By definition, we are "abnormal" and rejects. On top of this, most people don't really want to get their hands dirty with someone else's problems. This means that you have to put a lot of effort into choosing who you open up to. Unfortunately, the act of being rejected is quite real and reinforces feelings of vulnerability in the ill person. I have found, that if I approach people with the intention of potential friendship, I usually get the cold shoulder. While this may not be a direct result of my illness, it's probably the result of me being "different" and unable to understand the normal social rules. It may have something to do with the fact that I have never grown up as a "normal" person but rather as an outsider who has had to fight in order to fit into existing models. And of course, this is bound to fail. So I suppose I remain slightly strange and eccentric from other people's point of view. Most of the time, I let other people come to me rather than the other way around. I would have become one of those solitary cat ladies unless my partner had come along to rescue me from solitude. And of course, he's the real thing. He's the friend who sees me exactly the way I am, day in and day out, and still loves me. He's the person who proves that I am just as worthy of love and respect as everyone else, despite being an outcast. Oh, and I found some old remedies for vaginal infection in my cabinet. Hooray!

This blog was inspired by the Bureaux Carnival of blogs.

THAT SLEEP ISSUE... YET ANOTHER THING THAT'S BEYOND MY CONTROL...

2010-04-28T03:38:00.000-07:00

Well, I had to succumb to my fatigue and try and sleep more. I have been trying so hard to stick to a schedule so that I might be able to reduce the amounts of medicines I take to sleep my minimum of nine hours. I was hoping that regular hours would make my body more aware of when it's supposed to turn itself off. Of course, in my case my nervous system keeps on going and so the insomnia is a chronic fact. But you can always try and make the circumstances more conducive to sleep anyway... though in my case there is also the troubling fact that I'm a lively person who tends to get wound up and exhaust myself, and once I'm exhausted I need loads and loads of sleep... with the result that I am off schedule once more as going to sleep the following evening will probably not work (sometimes the medicines are useless if I have slept "too much" earlier, so it's almost as if there's a diskrepancy between my body and my brain). It's an ongoing struggle. If only a day was 26 hours! This would allow me all the sleep I need without making it so hard to keep regular hours.

It goes without saying, that a lack of good sleep will seriously impinge on your libido. Nevertheless, I feel better today and more able to face the creative challenge of creating a wedding invitation. I also feel more positive about life in general.

Here are some viewpoints about sleep hygiene based in my own experience that I wrote down in the hope that it would help others:

GENTLE ADVICE TO THE CHRONIC INSOMNIAC:
My insomnia started as a result of emotional trauma, some ten years ago. As I was against taking drugs I resisted for a year, but got increasingly burned out and had to give in to them in the end. Herbal sleeping aids may help some but is not strong enough for me. Contrary to what many doctors tell you, some of the drugs that are supposed to help you fall asleep (but not necessarily stay asleep all night which a real sleeping pill would do), can actually work for years (Zopiklon in my case, you may need to look up the generic names, e.g. Lunesta in the USA). Doctors prefer to prescripe other "non-addictive" things such as Seroquel, which in higher doses is meant for epilepsia and psychoses... Well, it makes you drowsy and may work, but I'm not convinced the sleep quality is very good. One of the problems for many insomniacs is the lack of deep (restorative) sleep. This is for instance true in cases of fibromyalgia or chronic stress, where the nervous system is not able to wind down. Amitriptyline which is an old fashioned anti-depressant may help a bit in this case, but the side-effects are not very nice. They include dry mucus (for instance resulting in tooth decay and trouble speaking) low libido, and god knows what else that I have now forgotten. Anyhow, sleeping disorders may be very complicated and it's hard to get proper help. GP's and many psychiatrists like to make you think that you don't really have a problem because they don't understand the workings of the nervous system and the mind-body connection. I thought to compile a little list of things that I find helpful though, hoping that some of it might help others.

make sure that your bedroom is clutterfree. This is really, really important. Make it into a really cosy sanctuary with lots of soft cushions, a fluffy down duvet and good quality bed linen that has NO polyester in it. Change your sheets quite often, at least every fortnight. Make sure there are many layers of cotton underneath you if you have a foam mattress. Make sure the bed is soft enough to induce a feeling of security. The bedroom should never be used for anything but sleeping. I can't stress this enough! It really makes a difference. Sometimes sleeping on the ground floor can be a problem because you subconsciously may feel that someone could come in through the window. Try and see if this is the case. If you only have one floor, make sure the window is well blocked at least with heavy curtains if not in other more drastic ways.
make sure your bedroom is dark enough, and that it's neither too warm or too cold
you might need to wear ear plugs. I have worn them for years...
according to Feng Shui, your head should face the East. You can always try... I turned my bed around but made other changes too so it's hard to tell whether this could have made a difference. Feng Shui also tells you not to have mirrors facing your bed, and to me that's really just common sense.
research has shown that having some carbohydrates before going to sleep is helpful. So the old adage about milk and cookies is correct. I find it calming to have some soyamilk or night time herbal tea along with a sandwhich or cake. Some say a small piece of dark chocolate is helpful.
alcohol can be bad for the quality of the sleep but sometimes a glass or two of wine can be helpful in calming the nerves. Don't make it into a habit, though.
lavender oil (make sure it's essential!) can be burnt in an oil burner or sprinkled onto something close to your nose. I find that it really does have a soothing effect. You might like to experiment with different brands, possibly from different countries of origin.
some incense may help. I find that some cheap incense from Thailand has a woody note that soothes me. You have to experiment to find out what works for you. There is also lavender scented incense but again you have to see which brand works for you. For me, the scent of rose is also conducive to positive feelings. If you can, keep some beautiful fresh flowers by the bed.
sit up in bed and meditate before sleep, if you can. If you have a helpful partner, he could stroke your back while you gently fall asleep.
get enough exercise in the daytime, for instance a half-hour walk or more. Then do some gentle exercise such as yoga or light weight lifting in the evening.
Qigong is very helpful in tuning in with your body and calming the mind. There's something you can do when you're already in bed - it's an exercise called LaQi, but it's by no means exclusive to Qigong. You hold your hands in front of your navel as if holding a bowl or a ball (the hands should not touch each other). Slowly separate them by moving the hands further apart, about half a meter. Then move them back again, slowly. Keep doing this for a while and find that your energies settle a bit (you're "collecting" and "building up" energy between your hands).
lying on a bed of nails (look it up online) for half an hour before bed is helping me feel more relaxed.
try and remember that your body does know how to fall asleep and don't buy into the mindclutter that tells you that you just can't. Breathe deeply, connect your mind with the whole body, and have faith that nature knows what to do. Don't get frustrated if this doesn't immediately solve your problem; rest assured that at least it's helpful...
going to bed at the same time every day is an important thing to strive towards even if the mind may make all sorts of excuses to avoid it. One problem could be the feeling of not wanting to get up the following day, and so you postpone going to bed... try and counteract this by sticking to the schedule and finding reasons that make getting up in the morning into a more pleasant experience. It could simply be having more time to wake up and having something nice to drink or eat that you can look forward to. If watching TV first thing in the morning works for you, then go for it! Whatever helps...
it really is best not to watch TV before bed, especially not an engaging movie. For some, reading a boring book helps but in my case it makes me have to focus and so it has the opposite effect. Looking through a magazine and dreaming about a beautiful home seems like a better option.
whatever is on your mind needs to be dealt with, so write it down or settle an argument before sleeping. Seriously consider cutting the cord with people who distress you on a permanent basis. Do whatever it takes!
sticking to schedule is a good idea, but it may not work so well if you tend to alternate between being overly exhausted and overly wound up.
footmassage to yourself with some pleasant oil is a good idea.
sometimes, soft music can help you drift off to sleep. The choice is obviously yours, it could be New Age music, nature's sounds (birds, rain, waves) or something alternative. There was a time when Steven Reich's drumming was helpful to me. Now I prefer complete silence.
Sleep is the main thing in life that is not really in your control, and so this very fact can be stressful to many. Accepting this may be part of the solution.
last but not least; a sense of security is really important. You need to address the emotional issues that may make you feel insecure. Try and feel that nothing out there is out to get you, or that you are surrounded by benevolent forces that keep these negative energies at bay while you sleep. Having another person in your life that helps you feel safer could be a solution to some of these problems. Feeling vulnerable is not a crime...

As a side note, I'd like to add a few viewpoints on the way doctors often look at insomnia, especially in relation to a chronic illness of sorts. It's rare to meet someone who truly understands what it's like. You usually get referred to a psychiatrist, but they may not know much about insomnia per se (for instance, which medicines are really useful and not just "horrid addictive ones") and even less about the physical issues involved. If you're one of the unfortunate who suffer from ME, CFS and/or fibromyalgia, for instance, then the condition will affect your sleep in every conceivable way. It's all very well to talk about regular sleeping schedules, but when you're overly fatigued one day and extremely hyper the next, following a regular schedule can be next to impossible. It's also very disruptive if you are in a phase when you wake up a lot and thus loose hours of sleep. You may not be able to cope with the loss of even one hour of sleep. Getting up to do something else is just plain stupid advice. You might also find that you have to leave a party much earlier than anyone else because you can't cope with a disturbed schedule the next day).

I find it very stressful to try and juggle with medicines so that I can rest assured that I will fall asleep when I'm supposed to. It's already hard enough to motivate myself to stick to schedule! Doctors rarely understand any of this. A shrink I had said that for one thing he doesn't believe fibromyalgia exists, for another I just need to stay up for two days and then I'm sure to sleep! Yeah right. I'd sleep for 24 hours, wake up bright as a morning bird - at four in the morning! Try and stick to schedule - it does help. But you might have to be prepared for some anxiety in relation to all the arrangments that need to be made to ensure that this really works.

WILL MY PARTNER STICK IT THROUGH?

2010-04-27T03:43:00.000-07:00

Tears were burning behind my eyelids. "I don't know what to do... what if I don't get any better? You will feel obliged to stay with me... it will be a catch22 as you will know you can't leave me because I won't be able to manage on my own... you won't have the heart to leave me... oh no... don't become a martyr..."

My partner looked at me lovingly and said I'm being silly. Of course he will stay. He has no intention of ever leaving me. I thought, we are such equals in mind and spirit... but how long will he be patient with my inability to be there for him in body? "I take more than I can give", I weeped. "I love you", he whispered in my ear. I don't always find it easy to express these words, as I come from a culture were these words are rarely heard. I was glad the phrase is shorter in English. "I love you too", I said quietly with my mouth on his cheek. "Well, there you go..." he said. "You do give me enough. Every day. And it's okay to be tired. Just let go and allow yourself to rest". I felt my body relax as I sobbed. My body was still throbbing from fatigue but I felt better. At least I was allowed to just be. I also loved, and apparently, I was loved as well. Truly.

This song catches my mood of today. "What is left of our love" is the theme but I'm translating it to what is left of my former life and dreams. Besides... I expect my partner may be sad and frustrated at times.

HOLDING ONTO DREAMS WHILE COPING WITH FATIGUE

2010-04-26T03:27:00.000-07:00

My body has been so heavy with fatigue that I've been dozing off in the mornings without extra medication. A few days of rushing around getting material for my wedding dress and other forms of shopping - I don't know how to avoid all that without compromising a certain standard of living (though in all honesty, we ought to be on a very tight budget and so the financial situation is looking very bleak). I am also quite obsessed with looking as good as possible, as it counteracts how I really feel within my body and boosts my self-esteem. I don't want to look like and feel like the sad disabled person who failed so miserably in making a life for herself. I'm fighting this even if it be the last thing I do (it may well be my ruin as I can't afford it financially or physically speaking).

But... I have to find a way of compromise; striving for the sort of life that I wish to have inspite of my illness while making sure that I don't get too wound up and exhausted in the process. After all, I didn't use to have dreams; now I have them and figure it's a good thing! It's getting increasingly difficult to balance all this though. What must I let go of, what should I try and manage better..? How..? Age and ten years of extreme stress and insomnia is taking a toll. I feel at times as if my body is just giving up. My IBS is worse, I have persistant headaches more often, my libido is almost non-existant, my body is more exhausted... It's a scary place to be. This feeling of utter physical depletion is new, and the kind of no-care attitude that I experience is not necessary one of a depressed state of mind. Right now I'm not opposed to getting things done. It's just that I can't mobilize a sense of urgency. This is even though getting the wedding invitation and other life changing issues taken care of is really urgent. I'm sort of zoned out, so I'm really in a paradoxical state right now (I want things and I don't want things at the same time). Though my partner says I'm not to blame because I can't help feeling this way, I do feel guilty in subjecting him to it.

I am in different situation than some people because I have been ill for most of my life. Do I have chronic fatigue syndrome? Apparently one of the criteria is that the patient is struck by sudden, inexplicable chronic fatigue when previously they were "normal". If this is true, I don't qualify. I've been tired since I was 15. I remember seeing the doctor back then and being told nothing was wrong with me. On the other hand you could argue, that I was struck by fatigue at that age... I don't know, I don't have the strength to worry about diagnoses right now. Perhaps when I move I'll find someone who is a bit more interested in nailing down the syndrome. It might be helpful in terms of the kind of help I could get and in finding a language to use when dealing with doctors. It's always a relief to find a name for your illness. Though it's a bit daft, it seems to be true. Still I might just have to make do with the diagnoses I got some ten years ago; fibromyalgia, spinal issues (for which there is no exact term, apparently) and depression. Depression was the real reason I was granted disability because there are so many people with back problems out there. Hah. Try and explain to the shrinks I'm always referred to that it's quite normal to be depressed when everything you do in life requires so much effort. Apparently I'm very bad at getting the message through. I will go and see a GP next week and tell him that I refuse to see the shrink again. She was incredibly abusive last time I was there. She blamed me for being late (which she was, not me), and became very defensive when I said I wasn't happy about being prescribed an anti-depressant without being told what it was. The psychologist that I talked to later assumed she had a bad day. Right. Is a professional psychiatrist allowed to have a bad day?? *Rolling eyes*. I seem to be attracting idiots (I must be doing something wrong!). On the other hand, I suspect that most psychiatrists are pretty mental themselves. I've heard strange stories... The other guy just shrugged and said, well I should just try and get over it, c'est la vie. He doesn't quite get that I can't get over these things just like that. I get stomach cramps just thinking about going to see the psychiatrist again... I can't deal with this sort of thing anymore. It's part of the condition.

My partner is making advances on me but I'm limp and unresponsive. He doesn't quite understand that my body is too exhausted to be able to feel any sexual feelings. He thinks I should just be able to lay back and receive. I wish it was that easy. I also wish I didn't have to feel aroused before we can have penetration. It would make life simpler. Now I have to deal with this maze of explanations and excuses. *Sigh*.

Why Bother..?

2010-04-19T05:03:00.000-07:00

I am questioning whether it's good for me to be writing this blog. I wanted to make notes and share with others at the same time, but I feel a bit discouraged. I've been an activist for various things but it's usually quite taxing because it requires extra effort, can take away from real life (at least whille I actually have one), and normally give little in the end. I am always hoping to make a difference and that people will appreciate my honesty; the truth is very few actually care. I will have to give this some thought... What's best for myself? How can I support my own wellbeing in the best possible way..? Meanwhile, I hope someone will come along who will get something out of my posts. Let me know if you wish to talk to me in private.

SURRENDER

2010-04-18T10:35:00.000-07:00

Something quite important occurred yesterday. My partner and I went to bed and started cuddling, but I didn't feel comfortable. Usually, all I need to do is ask myself what I'm feeling and the answer comes to me; this time it seemed that being in bed in that particular way was reminding me of all the efforts and disappointments in the sexual arena that I had experienced over the past few months. I felt as if energy was escpaping from my stomach, leaving me with a void. This happens to me quite often. I decided to tell my partner about this right away so he wouldn't have to second guess anything, and asked what we could come up with that would break any such pattern. He thought maybe I needed to be more in control to feel better. It didn't quite resonate with me. Instead I turned over and lay on my back, so that he could hover above me. He kissed me and fondled my leg; I was hoping he'd touch me down there. He did. Suddenly I switched into surrender mode. You could call it plain abandon, of course. This is not unusual; I've been doing it since we met and finding that it has helped me enjoy the sex a lot more. As I'm someone who always tries hard to be in control of my life despite the efforts it requires to even manage the simplest things, I seem to really need moments of letting go of that control.

This time, it seemed something happened, because there was a bit of an electric current going through me down to my legs. As long as I was able to stay in this mode, my legs felt limp. I've had something similar happening to me a few months ago but had lost sight of it. I was enjoying the fondling more than I have for a long time, and had the first orgasm in weeks or even months.

In the night, I had a significant dream. I dreamt I was making a whole through the snow down to the ice while my partner was watching (he was just a quiet presence). I was stamping on the ice about a metre down, upset that it had frozen back. Somehow I stepped a bit to the side and stamped, and the ice gave way. I slid into the water, quite far down. I could see the light coming through the whole in the ice, from afar. I was thinking, ok, I can either try and hold my breath and go back, or I can just decide to give up my breath altogether and drown. That would of course be the end of my relationship. So I made the decision to try and get back. Whether I did is not clear because I woke up, but to me this dream is a spiritual dream about making a conscious decision to surrender to the life I have now. Surrendering to death was an equal possibility but not the one I chose because the life that I would have left would have been left unfinished.

The next day, I told my partner about this and he said that it's very significant to him that I surrender to him in trust. He has made a point that there's something fundamental about it and one could call it an interplay between yin (passivity, receptivity/taking) and yang (activity, bestowing/giving). It doesn't mean that I am never in contro,l and we don't play kinky games either. It's just a dynamics that we find meaningful as man and woman. I have also done visualizations in the past that involved the delight of falling through a hole through the Earth.

In the afternoon, we tried penetration again. I had many moments of great closeness with my man, also during the penetration, but I was feeling weak quite quickly. I didn't have much pain, but some all the time. Not as much though, as previously. Afterwards I checked the previously sore spot at the entrance of my vagina; it was sore again. Unfortunately I had not checked it before we did anything. After all this waiting, it was the same as before, but not as bad as it can be.

DEALING WITH CONSTANT DISAPPOINTMENTS

2010-04-15T01:20:00.000-07:00

Quit frankly, I think one of my greatest obstacles right now is fear of disappointment. Disappointments have ruled my life; I remember contemplating this fact already at an early age. It's probably not uncommon with people who had a parent who was volatile in some way. My mother was a period drinker so when things were bad I kept wishing for the good times and when the good times came I kept fearing the bad times. With the condition I attracted early on things have not improved. Although not diagnosed with CFS, I am always very tired and in some form of pain. Like everyone else, I feel disappointed when there's a flare up. As if mirroring the childhood experiences, I long for the good times and when they come I dread the bad times. I keep thinking something horrible is due to happen if I'm in a good place mentally and emotionally speaking. I suffer from a severe lack of basic security, so I don't feel really safe in a deeper sort of way. I don't mean that I expect people to come and mug me in the street, but I have hated living on the ground floor as someone could potentially come in through the window at any time. That sort of thing. It makes me cling to my material possession as they represent stability, security and "my own space" (and one of the few things that seem to give me some joy is buying things if only I can afford it - I hate to admit it but that's the way it is).

I'm not entirely sure how my flare ups work as I have tried not to pay too much attention to the fluctuations but be accepting instead. However, as soon as I enter a relationship the bad days become so much more obvious. When I entered my last relationship, I got vulvodynia straight away. With this relationships, I've suffered the consequences of having vulvodynia for so many years... There was me thinking things would be easier because I was in less vaginal pain... well I suspect that prolonged nerve pain has contributed to the numbness and new negative sensations. Of course it's all very disappointing. Something in me just died away and I cried a lot.

Now I have to get over my anger and bitterness about having had such a joyless life. I believe it's time for change. Great things can happen. I'm the ultimate realist and not prone to overzealous attempts to cover up how I really feel. I stopped trying so hard to please other people a few years ago and who knows; maybe that's a reason there are so few of them left in my life. I'm way too sensitive about what I perceive of as other people's nonchalance towards me, but I have to try and minimize the exposure to such situations I guess. I do know things could be worse. I can still do a lot. Even though it takes a hell of an effort at times, I still exercise every day because I feel lousier if I don't (stiff, muggy, foggy, crabby, etc.) I have loads of problems with the sleep as I never know from one day to the next if I'm going to be very wound up or exhausted to the bones - whether I'll be able to sleep without a huge amount of pills or whether I'll sleep too long so that my schedule gets disrupted (again!!). But on a day when I had lots of sleep I can manage a lot of things.

As someone duly pointed out (http://www.fightingfatigue.org/), there is not much difference between work and play for people like us. Everything takes an effort. However, I believe there must be a way... On the one hand, learning to live with a disability is a humbling experience. But it mustn't remain only that. I need to settle my dues with the universe. In the past, I went through an important depression during which I decided to live my life and not think of ending it all the time. Through this decision, some of my severe stomach pain disappeared. Now I have to decide not only to hang in there until my time is due, but to embrace and love it. I need to believe in the higher values of life and not just settle for a convenient arrangement that keeps me comfortably numb. Somewhere inside myself, there's the key to my own heart. How else is there any chance of ever entering a higher level of life?

CREATING SPACE WHERE THERE IS NONE

2010-04-14T02:57:00.000-07:00

One of my few friends in this area visited me yesterday for a short while, but I felt as if someone had poured tar into my ears. My speech was slurred and it was hard to create meaningful sentences. I'm not quite sure what's going on with me at the moment. Some people suggest that all the collective upheavals can be felt by sensitive individuals - I am likely to look at my states of being as combinations of personal and collective issues that are all intertwined in a mysterious way that noone can figure out. In any case, she made the point that I'm giving her hope, and I said I have sensed I have started to give hope to a couple of other friends as well. It's certainly a new thing for me! This is very simply because despite all the odds, I did find a wonderful man who is loving and supportive in every way.

Plenty of people have been inspired by The Secret and most people know of it. The idea is that you manifest whatever you believe you can have. That's all very well but in my opinion it's a very sketchy and dogmatic way of looking at life. The book's message seemed highly materialistic to me, and could well serve people's ego's rather than help create a more spiritually and emotionally advanced society. I was put off by all this. Well, to each their own, of course. Anyhow, my own experience is that when you do truly want something and know that you truly need it for your wellbeing and further growth, it comes to you eventually. Note that I am saying "need" as well as want.

I don't like to create rituals and complicate my existance further; if anything I feel I need to simplify. I like to believe, that life is inherently intelligent and that there is a path for each of us that is the good path in one way or another - good in this context implies "useful" to whoever and whatever we happen to be in this existance. The point is to find it and you cannot do it with clenched fists and an unflexible mind. I guess I might say that to me it's a question of "letting go and letting life". Relax and listen to what your intuition tells you.

In my case, after some very stressful relationships and dating experiences I became quite convinced of a few things. Although I kept hearing from other people that I should be self-reliant and create my own life the way I want it to be before I ventured towards a new relationship, I didn't really feel this even though I knew it was probably politically incorrect. What I felt was:

I needed a man who was physically strong and practically minded so that he could help me with life's practicalities, and he also needed not to have too many hang ups from the past because, as a counsellor pointed out once, I already have too much to deal with regarding my own. It would also help us not get into co-dependency. He would have to have patience and tolerance, and a superior mind so that I could discuss all the things that interest me (not least my own inner life and anything related to it - and his of course!). And last but not least; I wished for a conscious relationship that is not driven by the whims of the subconscious mind, so to speak.
I needed company, as I had spent way too many years on my own feeling deprived of the joys of sharing and feeling accepted for who I really am in my daily existance - solitude just isn't my cup of tea. I also wanted a good sex life so that I could feel more alive.
I needed a man who would help me move from an area where I have only known excruciating solitude and incompetent as well as petty social workers and doctors. I simply am not physically equipped to deal with a move on my own - and even if money is scarce it's more when there's two of you. You may bring your problems to a new place, that's for sure. But you may also be helped by the energy of a new place if it's in better tune with who you are.

Of course it was hard for me to believe that I could have all this. Who would willingly enter a relationship with someone who is already ill?? It seemed that there are so few good men out there and when you're middle aged you get the sense that they are all taken - if they are good people they have a tendency to stay with their partners. Obviously I didn't wish to date a serial husband. I nonetheless persisted in my pursuit of this kind of company. And he did come, with flare! Two hours after I'd broken up with someone else.

I am naturally very grateful for this opportunity to move on and create a better life, though of course I probably have myself to thank despite all my despair and worries that things might not get better. And to be quite honest; I don't feel that I manifested a man. I feel that the one who was meant for me came into my life when we were both ready. For whatever reasons, I am right for him too. I better just believe it!

In the light of the things that I have to be grateful for, I feel quite upset with myself that I've been feeling so grumpy for many days. I feel argumentative and even quarrelsome. My heart has felt tight and blocked. I wish I could produce more love at will. However, I suppose it's just part and parcel of the processes I have to go through. It's hard for my partner to see me grumpy and discontent and that makes me feel guilty (eek!). He still makes me laugh - he is so good at that and actually one of the few people who are able to connect with my sense of humour. In line with things I've wished for, we resolve most tense moments through humour. But my laughter has been a bit muted this week. Some good sex might help, but there's a process to go through in this regard too and I just have to wait it out and hope for the best. I have been able to resolve issues of physical pain before and so maybe things will change for the better as I just go where the boat takes me.

MINDFULNESS

2010-04-13T00:46:00.000-07:00

We've talked a lot about trying to relate as much as we can in the most mindful way we can. Recently we've had some good moments in all their simplicity; I tried to be accepting of the way things were just then, embrace it, and stay meditative about it. I tried to imagine that my energy was expansive and unobstructed and that helped a bit, for a moment. Of course, the best sex is meditative in nature - that's when your attention is undivided. But when you're having problems with the libido you're naturally more easily distracted, and so it requires more conscious effort to stay tuned to your partner and the space you reside in. However, there is intrinsic value in trying to be here now, and it's good to keep it in mind.

I've been taking Rhodiola Rosea which is an equivalent to ginseng for a few days (it's supposed to be a pick you up). I've been abnormally tired, as if my veins were filled with lead. I can't explain it, as I have no idea what it relates to. Yesterday I finally felt a bit less tired and so when we decided to have a cuddle before going to sleep I felt somewhat aroused as we kissed. Maybe my partner had also caught onto the idea that he's not always quite there with his energy either, especially when we're indoors. I have noticed that I am more easily engaged when we kiss outdoors, and started to wonder if it was actually dependant on his energy to a high degree. He said he's more easily distracted mentally by things that need to be done when we're indoors. So I assume he was also putting in some extra effort to put the mindclutter aside and kiss me mindfully. It was good news to me; I wasn't dead yet... our relationship wasn't dead yet... however, as soon as he reached for my vagina I froze. On several occasions he has stimulated me with his fingers very successfully, and I've been really impressed by his inventiveness. However, I guess he has started to be worried about hurting me so there's a lack of some assertiveness that usually is a turn on for a woman. It's difficult, because on the one hand he has to be quite gentle but if he's not 100% into it I can't respond (and yes, it has happened in the past as well so it has a lot to do with the energy you feel between your partner and you). The angle also wasn't good. It felt as if he was groping with his fingers. I've told him before that I don't like it, but perhaps he didn't remember... I had to take his hand away. After this, I was able to reconnect a bit to the arousal but quite soon lost all sensation and had a feeling of being blocked. There was tension in my chest and stomach. I was wondering if it related to some memories of my childhood that had come up before we started out. For a while, my partner was upset about not having been able to do things right. We are all told to communicate our needs to our partners but it's not easy to tell a man he is not able to get it right, even if it's just temporary. I reassured him that I had at least enjoyed some of it and reminded him that the object of our exercises was to explore and enjoy without a need to perform.

Unfortunately, I had nightmares the following night because I feel I am losing my ability to feel aroused. I am terrified that something like this would come between me and my partner and break our bond. I still feel more energetic but it feels as if my guts are in a knot. It's especially heavy in the chest. Yesterday morning I was waking up with a horrible anxiety in relation to people who are negligent and unpleasant towards me (I'm so darn "hsp" (highly sensitive) and vulnerable to other people's nonchalance), so maybe I'm processing something... who knows what exactly.

NOT BEING SOLELY RESPONSIBLE FOR ANOTHER'S NEEDS

2010-04-09T04:11:00.000-07:00

I had a brief talk with the psychologist I see about once a month yesterday (this is the only counselling I get for free). I was a bit embarrassed to raise the issue of sex last time, but in fact he did and I just had to swallow that silly voice that tells me "it's not okay to talk openly about this with a man who is not my partner". I resolve to break through such useless conditioning nonetheless. Well, he doesn't really provide much help but sometimes talking with an outsider structures my thoughts a bit. He figured old school sexology usually forbids genital touching for a while so that people can open up to other sensations in the body (that was all he knew about sexology I expect). As my partner pointed out, this is pretty much what you hear on educational TV shows. We consider ourselves more enlightened than having to go to see a sexologist and wade through endless explanations about my condition only to hear that we shouldn't touch each other for a while. Of course, this may not be the case but chances are, this is where we'd end up. Since money is involved, we have to think twice as to what we want to do. We also talk at great length from many viewpoints so it's hard to imagine anyone else could come up with something very inspiring. I've never really gained from any form of counselling or from self-help books (I've read some but in general reading is very difficult for me as my attention span is so bad), and though I'm nowadays open to receiving help I usually end up figuring things out for myself. Or now as my partner points out, together as a couple.

Our conclusion for the time being is that we can touch each other but I do need to be aware of the moments that feel especially meaningful and retain the memory of what exactly makes them special. I need to avoid "hanging in there" when I don't feel it. I also trust the process of life to sort itself out to a great extent quite spontaneously if one is only willing; I already have some more sensations just from experiencing some mental relaxation in relation to my partner's sexual needs. After all, I was very preoccupied as a child with trying to make sure my parents were okay and didn't go out and hurt themselves in any way. I'm sure a bit of transference to my present relationship has taken place. It has been quite difficult to trust that my partner is not going to take off because of not getting enough sex whether it be penetrative because I just can't or some fondling because I just don't feel like it. Of course, as soon as you enter a relationship you become responsible for it as an entity, but one person should obviously not take sole responsibility for the other's happiness. It may sound trite but it's difficult in practice, as I'm sure many have discovered. Sometimes, it's easy to feel overwhelmed by the man's desire for sex, as women usually don't prioritize sex quite as much as men do. It can make a woman feel responsible for his wellbeing and all that... some men can use it as a means of gaining power within the relationship. We don't have such issues of power so I just need to relax into the relationship more and trust that things sort themselves out even if it takes a bit of time. I need to see that even a small gesture of intimacy is worth something and that I don't always have to make such efforts or perform in any way. As a side note, chronic fatigue induces a chronic state of performance as nothing ever feels easy.

At the moment, I worry about the future because I made some promises of being available for artistic projects within an organisation yesterday. I also worry about the move and the wedding... My life is never simple and so there is a lot to juggle.

THE FINE LINE BETWEEN GIVING UP AND LETTING GO

2010-04-07T02:34:00.000-07:00

Yesterday, I cracked. I just couldn't take it anymore. It was too hard to find any constructive ideas as what to do and to retain a hopeful disposition. So I just cried all day. I was balancing on the fine line between giving up and letting go of excessive trying.

I've been too tired and preoccupied with my relationship to do much research online, but I probably have to do some more. One article I came across suggests that the immune system can be boosted by acupuncture and possible also a yeast free diet as some individuals may have Candida or systemic Yeast in their bodies. I guess it's possible that I've developed an extended vulvodynia with some more vestibulodynia (pain on touch as opposed to generalised unprovoked pain). I will have to look into this a bit more. I have a distinct chronic illness since childhood and there is no doubt in my mind that my nervous system is strained to its limits. I did a yeast free diet for seven years in the past and as it did nothing to my stomach problems (I have diarrhoea quite a lot and have been diagnosed with IBS) I figured this was not one of my problems. On the other hand, I believe in ways of boosting the energy level and working with the body in terms of an complex entitity of energetic connections as is done, for instance, within acupuncture.

When my partner was away for three weeks I actually did try very hard to work on myself in various ways available to me. On the one hand, I processed trust issues as he was away and I wasn't able to keep an eye on his whereabouts. It was a very tough process but I came out alright in the end; I was glad I had had this oppportunity to test his truthfulness and sincerety in the beginning of our relationship and also clear out my own paranoias from the past. Meanwhile, I did a double session of qigong almost every day and lay on my bed of nails in the evenings. The bed is a Swedish invention based on the idea of lying on nails as has been the tradition in India. I have found that it helps release tensions in my back, so I can recommend it warmly. It has become very popular in Scandinavia so I assume people find it helpful. Once you get used to it, it doesn't seem painful anymore. Sometimes, when people are in lots of pain, this sort of radical pain management is especially successful.

When my partner came back, it was the beginning of a new chapter for us and so I was quite apprehensive. However, when we lay down in bed I made a conscious decision to open up emotionally, and somehow it worked... I welcomed him into my life and my heart, for real. As we touched each other, I was more responsive and sensitive in a good way than ever before... it was truly heavenly but as soon as we had penetration things went horribly wrong. The sore spot at the entrance became very painful and I was not able to have an orgasm (which I'm normally quite capable of). The disappointment was devastating to me. Of course, it echoed so very many serious disappointments that I've experienced throughout my life. Yes, I'm not alone in having had disappointments, I know that. But for me personally, this is obviously an issue that I still have to resolve in my mind. There were other disappointments as we continued our life together, and gradually I became more and more apprehensive about having sex and things seemed to rapidly be escalating downwards. I suspect the chronic pain that was now more extensive than before was making me number, but I'm not discounting some emotional impact as well.

In the end, I couldn't take it anymore. Life without pleasure... is this my cross to bear for the rest of my life? I was thinking of finding another gynecologist but I had serious misgivings about the outcome of that. I found one through a friend but couldn't get a hold of anyone on the phone to make an appointment. Was this a sign..? I felt that maybe I ought to think this one through a bit more. After all, if I have endometriosis it's not very likely that they can identify it without surgery. And what else can they do - really? Even if the new gyn has people skills, it doesn't mean she can give us useful advice about the sex. And a sexologist isn't a physician so they probably wouldn't understand the physical issues that well... it's a lot of money to pay for private consultations, especially if you don't get what you need during the first appointment. We are very poor so I want to think twice about where any money like this is going (when I was alone paying for any private or alternative treatments was out of the question altogether).

My partner suggested that maybe what we ought to do is give the old girl some proper rest. After all, I was doing better after the three weeks alone. This was quite distressing for me but we'll just have to see how it goes. At first it seemed almost like a death sentence to me... like giving up altogether, which is what I've been on the verge of doing for a while now. However... I realize that I must not repress the sex, it has to be alive and well even if we are not having penetration... this is important - not easy but maybe the only way. For one thing, there must be no pressure on me whatsoever and so I need to feel his patience and tolerance. He understands this perfectly well. On the other hand, I need to heal physically speaking but also try harder to work with my energy system just as I did when he was away and I felt I had time for that. As it is, I have become too overwhelmed by too many issues and I need to focus on what my body and soul need in order to get into better balance. I need to let go a bit... be more trusting in life. This I have found to be a solution in the past. I expect all the crying helped a bit; I am sure some tensions were released and maybe I can now start afresh.

For stories and useful links about vulvodynia, you might like to try this: http://www.vulvodyniasupport.com/

COMMUNICATION AND INSURMOUNTABLE OBSTACLES

2010-04-06T03:23:00.000-07:00

I do not want to tell my partner not to be suggestive when he feels like intimacy. Of course it's a wonderful thing to be wanted. Yet, to me almost everything he says I take to mean "can we have penetration soon". It's silly, since it's pretty clear by now that sex to him is a whole range of activities and ways of being together. But if I set out to create the environment for intimacy, then I usually include penetration in the equation because it seems inevitable. Of course, it's what I want too. But if I'm tired and especially if I have not slept enough, it's probably not going to work for me. So to me it's a situation in which I either try my damnest or don't do anything much at all about it. My partner obivously expects me to show interest as well. But recently, it's been very hard for me to feel fully present on a sexual level. I'm just so very tired of the constant pain (and no, it's no fun when it doesn't go away for days) and all the extra efforts it takes to try and have a life. I used to get some out of having sex - now, for the time being, there's nothing more than feeling close to my partner and making sure at least he feels happy. He says he evidently needs to rephrase his statements about being close to me... he's trying to communicate in ways that won't make me feel pressure but I wonder how feasible it is... It's still hard for me to believe that a man might stick through because of love for me and not because I'm sexually attractive.

It's not getting better; it's getting worse. I can't even enjoy penetration anymore. I found that orgasming from penetration alone was not so common among women. I used to get off very easily. Now it's getting harder and harder to get there and it becomes a sweaty journey with a goal. It feels as if my bladder is going to explode and I'm just very sore all over. The gynecologist told me there was nothing wrong with me. Her only suggestion was that maybe my partner is a bit too big for me and that we're having sex too often. But now we have not had sex often at all - maybe once a week. I also didn't use to have this problem with pain inside of my vagina until quite recently. This is a pain that seems to have something to do with the penis being inside of me, not just the horrible sore spot that occurred on the edge of the entrance quite soon after we got together five months ago. So what is going on?? I'm not sure I trust this gynecologist because she claimed I have no myoma in the uterus while that's what I've been told I have by various other gynecologists for many years (or am I understanding this wrong, somehow? I'm talking about benignant lumps). I need to find another doctor, I suppose. I once went to an expensive clinic for women in the capital city and was misdiagnosed - the woman thought I had trush when in fact I had just started to have vulvodynia!! So of course I'm suspiscious of these people. Do they really know what they are doing... and so on.

TRYING TO CATCH THE MOMENT OF RELATIVE EFFORTLESSNESS

2010-04-04T02:34:00.000-07:00

Life starts to centre around the moments when you think you might be able to have sex. It means that you trust that your companion is able to switch it on at any moment - and quite frankly you can't deal with any problems he might have because yours are so overwhelming already. You start the morning by thinking "hm I wonder if today is a good day... do I have enough energy for sex? Do I feel better down there? Am I generally speaking into it... will we have time?" Very often the answers are not clear until we are in bed and things either work or don't work... and recently I have not really had enough energy or positive sensation. I'm just exhausted.

Forget about spontaneity. It has to be planned. There is no other way because you have to make sure you're comfortable physically and emotionally speaking. So the scene has to be set up. My partner is willing to succumb to all this. But of course he can never quite understand how much stress I feel in trying to find those spaces in between my bouts of extreme fatigue, pain and lack of opportunity in general. Well... he knows some of it... and he knows it's not always a good thing to be so goal oriented when it comes to sex. At the moment, however, I don't know how else to manage this whole thing. I don't want to risk just disconnecting my interest altogether. It can happen oh so very easily, if sex turns into a chore or is just generally speaking demanding too much effort with little reward. Of course, it's a paradox of trying to plan what should not be planned, as it defeats the whole nature of intimacy. You can plan things to a certain extent... yes... but normally, you can't just decide to be horny. I mean, that you could have a wish to be horny but it doesn't guarantee that your body functions accordingly. And the more often you get disappointed with yourself, the less eager you are to try again. It's a viscious circle that must be defeated!

It's hard for other people to understand, that everything you do in life while suffering from fibromyalgia and/or chronic fatigue demands physical efforts, and so practically everything is tiring and some form of "work". The challenge right now is to try and find a way in which at least some things in life don't appear as work or chores in my mind. It's not easy... not only is it about conditioning, but also the fact that I can't do much about my lack of energy right now.

THE "HOW TO"

2010-04-01T01:48:00.000-07:00

Seems that I did catch some obscure bug on the ferry (maybe at the buffet...) so my headache and extreme heaviness was not just due to my condition. I have had bouts of these symptoms about three times since November, so maybe it's a recurring bug. I don't normally have such symptoms as my fibromyalgia doesn't show all of the classical symptoms. This is probably due to the fact that the muscle problems are related to my deformed spine and not ones that just suddenly emerged. I have no medical arguments - I can only explain what I experience. For instance, exertion does cause a flare up but it's not as bad as it seems to be for many others. In terms of generalized pain, I probably suffer more from the fatigue and lack of energy than I do from the muscle pain. The muscle pain can be very intense if I'm very stressed and prolonged stress can cause a long-term tension that just won't go away. In the latter case, a massage may not feel like anything at all because I'm all tense and numb. I worry a lot about the chronic tension that goes on in my back muscles, but if I am not too tired to exercise, the work outs do give me a sense of having done something to help the situation. I hope this made sense... it's all quite complicated as I'm sure other afflicted beings know.

The only person who has some clue about gynecological issues in the area I live in is a gynecologist at the health centre. She's a foreigner and it's very hard to communicate. It's just another incident of not feeling heard and understood by a so-called expert. Nonetheless, having tried very hard to squeeze some viewpoints out of her, I got a few clues. One was that I really need to open up my legs as wide as possible and be very careful during penetration. Having tested positions I can say that they do matter in terms of causing pressure on the bladder and other parts on the inside. So hopefully, without too many compromises, we'll be able to have good penetration again. I really enjoy this part of the intimate act, as most of the time, I seem to be quite receptive and sense the energies between us quite acutely. The other thing the gynecologist mentioned was of course, the lubrication. When I got the vulvodynia 7 years ago it didn't take me long to figure out that some oil helped a little bit. A physiotherapist who tested me for potential muscle cramps in the vagina (I came out negative so no "fibro" down there) also recommended a paraffine-based oil. Where I was living at the time had one that you cannot get in any other country. It seemed that waterbased jellies were horribly sticky and dried up quickly. I saw no reason to use them since I had had my tubes tied (oils dissolve latex condoms). I got the sense that they were less natural... and I wanted to be as natural as possible. Nonetheless, the gynecologist that I saw when I started my present relationship said I really ought to use the waterbased lubricants because they were richer. On pressing her, she said that she's in favour of natural too but still thinks the jellies are better. On pressing her some more, she said baby oil is okay as far as oils go.

I set out to find a good jelly. Where I'm living, there are not many options. I got a cheap one but on application it burned, so I got it off me very quickly! Perhaps the expensive stuff would be better... For the time being, however, I decided that I wanted to stick to oils as I really had no evidence that they were not sufficient. I like the feel of it and will also try natural oils such as almond and jojoba when I get a chance. There are also creams for healing irritated tissue that you can use (including all-natural Calendula cream) but I find them pretty sticky. The baby oil is fine but I have to warn you that they add perfume in some countries. I'm not sure I'd like that in my sensitive vagina even though it may not be considered harmful generally speaking.

Luckily, I have had no problems with upset bacterial balance or trush since starting my present relationship. In fact, I've never had problems with candida, possibly because I never used tampons and I live a healthy life style in general. So some things are alright... thank goodness.

THE STRESS OF STARTING A RELATIONSHIP - HONOURING THE BODY'S NEEDS

2010-03-31T01:50:00.000-07:00

I think most women feel a certain pressure to perform sexually so as to make sure the man doesn't lose interest in her. We all know about the over-sexed society and so on. When I'm disconnected from sexual feelings because of fatigue, pain, or some mental reason, I feel very guilty about it. It has been a long journey to try and get out of that mindset. My partner has been very supportive as he understands that this is not the way to have a good sexual connection. He has had to tell me many times over that sex to him is a means to greater connection and not just an end in itself. On the other hand, he has had some hangups from the past about women trying to avoid sex at all costs and so at times he's felt pretty anxious about my inability to respond or a sense that he's doing everything wrong because I'm not responding in the right way. What is hard for me is to want to connect sexually but not being able to because the energy is not there; when this is the case I am also feeling much more sensitive to touch in a negative way. I assume that the fact that the vulvodynia (vaginal pain) has persisted for so many years is because of the fibromyalgia that tends to make all skin on the body more sensitive to touch. And then of course, there's the mysterious problem with the over-active nervous system that no medical authority seems to be able to explain to me or do anything about.

So, may partner may be touching me in ways that normally would feel alright if I was aroused or very likely to be aroused, but if I'm not then it's just hurting and he gets the feedback that he's not able. The irony is, a woman likes a man to be gentle at first and maybe a bit rougher later on, and this is especially true when you have a condition such as mine. But even if your man is gentle, his way of grabbing with his hands is always going to be rougher than a woman's way of touching.

I tend to push myself a lot, but I'm getting older and I just can't sustain a level of stress anymore. When I started this relationship, it all progressed at great speed and I had loads to deal with. You don't hook up with a stranger in a matter of days; even if you feel you're going to get along with this person really well it still takes months to feel settled and relaxed. There really was so much to deal with during the first months that it's no wonder I felt pretty exhausted. It was like having to go to work when one is not fit to going to work - and I'm saying this meaning that there are the good aspects to "the work" as well as the tougher ones. Many things about myself and the point I was at in life rapidly got better and I had many experiences of energy blocks releasing. At the same time, there were all the inner shadows and hangups to work through as well as finding a way of living side by side when neither of us was particualarly used to it.

We really are at a good place right now. Emotionally speaking. We feel more and more relaxed with each other. So it makes sense, that when I can finally letting go of a lot of the strain the beginning was putting on me, I also went into a state of hybernation. I feel like I'm not really "there". This is not unusual for me and I have to fight it a lot, but sometimes I think it's a symptom of the body and mind demanding rest. Perhaps the trick is to accept that right now I am not able to engage my body in sexual activities because I really do need the rest. I guess we always have to honour the body's own wisdom and its needs even when it's hard to understand how it really works.

MEDICATION AND POSSIBLE EFFECTS ON THE LIBIDO

2010-03-30T05:11:00.000-07:00

In the autumn, when I went to see the psychiatrist who is not often available, she gave me something "to calm me down" without explaining what it was. I was horrified to see that she had prescribed an anti-depressant. I had told her that I had just started a relationship. She might have wanted to talk to me about the possible effects on the libido that these medications have. The next time I saw her, I complained, but she went into a defense-mode and started to give me a lecture on the possible side-effects these meds have. I could have told her they were the reason I wasn't going to try the new medicine but she gave me know space to say anything at all. She shrugged and let me know she had given up on me by saying that "you always go your own way anyway". Of course I do! When the level of national healthcare is so deplorable and you have a condition that changes with each day, you have no choice. You try your cocktails of various pills to the best of your ability. It's not as if anyone volunteers any time and in-depth information about them.

I've tried anti-depressants three times but I found no relief from them whatsoever. As a creative individual, it was terrible to become a walking zombie with no emotional life to speak of. Maybe the nightmares I had on quitting the drugs was a suggestion that I had actually not dealt with any emotional issues during the time I was on the drug. I suffer from an over-active nervous system and have often been told that stress and issues related to fibromyalgia can seldom be treated with mood enhancers. I also don't like to be on a course of treatment unless absolutely necessary. If I'm wound up, I rather just take a tranquillizer but make sure it doesn't happen too regularly. Of course this is politically incorrect and the doctors are trying to make sure I don't have too many "hard drugs" in my cupboard. The truth is I am responsible and not taken to addiction. But there are times when I can't sleep or I feel too wound up to cope with life and I rather pop a few extra pills than get more stress, pain, irritability, depression and stomach problems (I have IBS).

As it is, I managed without normal drugs until 11 years ago when the insomnia struck. I mean; at the time being no one was offering anything that would have made much difference to me. I was offered amitriptyline with the aim of rising the treshold of pain, but it didn't help. I was given Soma but it wasn't until they were withdrawing it from the market in my country that I realized a slightly bigger dose was helpful if I was very wound up in the evening. After the onset of the insomnia, I was sleeping on a benzodiazepam for about ten years (yes, that it worked for me that long is surprising to the doctors). But then... stress and worries caused my condition to get worse and I had to resort to more drugs. I was given Seroquel (25-50 mg) at night because it was not addictive. It's not great but it helps a bit. I recently did some research on whether it affects the libido, but found no evidence that it does. I also take a small dose of Lyrica and also have no evidence that it is harmful in any way. I was recently given a high dose of melatonin (an equivalent to sleep hormone) but I'm not sure whether it's helping me. Because of my acute stomach problems a GP finally prescribed something that calms the stomach, and it makes me a bit drowsy in the evening as I take it at bedtime. The bottom line is... these are drugs, and they could be affecting my sex drive. However... I honestly don't think they have too much to do with it since there are times when my body is quite responsive. By the way, I'm not menopausal yet... there is no reason to believe that there is anything wrong with my hormonal balance. I think stress, worries, insomnia and other psychophysiological challenges are more important.

TRYING TO RAISE THE ENERGY LEVEL

2010-03-30T00:48:00.000-07:00

I always wanted to be physically strong and agile, so I have always exercised quite a lot. Nowadays, the daily work out is a necessity, since I will feel very sluggish and achy without it. There are times when it's not much of an effort, but most of the time I really feel too tired to really get into it. One would think it would increase my energy level, but it's not noticable with the condition that I have. It's more about knowing that it's good for me and that it helps me feel more relaxed in my body. A year ago, I learned qigong as I believed it could make a difference in my energy level. It did help a bit, but it's been difficult to keep up while I've been in this relationship. Although we often do it together, there's just not time enough. On top of managing my daily life as a disabled person, I feel I have to try and find ways of making money. I thus persue projects that I hope will pay off in the future. Of course there's no guarantee that they will, but I have to try... The disability pension is extremely low because I didn't have time to work prior to being "thrown on the skip". Of course, the state is not interested in giving me any quality of life; all they do is just barely keep people alive. This also makes it very difficult to take care of myself; to eat well, pursue alternative or conventional therapies, and to find things that stimulate my mind.

When I got together with my present partner things looked a little better; in fact if he hadn't arrived I don't know how I would have carried on financially and emotionally. In a sense he did come to my rescue, and we have agreed that in life, people should not have to be self-sufficient. You don't have to be a saviour in order to do some good in someone else's life and you certainly need to exchange support for one another in any way you're capable. However... his savings are running out and things are looking bleak financially speaking. I feel great pressure to help rectify this so we don't head for bankruptcy. Together we have more money than we did when we lived apart, but it's still not enough.

So, at this point of our relationship we are quite used to each other and less and less hangups appear. We have dealt with most of our issues of bad self esteem and traumas inflicted on us in past relationships. We have a certain routine in terms of the creative work we do. My stomach problem has receded so it's not so apparent anymore. The vulvodynia and the inner abdomen pain are there but at the moment none of it is very bad (stupid me trimmed my pubic hair a bit but it made the hairs very pointy and it hurts...). I have struggled to try and change my sleeping schedule so that I can get up earlier, and though I am not succeeding terribly well as usual, at least it's not too bad. What's really lacking right now is sexual desire. What happened? Where did it suddenly disappear? I know I don't love my fiancé any less, quite the contrary! But perhaps there's a combination of exhaustion and mild "posttraumatic stressdisorder" coupled with feelings of being in a rut (things are not new and exciting the way they were earlier on) and concerns about work. On top of this I'm very, very tired every day and my insomnia is under control but not managed. I really cannot put my finger on any specific cause for my sense of being disconnected from sexual feelings. I'm trying not to give into despair... but it's not easy.

We are doing everything right as far as I can see. We talk a lot about how we feel in general and in bed with each other. We realized we might need more connecting going on in order to feel more horny for each other. To some extent that's helping. Just squeezing each other tight and looking into each other's eyes. Thinking about how lucky we are to have each other. Being conscious and aware of the miracle that we are in each other's lives and how much we appreciate each other. We try and keep the bedroom cosy and light candles a lot. Sometimes we have a CD with nature sounds (thunderstorms specifically) in the background. But at the moment it's not enough. My limbs are just heavy from a lack of any form of energy whatsoever. And for the record; we cannot afford any specialist help. This of course includes some good tantric course that could be useful. We have to figure this out alone.

DEALING WITH "PHYSICAL FLAWS" AND ALL THE THINGS THAT CAN GO WRONG "DOWN THERE"

2010-03-24T02:00:00.000-07:00

As soon as I reached puberty, I started to dislike my body. It was growing hair and boobs, but it also felt unbearably greasy and the deformed spine had become visible. I also realized after a few years that I looked very bleak and boring without make up. I became very ashamed of myself. It took me a lot of common sense and determination to get over most of my fear of showing me as I am, but to this day it is only a chosen few who get to see how it really is. My partner today is someone who doesn't stop complimenting me for all the things that are good to me and that's obviously a huge relief. My body does look very young and I'm firm due to a healthy diet, exercise and no child bearing (I always knew I'd start to compare with other women much better when I got older...). He expressed great relief in the beginning of the relationship that I did not have hang ups about my body in front of him. My strategy had worked, so to say, because to him it was far more important that I was sexually liberated and natural rather than the owner of a perfect body. I guess to him, the attraction to me made the physical flaws disappear to some extent.

I'm not someone who gets infatuated so I need time to build up trust and become attached to a person. It goes without saying, that we have talked through a lot of trust issues and that they reflect in how close I feel to my partner. As we experimented sexually in the beginning, it seemed as if there was plenty of potential of becoming very close and having the sort of varied sex that we both wanted to have. Yet I was in a lot of pain to begin with because at the point when we met I was very burn out from a very exhausting year. They were social and dating issues that apparently had wound me up so that I was more sensitive to touch. At times it seemed that the sensitivity was good and it was wonderful to be together. I had rather forceful experiences of energy moving around in my body, but it seems to have been mostly energy blocks that came loose. That same level of pleasure hasn't been reached since. The vulvar pain was also becoming an issue, especially as something else went wrong down there. I suddenly got this excruciating pain on top of the normal dull sort of pain and soreness of the vagina. We thought it might have been a tear of some sort. We had to try and give it a rest as much as possible. I was starting to have problems with numbness in my bits. Only much later did I learn from a gynecologist (after extensive digging for facts) that it was not a tear, just a bit of wear from stretching the skin too radically.

In spite of all this, we had many wonderful moments. But it was a constant dance on a tight-rope. Along with all the issues that we had to deal with in terms of starting a serious relationship, there was this constant worry that I wasn't able to perform in bed as often and as well as he might like me to. I knew his ideal was sex once a day but as that was pretty much out of the question, I felt pressure. He told me it was not a problem unless I really didn't want to have sex. That I wanted to but wasn't able to was not a problem and he wasn't going to leave me because of it. He said I should never feel that sex is a performance, and of course he was totally right. He wasn't pressuring me at all but I felt responsible for his happiness as well as our connection. And of course, I shouldn't leave out the issue with my fatigue, though I will have to return to that later. My sleeping was a mess and got worse over the couple first months. I was very tired from that on top of my general state of chronic fatigue. I had to try and schedule sex in my mind. I was afraid it would start to feel like a chore the way it did in my previous relationship. How was I going to sort all these issues out?

Every time we had what one could call good sex, it was different. This was an obvious sign that we were compatible and could have really good times ahead of us. However, I was starting to feel depressed and very exhausted from all the adversities. My partner left for a while in order to pack up his stuff and during that time I worked hard on the sleeping issues. I also did qigong every day, something which I had neglected due to the intensity of the relationship. It seems to build up energy. When he came back, I was feeling quite blocked at first. Then when he fondled me, it felt very, very good... the best I had felt in my nether parts for many, many years. However, as soon as we had penetration the sharp pain came back. It was extremely disappointing. Apparently the tissue had once again stretched too fast and caused soreness.

Since then, it has been difficult. I was suffering from a lot of stomach pain as well - I had tree severe attacks (apparently the IBS) that lasted between a week or three weeks. A few times we've had a good time in bed but a lot of the time, we've had to wait or take it easy. We found a way of getting around the stretching problem by being very careful when he inserted his penis. Basically I have to open my legs as much as possible and be careful with the angle. Then something else occurred... While I had been enjoying his presence inside me despite pain or numbness on the outside, suddenly penetration was hurting me on the inside as well. The gynecologist suggested that we were having sex too often as the penis was irritating my insides (including the bladder, and it was not an infection as I first thought but just irritation). My partner was very upset by this as it brought up problems he has had in past relationships. Once when we were on a trip and I was feeling quite energized, we were trying to have sex but he failed to "perform" because of distracting problems with the bed etc. I was overcome with a sudden feeling of utter despair and depression. Of course he hadn't let me down in any way, but emotionally it felt as if he wasn't always able to be there for me on the rare occasion when I was able to get into sex. Something snapped in me and I seemed to have closed off altogether sexually speaking since then.

MY SEXUAL HISTORY AND HEALTH ISSUES

2010-03-23T02:45:00.000-07:00

As a result of a dysfunctional childhood, I was emotionally frozen for many years. I understood something was seriously wrong and in need of fixing so I tried to open up the best I could. I also didn't have any sexual feelings and no romantic relationships. In my late 20s I met a man who suggested that a vibrator could help fix the problem. I started using a big bulky massage machine - and it did work. I continued using it for years and was very happy to have discovered a means of reconnecting with my body since the body-mind connection was obviously very bad. I also had a natural instinct to embrace sexuality as a self-evident part of life and was dreaming of that perfect relationship that would bring me the sort of pleasure I was able to imagine on my own. Meanwhile, I was working on opening up emotionally as well and was not really able to connect with any man other than very briefly (meaning I tried to gain experiences whenever possible, but didn't really feel much or anything at all during the few occasions that presented themselves to me). What did happen though was that I became more audacious in showing my body to men and became a little less worried about what it looks like. My back is deformed but luckily, no one complained about it. I found instead that I was considered quite sexy. I obviously had a natural knack for sensuality.

All this time I was in a lot of pain. I was mainly suffering from a serious stomach pain and it was draining me a great deal. I also suffered from a serious eating disorder. As I was trying to get used to life and accepting the life I had, I was gradually improving mentally. The physical breakthroughs came when I made a very deep decision not to try and escape life and consider suicide anymore. My stomach pain got considerably better. After 12 years of eating disorder, I also managed to clear it out completely through a combination of a special diet and a lot of inner work that helped open up my emotional blocks. In 1999 I met a man when I was at my most open, and had a very dramatic emotional experience when he dumped me after a couple of months. This lead to chronic insomnia. I tried to manage without medicines for a year but eventually had to give in to the need for a sleeping pill. Around this time I was also diagnosed as having fibromyalgia, although it is not quite as bad as it is for many other people. My muscle tension is a result of the spine chronically being in an awkward position, and this leads to a lot of strain on the nervous system as well. The insomnia is extremely hard to manage since it appears that the nervous system is permanently active and not able to wind down during sleep. I will return to this subject later.

In 2003 when I finally received a disability pension for life I also entered a serious relationship. I didn't fall in love this time either, but quickly grew overly attached to the man who to me was saving me from my very lonely and deprived life. A lot of co-dependency issues arouse and so it was not a healthy relationship. It was the first really important one so it taught me loads, but it also burned me out completely and utterly. Our sex life was quite random because we had too many problems to deal with within the relationship and outside of it. The worst bit was the vulvodynia that struck just as I was entering the relationship. I was suddenly afflicted with the most excruciating nervepain around the vaginal opening, and it didn't go away. Apparently it came as a result of having had an inflammation in the nether parts and when treated with antibiotics after a surgery some weird autoimmune response caused the over-activation of the pudental nerve. I had to try and focus on gaining some pleasure out of our intimate moments inspite of the horrible, chronic pain. It also took about four months of visits to useless doctors until I was able to diagnose myself through the internet and then get confirmation from a specialist. In terms of medicines I tried cortison but not numbing cream. The relationship ended after a couple of years but my vulvodynia persisted and has lasted to this day which is 7 years in total. It gradually got better so that walking or riding a bike wasn't so painful anymore. I was also able to use a vibrator every now and then with the understanding that it would cause some pain the next day. Things didn't look too bad. I was still hoping that one day, I could have a real sex life just like everyone else.

MY MAN

2010-03-22T04:56:00.000-07:00

He had learned from previous life experiences that being a saviour is not the way to go in a relationship. He knew about my ailments but felt attracted to my personality and looks. Of course, he didn't know what my back looks like. Nor do I consider myself particularly beautiful in any other way either, but I guess someone has got to be someone else's cup of tea. He travelled an extensive distance to meet me and despite financial concerns, didn't leave my side for two and a half months. He fetched his things from a temporary location, moved to be with me, and in a few months' time we hope to move to where he lives permanently. It has now been five months. It looks good... I feel safe. For the first time in my life, I feel that I can trust someone not to hold my illness against me, nor try and save me in a co-dependent sort of way.

It is difficult for me to believe that my partner loves me despite my ugly back, chronic fatigue and difficulties in having sex. That's only to mention a few of my challenges. The vulvodynia (an extreme chronic nervepain in the vaginal area) had lasted for seven years and was certainly getting better, but it is still a problem. I expect it's also related to the fibromyalgia, which in my case seems closely related to an over-active nervous system. I will talk more about our difficulties later. For now, I just want to say that my perseverance paid off (needless to say, netdating was extremely taxing on my psyche and left me quite burn out). I found a man who is on my wavelength in every way and who sees and appreciates me for who I am. I do not feel rescued as much as supported, and a maturity that I had not experienced in previous relationships is now present. Emotionally speaking, it has been a roller coaster, but he's still determined to marry me. We are gradually sorting things out and finding ways of living the best life we can have.