Wednesday, 12 January 2011
That which cannot be seen – the hidden illness
ME is not easily diagnosed, and there are not two completely identical cases. As many as 25% of those affected are fully disabled, some housebound or even bedridden for years on end, while others may suffer in varying degree. There is no entirely known reason, although various viruses are believed to cause the initial infection. Most recently, there have been discoveries indication a link between ME and MLV retroviruses. There is no decisive test that confirms ME, even though some claim that MRI scans can show changes in ME patients that aren't there in normal, healthy brains, and there is, today, no cure.
So why am I writing this? In mid-December, my GP diagnosed me with ME, after various appointments and blood tests during 2010, as well as ways of trying to exclude other reasons, such as seeing if I'm on a too high dosis of thyroid hormones (which I've been on since 2000 due to hypothyroidism) or whether the fatigue can be due to gluten intolerance. None of which I am. During my first appointment with my GP, who turned out to be unusually knowledgeable about tiredness, sleep, and similar problems, when he heard my medical history, me mentioned ME/CFS after about five minutes, and now it seems he feels that it has been confirmed.
Here's my background. In september 2004 I realised that I was recovered from anorexia. *fireworks, champagne corks popping* In early March 2005 I did my Reiki 1 and 2 course and initiation, followed by step 1 of tactile massage training, and during the second day of massage training fell ill. I took that as a sign of my immune system being finally functioning and somehow rebooted from a weekend of healing, and as a sign of recovery. However, the cold/flu I got was nasty and lasted for weeks. Since then, I have never fully recovered my strength; I have never felt fully rested or energised, fatigue has been a constant companion. I can have a couple of good days, followed by days when I'm so tired I feel feverish, nauseous and can't think straight. And it's not the sort of tiredness I can rest away. For years, I dealt with the tiredness in three ways: Ignoring it, thinking I was being lazy or lacking in willpower, or that I was pushing myself too hard and thus over and over again depleting my energy. I thought it was burnout syndrome, or residual stress after too many years on the dark side of the mirror (ie eating disorder), and tried to rest more, focus my energy better etc.
I've tried to cope, I really have. And I have been active: managing my company, never able to work full time during an entire year, but at times more than full time, doing my first spiral in Glastonbury, spiritual work, immense growth, writing, selfhelp work, dance, exercise etc. As the economic times have changed, less work has come in, and the stress gotten worse. That's when me being so tired has become a problem, although one that no one else has ever noticed. Because I do my work, as long as there's work. But the rest: marketing, finding new clients, writing letters and getting myself "out there" to various companies/potential clients – has been left behind. I've scolded myself over and over again for not doing it, and hate to say that I just haven't had the energy, because to most people, I am full of energy. And because I am afraid to hear what I have also been told: that I have to do what it takes and that I can't keep procrastinating. Well, that's what I've been saying to myself, too. But lack of work means constant financial stress, anxiety, and a tiredness beyond belief. I should be on partial sick leave, and I so deserve a chance to once and for all be allowed to rest, heal all the old stress, and be given an opportunity to get back, but I can't. I have bills to pay, loans to mortgage and a tax debt that might ruin me. The sick benefit I could get is calculated from my income, meaning it's low. And it's getting worse. Every cold takes longer to recover from, my mood swings from good to really, deeply low and anxious with the alternating energy levels – to a point where a friend almost suspected that I was bipolar – and I don't know what to do. Because I need more work coming in, or another form of income.
Then last winter someone, I think it may have been my brother, mentioned ME and shortly after that, I realised that I actually know exactly when I got this tired. It can be pinpointed to a virus infection. From then, I saw my GP, waited for months and months to see him again, and now, this. I still don't know whether the diagnosis is there in my medical chart or not, or if I could actually get some form of help or benefit for it. So far, I've gotten medication against the fatigue, but while that works pretty well, it means I overstretch my physical boundaries and overexert myself. And I don't know where to go from here. Would having a diagnosis help me get some sort of disability benefit, or other form of support? From what little I have read, I can see that several of my other so far strange problems can actually be common parts of ME, which gives me some understanding, but I am still not sure. I hope to see a specialist in 3-4 months' time, and take it from there.
My GP said that I must have a lot of willpower. I guess I do. Giving up is not something I know how to do, and I am terrified of becoming a victim, someone who hides behind a diagnosis instead of trying and doing the best and most I can. And yes, I have problems accepting this. That it could be close to chronic. That it could be without a cure. That the most I can hope for is learning to live with it, hoping that it will in time get better instead of worse. I can't accept that I wouldn't be able to control it, or make it go away. That no amount of positive thinking will make it good. Just better. I know that I am high-functioning, but compared to who I used to be, I am beginning to feel so tired that it scares me. And this isn't something people can see. It's hidden, and I hide it well (caffeine, makeup – being a makeup artist sure helps, tons of guts and "never give up, never surrender", and if needs be with medication), and I do my very best to deny it for as long as I can. When I am so tired that I literally shiver, feel feverish, nauseous, can hardly eat or barely stand up long enough – I stay at home, hidden behind the computer. That is how I cope.
But this is one step in my acceptance process: writing about it. Getting it out there.
Tuesday, 12 October 2010
Bye bye, Blondie?
But still, from time to time I try to go back to find the natural colour. It would be so much cheaper and easier and better for my hair if I could settle for natural, but it never lasts. Part of me really wants to be this nature child, who's just… well, natural. But I'm not. I'm a nature child in other ways, that is in my connection to nature, but I'm very apparently not a nature child as in staying natural in hair and lack of makeup and so on. So why deny who I am?
Which means, I guess: Bye bye, Blondie!
Friday, 17 September 2010
Yay me!
Of course it didn't happen overnight; what had been an integral part of my life, at times the most important part, the one thing I desperately clung to, didn't suddenly disappear. It had taken years. But that very night, whose date I don't remember, marks my declaration of recovery, as it was then that I realised that my life was no longer controlled by the eating disorder. I wasn't controlled by it. I was free. I am free.
I still prefer to think of myself as free, rather than recovered, for the simple reason that I never regarded myself as being ill. I don't know what it says in my medical files; whether I was ever certified as being ill, or for that matter recovered. But it doesn't matter. To me, the eating disorder, all those anorexic years, weren't an illness; it was my way of living. What probably initally started out as a coping mechanism, that became a way of life, that became a disorder that took over my life and almost killed me. But not an illness or sickness. It was more than that; it was my entire life. It was what I grew up with, what I matured in parallel with, something that had always been there. I didn't have a "before" to compare with or fall back on; I don't remember a before, I was too young then. So my way out wasn't about rehabilitation, but habilitation; it wasn't about finding a way back to a healthy life, but about figuring out what a free, recovered, healthy life was for me. There was no key to this particular equation; I had to find it for myself. I had to create, or discover (rediscover?), an identity without anorexia. And, for that matter, without a whole bunch of other things. It took me a couple of years, but I got there. Obviously.
Everything wasn't great that September night; everything still isn't. From time to time, I go through periods of anxiety, I tend to get depressed when I get exhausted, at times I've got a head full of thoughts about whether or not what I'm feeling is normal. I'm human, everything will never be great. But I no longer self-destruct when I feel bad, I don't place my feelings on the plate before me or in the loo. I'm not eating disordered any more. The dark mirror has lost its grip and lure; I am free.
Thursday, 8 July 2010
Depression awareness
Depression is not a sign of weakness, it's a sign you have been trying to be strong for too long. Put this as your status if you know someone who has/had depression. Will you do it, and leave it on your status for at least an hour? Show your support.This status update appears every now and then on Facebook, but only today did I use it myself. I don't fully agree with it, as depression is not merely a sign of having "tried too hard"; it is a physiological reaction, a matter of an imbalance in the neurotransmitters. Whether the reasons are endogenous or exogenous, a clinical depression is not merely about "being blue" or sad. And it's not something you just snap out of with positive thinking; not when you've goon deep down.
I spent years and years in deep depression, trying endless medications while trying to be strong and hopeful and not too depressing. I learned that people generally have no clue about what depression really is like; what it's like to pretty much have an inner Dementor who sucks all positivity and happiness from you, drains you of energy, makes you slow, dull, lethargic and infinitely sad – but not sad as in crying or sorrowful, but sad as in devoid of feelings. I felt that it made life grey, dull, muted, and that trying to get myself out of the bog every day was like swimming against an incredibly strong current – I could do it, to a degree, but it was draining. Eventually, after a dozen drugs that never really worked, and ECT that also didn't work, I found medication that finally did the trick. The change was... undescribable. One day I realised that I hadn't been depressed for days. That was 10 years ago.
I went off medication after 4 years, which was hard and took a long time, and in those 6 years, I've only been back on it once, two winters ago. It didn't work as well this time, and I realised that I wasn't up for the side effects, or for becoming a human guinea pig again, trying my way through the various drugs. And the truth is, I haven't gone as deep as I did then. Something changed. Maybe it was that my neurotransmitters work better when I'm not anorexic, maybe the chemical imbalance cleared, maybe I've learned to read the signs and do what I can to beat depression early on. Because while I have no clue how to create a lasting effect on the neurotransmitters, I believe that it should be possible to combat depression with my mind. If I do it early on.
However, I suspect that I am susceptible to depression, and have my annual bouts of it, although like I said, never as deep. They range from a couple of days in the bog, really low and not really able to think too clearly (often induced by a period of stress and fatigue), to months of being low, dysthymic. Because I'm really not good at following schedules and lists and stuff (meaning I forget them), the checklists and things to do when I notice the signs aren't as helpful as they could be. I just try to get on with life like I normally do and accept that things are the way they are right now, but that it will pass. Trying not to be too hard on myself. I am seriously trying to figure out how to create a system that will remind me of being aware of the signals and of what I can do, and hopefully I'll figure something out. After all, I did learn to notice the ED alarms before things start to go wrong... What else can I do?
Sunday, 3 January 2010
The self-doubt process
Friday, 1 January 2010
2009 - an exciting year
Another year at an end. 2009. It's been an overwhelming and challenging year, financially extremely stressful, but all in all a fantastic year. Somehow a lot of pieces have fallen into place, I've found the way home in oh so many ways, sides of me that lay dormant have reawakened. I'm more whole than ever without really being whole, have gained important insights that have led to big decisions, and I have a confidence and faith in the future that I think I've never had before.
Winter
The depressive fog lifts somewhat, but the anxiousness stays on. I'm semi-seriously considering whether to enter the dark mirror and become anorexic again, but I choose health. There really is no option and thoughts are only ever thoughts. I still wonder whether I will always live with this darkness, this dark passenger of mine.
When you've lived in the dark for so long, is it ever really possible to live in the light? To shake off the darkness and go on as if you'd never seen it, tasted it, felt it, lived it? Can it be that there are some wounds that are too deep to heal? Will there always be a shadow? Will there always be scars of darkness that might open again? When you've lived in the dark for so long, can you ever be free?
The Twilight Saga offers me some much needed escapism and makes me feel alive in a way I haven't done for long. My emotions are reawakening, stronger than ever, as is the longing for love. A longing for loving in the way I know I am capable of; deeply and in a way that changes me into my soul. I realise that I've never been really in love, never quite ready for a unconditionally open my heart and let love transform me for ever. I decide to dare to dream without trying to control the outcome. Turn 35. Write more. Decide to go back to dancing. Get another cat, my little Bonnie.

Workstress over the next book. The spring term of Tribal Fusion classes begins, and for the first time in 15 years I am back in a dance class. Since it's a completely new style I have no demands on myself to excel and can enjoy just learning something new, as a hobby. That's a good thought, but it doesn't last for long. I am soon hooked but feel useless, as it's a new way of moving and I'm not mastering it as soon as I want to. Struggle with my demands on myself and really try to keep them at bay and just enjoy myself and the magical union of music, dance, and body - it's just so much fun! End therapy.
Feel more and more at home in the BDSM/fetish world, meet M and experience definite physical attraction. I'm still glad to have met him, because there are a lot of less reliable people in this world. Then again, I'm 35 and know myself a lot better than most other people around.
Spring
Dance, sex, fun. A simple relationship, but I'm not in love. Tired and stressed to my breaking point. I'm growing in acceptance of who I am and what I like. Grieve over friends who can't accept that friendship has to be on equal terms; I can't dance to someone else's tune, I can't hang out if and only when it suits them, and I won't be controlled. By anyone. Betrayal by someone I trusted. I'm learning to let go of other people's demands and expectations of me, prioritise what I need and try hard to not be affected by the reactions of other people when I place myself first. Which is of course easier said than done. Realise that I can let my guard down and be weak and vulnerable if I feel safe.
Make up jobs, easter ball, dance. Dance workshops during the Tribal Powertrip Weekend - I feel nervous and a complete newbie, but am proud to say that I pull through. The dark/Gothic fusion workshop is heaven and I am absolutely reminded of why I chose to dance fusion. Invaluable girlfriends. Am tired and restless, absolutely understimulated. Insomnia, lack of sleep and lots of doubt in myself and everything else. M acts distant and dissociative.
Dumped again, once again get a strong feeling that there's something wrong with me and I'm incapable of loving. (Even though I didn't love.) Some girlfriends are angels that rescue me. Want to go comfort shopping but have a couple of new piercings done - just as well to do them when there's no-one to disturb the healing process. Realise that my reaction to being dumped concerns my fear of being forever alone because I am not good enough and thus unlovable; not that I've lost the love of my life. I haven't. Massive anxiety, lots of weight thoughts, but I keep myself busy in order to escape some of the feelings when there's too much going on in my head. Do make up for a commercial film. My darling girlfriend S has her wedding party. Eva Brunne is elected bishop in the diocese of Stockholm and Sweden has our first lesbian bishop. Bonnie is in heat and sterilised. I miss the first classes of the summer dance courses because of work; it's an uphill struggle with myself and a body that seems to refuse to obey. Anxiety and depression are constant companions, but I can almost ignore them at times. May ends with summer warmth and a more positive feeling.
Summer
Tattoo #7, which I'm madly pleased about. Am elected into the SHEDO board and am back in eating disorder and self-harm support. Discuss spirituality with lovely dance friends and realise that my spiritual side is stronger and most definitely active again, and once again a natural part of my life. It has been very lonely to be the only one around with pagan(ish) beliefs. My Priestess self is part of me and no longer to be denied. Awakening in the importance of living in my truth and being completely true to myself. Open myself to the power of transformation and sense that there is a huge change under way. Feel a bit like a butterfly waiting to break through the chrysalis; waiting to find the space to spread my wings.
I take the last step in coming out as a lesbian. It's been a long process, and I have no idea what took me so long. It's really not a big or overwhelming step at all, nothing traumatic. Simple, natural. I really can't deny myself into thinking that I'm bisexual or want a man any longer, because emotionally, a man hasn't done anything for me in ages. And whatever they can do, a woman can do better. As soon as the final piece falls into place and I 100% confirm my orientation to myself, I hear Rhiannon saying "Finally. What took you so long", and I realise that She showed me this a few years ago, and quite clearly so. I guess I was just too stuck in the normative bog to fully understand. But now I am wholer in who I am, my preferences, my identity. I'm not saying that I'll never have sex with a man again, because sometimes things just happen, but I make a distinction between sexual acts and sexual identity.
Dance moves higher and higher on my list of Important Things - did I ever really think that I could keep it a pastime, a simple hobby? No - I dance for life and live to dance, but I struggle hard with my enormous demands and expectations of myself, and the feeling of being too bad, never good enough. Put on too much weight during the summer break; and I had been so happy with and proud of my body during spring! Huge battles with myself during the last summer classes; when I look at myself in the mirror I only see this fat, tattooed chick who just can't get anything right. Cry on the bus home and seriously consider burning my dance gear and burying this whole thing, because I am just one big failure. But I calm down, suck it up and decide to give it another term before I give up. Because I can't quit and I have a feeling that things will get better, I know I have more potential than this, and also - I'm hooked. Addicted to dance. The mental training for dancers workshop makes me realise that I've made the right choice and helps me to focus and set goals for the term.
Autumn
Dance, dance, dance. SHEDO, support work. Financially everything is getting so much harder, not least when my publisher tells me that they're dropping most of their fantasy authors, among them "my" author. In one go I lose 50% of my yearly earning. Youngest sister turns 30, I dye my hair black. Brother D and his wife E have a daughter - my 4th niece.
Dark & Tribalicious weekend. Amazing workshops for some of the best dancers and teachers; am in awe over the fact that I'm not a complete failure. I practise for almost an hour a day, have goals and am determined to fulfill them. Dancing is fun again, joyous. Yes, I have expectations of myself, but also more patience. And no matter how bad my day has been, when I start dancing it all goes away and I go into my dance place. Feel like I'm making progress and try to keep my expectations realistic, which is always easier said than done. Suddenly it's like all light falls on my flaws, the things I need to improve, rather than the things I do right; and I feel like I'm stuck and not moving forward, which I at the same time know I'm doing. I explore my own expression, my energy in dance. Love it.
My spirituality grows stronger. I feel Rhiannon's presence clearly, am open to loving and being loved, feel the kundalini energy stirring and rising; I know something is coming. I still struggle with the idea that someone could be interested in me - which I realise when a friend asks me if I think another person is interested in me. What, me? Nah... I wish but why would anyone be interested in me? Try to let go of the thought of how, who, and when love will come and to just be. While I long to fall in love and meet someone, I am happy to be single, to not have to explain to anyone why the dance is SO important to me. No-one objects to anything I do or asks me to explain my priorities; I call the shots in my life. I realise that I really can't have a serious relationship with anyone lesser than an equal, and equals are hard to come by and far between. Am asked whether I arrange ceremonies or workshops and start thinking about that more seriously. It feels like a natural step to take, the main questions is How.
New friends, re-emerging depression, fatigue, anxiety, positive thoughts as an antidote, New Moon. On October 22 the Council of the Swedish Church vote to keep the right of marriage and thus say yes to same gender marriages. VICTORY!
Winter again
Dance, dance, dance. SHEDO. Frustration that gives birth to new thoughts. I realise that I have a happy basic attitude to life, that I am intrinsically happy. Happiness is a state of mind, not dependent on material wealth or things we have. Which explains how I can be happy even during moments of unhappiness. I keep growing, becoming clearer in what I want. One by one, pieces fall into place, in the midst of intense financial stress, I find thoughts of wanting to do something else, something more. Something new. A big change is coming, the costume of my life is growing to small, I need to break free to spread my wings, blossom, shine, reach my potential.
The desire for exercise reawakens, I get kicks from positive energy and possibilities, begin to recognise myself. Find a soul sister, a sister of fate and experience the weirdest mirroring ever. Confront my memories from being a gifted child in a school system that failed to see or meet my potential, reaffirm and recognise my intelligence. Feel better when I have more intellectual/mental stimuli. The anxiety is always just around the corner and I can't always distract it completely, but am doing OK. Calm Christmas, am growing aware of how much I've changed this year and how I'm feeling more and more like Me.
In short, this was the year when I returned to dance with the same love and passion as when I left it, 15 years ago, but with an infinitely deeper self-knowledge and a creative and artistic need for expression. And I found the perfect combination of dance and my dark side. I've accepted and recognised more and more of me as I find things to recognise, and have let go of more denial.
I'm so grateful for what this year has given me, and what I have accomplished, and have a deep understanding for that the growth of this past autumn is just the beginning. I look forward to 2010 and to wherever this path will lead me. Life is good, and can only get better.
Sunday, 12 July 2009
Breaking the box - or just refusing it?
I believe in trying to accept the things I don't understand, and most life choices I don't like, and I absolutely believe in not having to comment them. There are of course exceptions to what I can accept; I will never accept that people choose to harm themselves or lead destructive and self-deprecating life styles, I will never accept intolerance, paedophilia, abuse of animals, women and children, chauvinism, bullying, and fundamentalism, and I have no problem voicing those opinions, which I don't see as a problem, either. But this thing of seemingly having to speak every single thought out loud, no matter how irrelevant and negative it may be, that is something I don't understand. Usually, I just refuse to react to it.
I like breaking people's boxes, I like messing with their preconceived notions of normality and their judgements of me. I like when they have to reconsider and - hopefully - realise that there is more to life than they may have thought. But at times, I am reminded of how different I seem to be.
I'm not normal, and shy away from normality in the sense of neat little boxes and labels, but the things that feel natural and normal to my identity, can be box-breakers for others.
But in what way?
I'm a Goddess follower, I am in Her service as Her Priestess (which is not the formal title of the Christian church, but more a term for my commitment to Her - in lack of a better word); but I don't really relate to the term Pagan.
I love body art - especially tattoos and piercings - and see them as a means of self-expression. This may not be uncommon anymore, but I apparently don't seem like "the type". Guess what? I am. There are more patterns on my body that have yet to rise to the surface and be captured in ink by great artists...
I'm into sex/playing that may seem kinky and perverted to others - BDSM, dominance/submission - have found that immensely empowering and rested gently in surrendering control while still keeping the ultimate control of the situation. (If any Dom doesn't respect a stop word, it's not BDSM any more, but abuse and rape.) It is something that resonates with me on a deep level, and that feels very true. But many normal people frown upon it and would never admit the kinky stuff that goes on in their vanilla bedrooms.
I'm not heterosexual, and haven't been since before puberty. For the longest time I defined myself as bisexual, but with the years I've come to realise that it is not an accurate label. Even though I may play with men, do sessions with them, I am not attracted to them. Sex with a man has always left me feeling unsatisfied, even though the men in question have (too) often pointed out how wonderful it is. I guess there's some spirit work involved, channeling the Divine through the mind/body connection of sex, but to me that actually feels more like work than the pleasurable rapture and passion that sex should be.
So last week I took the plunge and decided that it was time to stop denying the obvious: I'm gay, not bi. The change is purely semantic in nature, but that little change of a prefix is a huge one to many people. For me, it's just stating the obvious and I'm really quite surprised that I didn't see this more clearly sooner. Rhiannon did point me in that direction more than two years ago, and only a week and a half ago, when relating Her message to a couple of friends, did I finally hear what She had been saying. There is more to be said in that matter, but in time.
So as for boxes, I'm not a fan of them. I don't like limitations to who I am; I spent far too many years building a prison for myself to ever let that happen again. I am free now, and I will not let anyone tell me how I should be or that what I do or am is wrong.
Addendum, July 13: A friend drew my attention to how I apparently stand out a bit among normal people because of the way I dress and the music I like as well... But is that really relevant? Music and dress style seem to be areas in which it is accepted to deviate, because then people can usually see what subculture you belong to. Usually, not always.
