That which cannot be seen – the hidden illness

Yesterday, Oriah Mountain Dreamer posted this video on her Facebook page. It is a video with information about ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), an illness most often wrongly rejected as laziness, lack of willpower, hypochondria or a psychiatric or psychosomatic condition. But it is a very real multisystemic illness, classified as neurological disease by the WHO.

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.

Dance joy

I've spent a weekend dancing in workshops with two amazing teachers: Elin Kåven from Norway (who's also a Sami singer – listen to her on Spotify and see her MySpace for song and dance delight) and Dud Muurmand from Denmark. To say that it's been inspiring is an understatement. I love dancing for new teachers, to experience their energy, their thoughts and choreographies, and to learn from many different dancers. To me, that's an essential part of the learning process, or should I say the growth process of becoming and being a dancer. It's a constant growing and learning, practising and drilling the techniques while finding myself (or my Self) in the dance to make the steps mine, to conquer the mystery of dance, of the union between music, movement and emotion for myself. I'm always wary of mimicking someone else, of being one of those unoriginal dancers who copy someone else's style instead of fusing inspirations with something of their own. And I realise that I am, albeit slowly and hesitantly, finding a place for myself in the dance. In the magical wonderland that is Tribal dance.

Actually, the weekend started on Friday, with a tribal fusion show at the Museum of World Culture here in Gothenburg. It was great and showed the huge span of the tribal fusion genre, and was in itself inspiring. Then I did a combinations/choreography workshop for Elin, which gave me some nice new ideas of how to work with steps. What is even more inspiring with Elin is how she has brought her Sami culture into tribal fusion. I've never thought of exploring Sami music for dance, even though my Sami ancestry calls to me. Not as loudly as my Priestess calling, but it's present, and has been for years. And eventually, I will have to explore it. I've seen myself dancing, strong, grounded and very close to nature in a place that I know is somewhere up north, I just don't know where. One of my guides is a small, Sami noaidi, whom I know as Rana and whose presence I have felt strongly during healing sessions, when she beats her drum and mutters softly to herself. I know there is something there, just out of reach, and perhaps it is through dance I will find the path into the lands of my ancestors.

Yesterday afternoon I did a dramatic workshop for Dud, and with my drama background and desire to tell stories, express myself and touch people through all of the creative things I do, it was of course wonderful. I wouldn't say pure pleasure, because going as deep as you do in dramatic workshops in order to access the deep emotions, is often more a challenge than a pleasure. But I love it ♥ I'm not always comfortable speaking about how I feel, or showing it to people, but in dance I do. It's easier to express in movements than in words.

The workshop today was on gypsy fusion, and wow! I absolutely ♥ ♥ ♥ it!!! I love the expressiveness, the grounding, the drama, the storytelling. Very, very inspiring. And together with the other workshops I have found the joy of dancing again. This weekend couldn't have come at a better time. For a few weeks now, I've been struggling with the motivation for dancing, having no inspiration whatsoever and questioning whether I should go on dancing at all. Hitting a plateau, sure, we all do it, but this felt like going backwards. I'm still not a particularly good dancer, but now I feel like I've got a vision and focus again. It's still a long way to getting up on stage and performing, but I'm working for it again.

Dance is life. And dance connects the dots in my life in such a magnificent way.

And the wheel turns…

New design, in celebration of the coming autumn equinox, or Mabon, which is the name of the Pagan festival at the equinox.

The days are rapidly growing shorter, and every night I am surprised at how early darkness falls. I'm still wondering what happened to summer, where did it go? How could three months go by so fast – June, July, August; all gone, in the blink of an eye. It's been a somewhat overwhelming summer, but I have this feeling that I've wasted it, because I can't see that I've really moved ahead. But maybe it hasn't been a time for moving ahead; or maybe the move ahead isn't something that can be measured yet. I know that things have changed, that I have changed, that my path is becoming clearer as the calling grows stronger and I respond to it; but it's actually with a sense of loss I look back at this summer. I feel that my calling, my path, my destiny, takes me away from the people I love, creates a distance between me and others. And I'm not sure how to bridge that gap.

It's like something has changed so much that I still can't see how much, and definitely haven't got my bearings right yet; and whether that is in me, or in my friends as well, I don't know. But I honestly preferred when things weren't this complicated, when I didn't feel so out of place and removed. I don't even have the words to describe it, even if I could talk to someone, which I'm not sure I can. More than anything, this transformation, so far, makes me feel immensely lonely. I hope that will change. Because I don't want to be alone any more. I want my path to bring me closer to the people I love, not further away from them.

I still, somewhere, have that same feeling that my time may be coming that I wrote about last month, but at the moment it feels dominated by an overwhelming feeling of being completely drained, empty. Quite depressed, really. I hope that as we move into autumn, I will get more energy again; more energy to be creative, to figure out what I want to do next in order to dream, create, and manifest my future. And to figure out how to make things less complicated, and find a solution to what seems to be the biggest lesson right now: how to not give so much of myself that there is nothing left for me, and how to learn to ask for what I need. It seems I have to make myself clearer on that point. Honestly, I feel like I (once again) focused so much on giving that I not only drained myself but also forgot what I need, or how to ask for it. Seems I have some work cut out before me.

But today is a beautiful autumn day, the sky clear blue, and the leaves still green. Where are the autumn leaves? So far, I've found one maple tree with gorgeous red leaves, but that's about it. I even saw a blooming dandelion the other day. But there is a definite autumnal bite in the wind, and the wheel is turning…

Here's to beautiful autumn days and stormy autumn nights!