Wednesday, 18 June 2008

On Yoga and M.E.

I spent this last weekend on a course entitled "Teaching Yoga to People with ME and CFS". I haven't been on such an uplifting, insightful and balanced course in a long time. It helped me to understand who I am outside of having ME, Fibro, even outside of having scoliosis. To step away from the illness and become Rachel once again.

There were 8 of us on the course, 5 of us who had ME, all of us who had suffered from some form of chronic fatigue at some point in our lives. Particularly interested to finally discuss the difference between what ME is and what CFS is. The conclusion being that the black dog that has followed me around for the last 18 years is ME. This is a tiredness that is more than tiredness, that cannot be described, that is coupled with an inability to sleep and a brain working like you've done 5 lines of coke washed down with 10 double espresssos, never knowing if you're hot or cold and never knowing what's going to bring this all on again next time. CFS on the other hand is more of an umbrella term for the chronic tiredness (times 1000000) that comes about as a secondary condition to things like grief, MS, cancer, breakdown, fibromyalgia (yay double whammy for me!!) and depression. Although talking about these definitions made me wonder about the helpfulness of them. Of the 5 of us with ME on the course I was surprised by the wide variety of symptoms we all displayed. I have never really suffered from the "brainfog", the lack of concentration that makes it impossible for ME sufferers to read a book, or follow a simple TV series. I count myself as blessed for that because without books and cake I don't know how I'd have got this far! Nobody else had the pain to the extent I do, the pain so bad that some days you can't get down the stairs. A very fine line between the muscle ache of ME and the pain of Fibro. So no wonder this is so difficult to diagnose, no wonder it took drs so long to even acknowledge it's existence. Plus of course, from a yogic perspective by labelling our suffering we are giving it a past and a future. We are making it something real. The point of using yoga as a healing tool is to be in the present moment. This is where I am today. Accept that. How I was last week, how I will be next week is of now import right now. Accept this is how we feel. Who cares what it's called! For purposes of reference however the black dog will be known as ME for the rest of this post!

ME comes out of nowhere and hits you with a hammer (in my case it all started with a six week long sore throat) and can start with a virus, with a breakdown, with a sudden change in your life, with toxins and pesticides (as I've always suspected mine to have been), or with just not listening to your body when you need to rest.

We live in a material culture; one in which having the incredible job, the incredible house and the plethora of material possessions that go with it make us who we are. But to maintain these we need money, so we need to keep working harder and harder. It is frowned upon to have time off when we're sick so we plough on and on and on and never rest properly. When we do get a break, we cover the exhaustion with the TV, or a bottle of wine or too much shit food. Then we crash and burn. I should know, I've been there enough times.

Which is why I gave up work, which is why I eat only organic, which is why I try and nap in the afternoons. Because slowly slowly I want to be able to come to an acceptance of my illness. To come out of denial (which I suspect I've been in for nearly 20 years), to grieve the youth I perhaps didn't quite get to have and accept myself, as I am right here and right now, using yoga, breath and meditation. I'm beginning to learn the importance of pacing myself; a person with ME should do only 50% of what they think they are capable or they will have no energy reserves for the rest of the week. I'm paying the price for years and years of running on empty but feel I have a second chance to start to bring myself into a place of healing.

I affirm to look after myself and bring myself into a state of acceptance.

Whilst exhausting (the irony! A course on ME and none of us can get out of bed afterwards -- plus I had mums and babies this morning) it was very rewarding, I met some fantastic people and have some great opportunities from it both for my own practice and for furthering my career.

You see that competitive Type A personality never dies - it just gets ME!

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