Tuesday, April 08, 2014

Well, well, well

So, maybe, you've been wondering what's happened to me. No, probably not. The important thing to report is that I'm well. No more ME/CFS. All gone, done and dusted.

It's been a long haul and while I only had a pretty moderate case it's still been six years plus of pain, confusion, occasional practical paralysis, distress and generally a complete wash out. I feel like I have come out the other end a different person, more aware of my own failings, and strengths I suppose, and I hope more compassionate, aware that what you see ain't necessarily what you get.

I've not written about this before because weirdly within the ME/CFS community writing about getting better, in fact actually getting better, is seen by some as some kind of betrayal. Some people simply deny that it's possible and will claim that anyone who says that they got better never had it to begin with. Even before I found a path to regaining my health I rejected this way of thinking. I find it hard to comprehend how people who do frequently complain about others rejecting their diagnosis as made up can turn around and do the same thing to total strangers whose life they know nothing about apart from one or two things.

Also it's a dead end street - if you define ME/CFS as an illness that no one ever recovers from it becomes self-fulfilling. There have been many illnesses which over history started out as unrecoverable which with improvements in our understanding of our bodies and the development of new treatments have become increasingly successful in treating. Moreover I have met a few people, entirely by chance, that had it and improved to the point where they consider themselves better. Believing that it's unrecoverable from makes it so and doesn't allow for change.

So how do I know that I'm better?

Before 
- I lost entire days just staring out the window because I had neither the mental or physical energy to do anything else.
- I was having to walk with a stick more and more often.
- I woke up feeling like I'd only slept a few minutes, even when I'd slept 10 hours or more.
- Driving more than about fifteen minutes drained me, even on a pretty good day, and as a result it was difficult for me to go out without Nick to drive me.
- Every thought took effort, every activity of the day had to be calculated for cost/benefit.

Now
- Driving to work and back 45 minutes each way is effortless.
- I've been jogging with Kiwi (although her foots sore now so we've stopped for a while), have been riding (a little), and am seriously considering resuming SCA fighting.
- I can just go through my day start to finish without having to consider what to use my limited energy on and what to skip.
- I can go out on my own, even in the evenings, and even on a week night, without wondering if I'll be able to get home.
- I have completely weaned myself off the medication I was taking.
- I get a normal night's sleep and only need a normal amount of it.

So that's good enough for me. No, I was never bed bound, so I certainly wasn't as sick as some people are and I'm very grateful and aware of that. From my reading there are many people with ME/CFS who aren't - about 75% - that doesn't mean they are not sick, or that they have something else. It just means that they're not severe cases, lucky them. There's some work starting to be done to try and sort sufferers into sub groups and if that helps with diagnosis and treatment and getting more sick people well again that's a good thing. I hope that it doesn't result in people being allocated to the "too hard basket" OR the "can't be bothered because they're not the most severe cases" basket. Even those who are only somewhat sick deserve to be well again.