overcome my chronic fatigue syndrome

I’m now capable of taking aikido classes, and I’m not totally awful at them. I’ve come a long way in the last few years; I still have a little left to finish up, but I’d say I’ve gone from mostly disabled to semi-disabled to out-and-out nondisabled.

CFS… It does get better.

Last time I wrote about this was about a year ago.

I can tell you, if I make this much progress every year, I will be able to fly by 2010. I am kicking so much ass, it is almost unbelievable. I mean, I just rode a bicycle almost 24 miles. (My heart monitor is my friend.) Sure, it was a tandem, and Josh took up some of my slack on the hard bits, but still, that was completely outside what I would have thought possible for myself. I wonder what impossible thing I will do next.

There are a few things I’ve had to learn the hard way this year, but fewer than in previous years. I was never much of a drinker, but now I’ve stopped drinking entirely—even half a glass of beer, I’m finding, leaves me feeling lousy the next day. (Might be a glutathione thing.) I’ve gotten a little more cautious with sugar, too, but it doesn’t seem to be as big a deal. I’d thought before that alcohol and sugar might be problematic, but their effects were somewhat obscured by the general CFS crappiness.

I am lucky – luckier, I think, than many people with CFS/CFIDS/ME – in that I have great practical and emotional support from my husband Josh.

Last year I listed my tasks as “build a more consistent home practice, to avoid useless drama, to eat healthier food, and to enjoy and develop the abilities I have.” Well, my home yoga practice is still pretty flimsy, but I’m doing well with the rest of it, particularly “avoid useless drama”. I’m not sure that’s really such a CFIDS-related task – my experience is that it is less stress-related than I’d assumed – but it’s been a fine idea.

One mystery semi-explained—I’ve wondered why it’s tiring to take the bus. I mean, what the heck? I am generally sitting down on the bus. Being driven around town in a car is not a big deal; why’s the bus a problem? (I don’t drive. And believe me, that’s a good thing for everybody.)

Well, the bus thing is probably because I have wobbly, wonky, hypermobile vertebrae. (And a few stuck ones. Yay.) According to the PT, my back muscles are working much harder than they ought to, just to keep me upright. On the bus, I’m not strapped in, the back of the seat is relatively flat, and there’s a fair bit of jolting as the bus starts and stops; in a car, I’m strapped in, further stabilized by the seat, and get less jolting. So on the bus, all sorts of stabilizer muscles are getting overtaxed.

That’s my guess, anyway. If I’m right, this is cool, because that means my PT work may very well help me get around town a lot more easily. I don’t even have to make a new plan; I’m already working on the right stuff. Sweet.

I remember reading that CFIDs is correlated with joint hypermobility. Well, chalk me up as a data point.

I’ve been disabled or semi-disabled with CFIDS since late 1996. Allopathy wasn’t getting me much of anywhere, so in late 2003 (a few months after getting really good health insurance at long last) I carefully selected a local naturopath. She put me on a regimen of supplements that includes a whole lot of antioxidants. (There’s some interesting research going on in that area.) She also counseled me about my activity levels, persuading me to avoid crashes as much as possible; I mentally labeled 2004 the Year of Not Being An Overactive Idiot.

I’m not saying I’m healed – there is no magic bullet – but I’m having many more good days and my good days are getting better. I can do the laundry now and can usually take the bus around town without getting unduly exhausted.

In early 2004 I found a “Slow Beginners” yoga class that doesn’t involve a whole lot of standing up. After a few months of that, I was ready to start doing some gentle Pilates. Cautious but steady is the ticket. I’m loving having more strength and flexibility.

My CFIDS-related tasks now are to build a more consistent home practice, to avoid useless drama, to eat healthier food, and to enjoy and develop the abilities I have.