Exercise is a good thing for people living with some chronic conditions but not for others. ME/CFS can respond very negatively to even mild exercise. Some sufferers can even run the risk of experiencing what is known as a crash — a relapse — which can cause the individual to lose considerable ground, sometimes permanently.
A relapse often occurs within the first 48 hours after the exertion due to post-exertional malaise. This symptom is a hallmark of ME/CFS. ME is myalgic encephalomyelitis, and CFS is chronic fatigue syndrome.
While the illness has been poorly studied, and it's difficult to say just who has it, or just what symptoms are identified in every case, I would venture to say after two decades of having ME/CFS myself, that we've all got this one.
It's hard for me to walk the tightrope between enough exercise and too much. But for many with ME/CFS, this is one tightrope they never have to deal with though they might wish they did. They are much too ill to do more than lift their head off the pillow. Some can't do that, they need someone to lift their heads for them.
I have been living with ME/CFS for 24 years. And I have started over more times than I can count. I start so small it seems ridiculous.
I'll do perhaps two minutes — no more than that — of some gentle stretching. Then nothing for a couple of days afterward. If there are no ill effects, I will do two minutes again, and take a couple of days off again. By tiny increments, as if to fool my body into thinking nothing was happening to it, I gradually increase my activities.
At one time, I had no relapses for an entire summer and was eventually going for two half-hour walks and spending half an hour doing simple exercises — leg lifts, curls, some yoga — and 20 minutes of lifting 3-pound weights, in a day. I would take a day off in between activity days.
This is NOT the typical experience of someone with ME/CFS. I was very lucky that it was mine. It's only happened on this scale for me once, a decade ago. It was glorious. And then something happened.
I don't remember what it was that made everything come crashing down that time. Maybe a strained shoulder or a sore knee. A change of seasons from summer to autumn. I don't know. Some small thing that wouldn't even be noticeable for a "normal" person.
Pain and inflammation set in, my ability to think plummeted, my body felt like I was vibrating on a restless ocean. My personal type of hell moved in for months. All progress seemed to have been lost, and when it seemed the coast was clear once again, I would dust off my determination and my hope against hope, and get back on the bunny slope yet again.
I've gone through a similar routine, in terms of being physically derailed, three times in the last year. This is fairly standard since I got sick a quarter of a century ago. These days, the main offender for me is just pain and inflammation. Cognitively, things have stayed fairly steady and I am able to continue to think, to work, to live.
As I said, people like me are the lucky ones. We are able to stretch our muscles and expend the energy without being rendered helpless afterward.
There is a learning curve to handling this illness that is downright ludicrous. It takes time to come to terms with the inexorable link between so-called healthy exercise levels and our collapse.
While mainstream medicine believes that exercise programs are helpful to us, in my and many other's experience, that has not been the case. Talk to anyone who lives with this condition and you will hear the same thing over and over again — that exercise "programs" are doomed to failure for us. They are bad medicine.
Any activity, or the absence of it, must be determined by the person and nothing else. Being in effect forced to exercise is like being forced to drink the Kool-Aid. Nobody should be able to force someone else to do something that could cause long-term collapse.
As we protect our diminishing health and energy stores, we are often told that we are malingerers, and that if we'd just get up and get going we would feel much better.
But this is so far from the truth. If you have ME/CFS you will have discovered that whatever you used to think was a reasonable amount of activity is way too much for you now. You can lost your ability to stand, to walk, to sit ... to comprehend words spoken to you ...
Sometimes the healthiest activity level is as close to none as possible. Lay in that bed. Close those eyes to reduce sensory stimulation. Breathe.
Yep, that's it. Just breathe. For a day, for a week, a month ... until relief finally comes ... if it comes. You never know, each time, whether there will be relief on the other side, or whether this is the Big One which will keep you bedridden as a vegetable for the rest of your life.
If we are lucky, the balancing act continues. We try to add small extensions to our lives and hope for expansion — slow but hopefully steady — and try to avoid crashes and having to start from zero again.
We take it slow and small, so that we have a chance of being able to hang on to our tiny victories. Every increase, every reclaimed territory is a major victory. Nothing is too small to celebrate and protect with everything we've got — however little that might be.
Visit Jody's website at http://www.ncubator.ca