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LH's avatar

What’s your plan from here, Paul? Are you going to be a 5k runner now, or do you still have an objective to increase that distance? Or are you thinking of maybe backing down? I’m just curious… I have no idea what the right path is.

I recall my mom, whose had fibro most of my life, having episodes through the decades where she was able to get really fit. It required a disproportionate level of effort (time, energy, capacity) to yield these gains, and she also used much more medication to get through the process, but she always said when she could finally get through that she felt much better. But the ability to hold onto it was always much more fleeting than for a typically healthy person… lapses cost more, effort yielded less, time commitment was much greater (due to the exercise itself and the necessary recovery time), and the progress was always so slow.

I know for myself, whenever I lose some of my capacity… right now I just walk a lot, so if I walk less for a while, getting that back is so much harder than it should be. So I always make sure to protect that time, but this whole song and dance makes exercise almost a full time job for people like us… who also have full time jobs. It just seems like such a narrow path. Much narrower for people with the worst of PEM, etc (much worse than me)

Anyhoo… thanks for hitting yourself for our (and your) education.

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Misty Burriss's avatar

When I was new to the disease of Isaacs Syndrome and first learned that one of the common symptoms was “exercise intolerance” I laughed out loud. My father’s voice in my head said “nice try but that’s clearly a lazy person’s attempt to get out of being responsible for their own health and fitness.” It wasn’t going to happen to me! I was a gym rat, a cyclist, a hiker, yoga doer, loved martial artsy fitness workouts, and doing more pushups than anyone expected an old lady could do. I didn’t just walk my dogs every day, I ran them, at least two miles.

But suddenly, since onset of symptoms I was flabbergasted when I found I couldn’t push a vacuum cleaner. It got to the point that I would have to go to bed after my morning shower. I had to give up everything except my dogs still demanded I take them out daily for some kind of exercise. So I’d drive to the country and park by my old school that sat on a block that was one mile square. I walked along one road to the corner and then turned to the next corner where we’d turn around and head back to the car. The way back took almost twice as long as the walk out and many times I’d be crying in agony but proud of myself for not giving up. Actually, I couldn’t give up because it wasn’t like I could have anyone come to get me and drive me a half mile to my car, that would be a big no way.

The rest of the day I’d rest. I’d also join my Facebook friends in the Isaacs Syndrome support group for The Over-Did-It-Again Club. It was never considered a mistake to “over do it”. It was never thought of as a “mistake”. We never considered ourselves as making a bad or wrong decision for having pushed ourselves.

We called it “management”. We pushed ourselves and then rested, pushed ourselves and then rested. We accepted the pain and fatigue and non-stop twitching muscles and painful cramps. We weren’t trying to solve the problem. We were just trying to stay fit and plan ahead for the pain and give ourselves time necessary to recover.

“I’m not going to go grocery shopping tomorrow because I’m going to “overdo it today”. Having the support group made it all possible. There was no judgement and no self judgement either. It was just balancing.

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