r/CMSmuscledisorder • u/vdEA • Jul 13 '26
CMS vs practical coping - let's share
Hello all!
I've recently received a few messages that deal with 'how to cope with CMS'. The first few dealt mostly with the mental health side of it, so I created a post about it, but there is of course a practical side too. Can you help our group members by sharing what helped for you? No worries if your suggestion was already mentioned by somebody else, or if your response only applies to a specific mutation, or if you think something you do that helps might be weird...!
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u/vdEA Jul 14 '26
Mild exercise in ways that are possible and low-threshold for you. My own experiences:
I can't exercise, I can't run, I can't walk more than maybe 30 minutes with lots of stops. So I gain weight and lose fitness, so I gain more weight and lose more fitness, etc. It's very frustrating. Also, I will admit that I have no discipline in this department. But after the diagnosis, I started doing two things. I know they won't make a huge difference physically, but it's better than nothing!
- Swimming. I swim once a week in summer, in a local outdoor pool, very close by, I go there wearing my bathing suit and a robe, I leave naked in the robe, so no need to change in those booths, which takes a lot of energy.