Why any kind of regular movement is necessary for chronic illness
It’s no secret that exercise is not our best friend. Due to pain, and a multitude of other problems, exercise can be difficult and may even cause more problems, which we don’t need. Going without exercise, of any sorts, for a long time, means we become de-conditioned. Although it can be hard, movement is important as, without it, we would feel worse both physically and mentally. This is not to say you should go out and run a marathon or start doing HIT exercises etc. However, you have to move a little here and there.
As someone with Hypermobile Ehlers-danlos syndrome and fibromyalgia, moving my body and not moving my body, both hurt in their own ways. Having both conditions also means I have to be careful when moving as I can very easily injure myself. Not moving makes my body stiff and makes it harder to start moving again. My physio recently said 'the average person can go to the gym, do many different exercises for months and then take a month or 2 off and won't feel as bad’. But someone like me can't go hard in the gym and can't take a month off and do nothing. I have to keep moving, even if it's the smallest things like wiggling my fingers, moving my wrists, ankle rotations etc, to ensure I don't hurt myself and don't become deconditioned either.
I had a good exercise routine going, roughly 3 years ago. After a few months i stopped due to not doing so well mentally. Once I started feeling better, I created a new exercise routine, which went well for a few months but again I needed to stop due to pelvic pain. After this I started stretching lightly and went to hydrotherapy. I loved exercising in the water but again, had to stop due to my bladder. Since then I've tried getting back into some sort of exercise, on and off and it hasn't worked as well, but I did start walking quite a bit, which was great. I then was waiting for, and had my surgery for endometriosis and all that previous stretching/exercise/hydrotherapy work I did went down the drain. 7 weeks after surgery, I tried gentle exercise again, and it was painful and difficult.
There is a lot of controversy in the online chronic illness/disability community regarding exercise. Personally, I think we should all try our best, do whatever works for us, not judge each other for how much or how little we can do, and instead work together and help each other. Movement looks different for everyone but it is necessary, even the littlest moves make the biggest difference!