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3:56am March 10, 2014

I just started, today, running into the problem I thought I’d run into.

Which is, my joints are too loose, and my muscles are too weak, so it’s really easy to injure my joints.  I mean, I’m hyper mobile and I haven’t done any exercise to speak of in six years, whether strength or cardio or anything.  Because I haven’t had the ability to, with neuromuscular stuff and adrenal insufficiency combining.  So suddenly I’m trying to exercise, and suddenly my body is up to dealing with a fair bit of cardio, but my joints aren’t strong enough to take the jumping jacks and stuff.

Oh and I’m tagging things like this with ‘exercise’ or 'fitness’ in case anyone has eating disorder issues or anything like that and wants to avoid these tags.  In my case, I’m not trying to lose weight, I’m trying to get my body in shape in a much more fundamental way – I’ve been in bed for six years and that’s horrible for your cardiovascular system.  I’m still not sure how much I’ll be able to handle, given my other medical conditions, but I’m trying to find out.  So never assume that anything I write about exercise is about weight loss – weight loss is the last thing on my mind.  (In fact I’ve been told if the treatment works I should be gaining some weight again, because I’ve lost 60 pounds to some combination of gastroparesis and adrenal insufficiency.)

So I’ve already got ankle braces somewhere around the house.  I should probably find those and start wearing them.  I’m already messing up my knee joint, so I just bought a knee brace.  I really wish I had more exercise equipment in my house, so I could do better strength training than I’m equipped to do, because that’s what you need to offset lax joints – strong muscles.  I’m not sure how much strength training I can do, given neuromuscular stuff, but right now is a time of exploration to figure out exactly how much of my weakness has been neural junction problems and how much has been lacking any cortisol to speak of.  So I don’t know what my limits are.

My problem now is that I’m incredibly tempted to overdo it.  The feeling of getting my heart pumping again, feels so good that I’m tempted to ignore things like whatever I’ve done to my knee.  Which is horrible and not going to work long-term.  So tonight, instead of doing more jumping jacks, I looked up some low-impact sitting-down workouts and did about four minutes of that.  It didn’t get me the same immediate feeling, but after four minutes it definitely felt similar to a shorter time period of doing jumping jacks.

I’m now worried, though, that my body is just going to fall apart some other way.  Like, I’ll be able to handle some degree of cardio, but my joints will fall apart, or something like that.

But I’m thinking of getting myself a crappy manual wheelchair and retraining my body to use one of those, to see whether I’m capable of that again.  Because before all this got so much worse, I was a part-time manual chair user rather than a near-full-time power chair user.  And I’d like to at least have the option to switch back and forth, when capable of doing so.

My knee hurts.

I have no idea what I did to it, but I know that my knees, ankles, and hips are all prone to various injuries and pain when used more than minimally.  If all this keeps up I might have to actually go to physical therapy and see if they can work out a good way to work with all these limitations.  But I’d rather not do that if I can help it – last time I went to PT I ended up having nightmares about my physical therapist.  He started out telling me things like “Just let me know when it’s too much, and we’ll modify things for you” but when I told him I wasn’t going to balance on one leg, he started accusing me of not trying hard enough, and then telling me that maybe I’m not suited for physical therapy, and a lot of other BS.  When I told him that my body literally couldn’t take hours and hours of exercise per day, he basically kicked me out.  And that was after I’d already started having nightmares about him.

I wish physical therapists could more often be what they’re there to be – not glorified gym teachers, but people who know about a lot of unusual body types and how they relate to physical movement.  He actually told me he wasn’t equipped to deal with anyone who couldn’t stand on one foot… this after he told me that he normally worked with people who couldn’t walk at all.  So I have no idea what was up with all that.  I can stand on one foot now, but that’s after Mestinon and Decadron, neither of which I was on back when I got the injury that sent me there.

But… it would just suck if I was now capable of the cardio aspect of workouts, only to be unable to do them because my joints don’t want to work.  Or similar, if I start running into the actual limits of my neuromuscular condition, or autonomic dysfunction, as opposed to just the limits of the adrenal insufficiency. I hope that doesn’t happen, because there’s something exercise gives me that I don’t know how to name, that’s really important to me at the moment.