Avoiding a wheelchair is a really big part of my life

Last year, I spent some time seeing a pain management team, which included a pain management physio. This was a SPECTACULARLY crappy experience, ending with me being handballed off to a psychologist before my physio would work with me again.

Of course, I’ve since finished therapy, having worked out that my feelings of anxiety and impending doom are actually a physiological problem, not a psychological one. Basically this means that I’m fucked, but that it’s my screwed up nervous system’s problem, not my brain.

My brain is fine, thank you.

The reasoning behind me needing to see a psych was something along the lines of needing to get my license, to make getting into the city easier. But I’m too scared to drive because a major dislocation while driving is life-threatening, at best. Even with braces on, I dislocate in and around them. Which is so much fun.

All of this is to say, I’ve been dumped by my physio, who hasn’t been in touch since sometime last year. I’m sure as hell not chasing him up, as his reasoning on EDS was pitiful at best –

[Joint dislocations shouldn’t hurt because they’re not causing any trauma, because you’re bendy already. It’s just a fear response to perceived damage. To which I asked what about the torn muscles and ligaments that sometimes accompany bad dislocations? He changed the subject.]

– and I decided that he was simply an arsehole.

He was my third physio – the first one deciding that I was too complicated for her to manage and sending me away, the second being lovely, but part of the public system and I have no idea how I fell through the cracks of her system, and the third being a fuckwit.

Now I’m pregnant, which requires management by a good physio.

Which I don’t have.

Insert maniacal laughter here, because of course I don’t have a physio when I need one. OF FUCKING COURSE.

It’s like the time I had to cancel an orthotics appointment because I’d dislocated my knee the night before and physically couldn’t walk. They said “we’ll call you back with another appointment” and I never heard from them again and the next thing I know, the clinic has moved and I am lost in space.

But I digress.

Pregnant with Isaac, my pelvis started to separate sometime after week 20 of pregnancy, causing excruciating pain. The pregnancy physio associated with maternity saw me, put my pelvis back together, braced me and gave me the info about my joints that I needed to get my diagnosis changed from Chronic Fatigue Syndrome to Ehlers Danlos Syndrome.

I am 10 and a half weeks pregnant now and I can feel my pelvis falling apart, which is causing a trickle down effect through my lower back, ribs, hips and knees. I was hoping to avoid this until after I’d been referred and seen by Maternity at the hospital (with access to their, frankly amazing, physiotherapists), but here we are.

At 10 weeks, I am falling apart.

BUT (and here is the good bit) I predicted this might happen (albeit, not this early) and planned ahead, by buying an elliptical trainer. Something recommended for low impact exercise and pelvis/hip/back/leg strengthening.

I think it’s helping.

And when your motivation to exercise is staying out of a wheelchair, it’s pretty hard to make excuses.