After perking up significantly for a few weeks at the start of the summer, it would appear that Housten, we have a problem. Something happened this summer to cause new and interesting bits of me to wobble a bit more than before. It’s not like a sudden injury, more a gentle drift into being squishy. In fact it was enough weirdness (and associated pain) to make me rock up to my GP with photos of all the weird bendy crap that my body does and a written list of all the things that were bothering me. (10 minute appointments need to be efficient – she was suitably impressed that I’d written her notes for her!).
We knew previously that I have osteoarthritis in my lower back & hands. We knew already that my joints were hypermobile from the post op PT for my back. We also knew that I’ve spent the last 9 years on various levels of codeine and diazepam in order to function with various joint pains. We then combined this with the photos which gave me a 9 on the Beighton scale (bendy!) with blood pressure that goes top to bottom (this was previously put down to ‘white coat syndrome’), two pre-term births with early membrane rupture, my tissue paper scars and now the new and exciting fun of my knees giving way when they bend backwards and my hands hurting when I type. My GP looked at me and said, you already know this is EDS right? I’d pretty much figured it out yes, but thank you for at least expecting it to be a shock. So, off to the rheumatologist we go.
I’m not particularly bothered by the back pain or my SI popping out each day. This is what it does, it’s normal. I’d adjusted to it by using crutches when it was super wobbly, bribing Mr Geek to massage me with tennis balls each night and I had my drugs sorted to a level where I was a functioning person. But I’m having a real time getting my head around my knees and hands going. Last term, it was arthritis and I wore a brace on my thumb. I got my head around that because.. actually I don’t know why. But as I’m upping the time spent typing as I mark the summer work I set, my knuckles are sore. This bothers me.
Term starts again this week, and with it lots of standing. Arse.
Last term, I banished the paper folders and books from my life by fully embracing Google Drive (and making my kids do the same) so the only thing I need to haul around now is my laptop. Even our textbooks are online now. What this means for me is no heavy lifting aside from opening fire doors.
I need to be able to stand up without deep breathing. Testing out this theory at the weekend, I timed myself on how long I could stand in a queue without my knees and pelvis/hip screaming at me. It wasn’t a long queue – we went to Subway for lunch. We ordered, they started toasting our subs, and I started wobbling. I pointed at some salad and handed my purse over to Mr Geek to pay so I could sit down. Arse. That was less than 10 minutes.
I’m going to say it. I’m not ready to go downhill yet, so looking at mobility aids is just pissing me off. Or rather scaring me rigid. We’re looking at getting wheels so I can still go to Expos (last year I used crutches all the way around both conferences & it wasn’t fun). I keep picturing my classrooms and descend into utter panic as I realise that there is no way I can get up to my 400 year old classroom in wheels. Even the ramp from the lift is too steep for a self-propelled. The ‘we can’t accommodate you here’ conversation keeps echoing around my head. Mainly because I love my job. So… I looked for an alternative. I can’t wait for months while my referral sits in various in trays, I need to be up and ready next week in a classroom. In the end we settled on braces for my knees, which mean I won’t bend them backwards (which also force my pelvis into a decent position). I can stand up in them. I’m still using my muscles as all they do is prevent my knees from moving out of range. I can still go up stairs.
I have a vision of me looking like this:
So to my EDS I say, “Get away from her you bitch”.