A Cracking Evening

There are few things as satisfying as laying down twisted on my bed, grabbing my hip and pulling my SI joint back into line with a noise in the hollow place between a crack and a thud. It’s a noise that is audible across the room and can be felt through the mattress by my poor long suffering Geek. It’s swiftly followed by tingling down both legs as the nerves adjust to this more natural spinal alignment, and for a while the Burning acid in my pelvis dulls. CRPS is under control, bit not always.

I’ve perfected this stretch from daily yanking my joints about. I know the relief that it brings, but I also know the claustrophobic pain that ensues when it doesn’t go back in.

Today was an insanely long day, and my plan was to come home and going straight to bed. However, instead of sleeping it off, painsomnia has kicked in. Rule one of painsomnia is to stretch And let everything crack out. Sometimes just relieving the pressure helps, but tonight, despite soundinhb like a bowl of rice crispies hasn’t helped. I’m out of options for more painkillers and am onto the “suck it up princess” method of coping. I’m clearly still shit at pacing.

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I spent too long in my chair today, so my back is sore.*
I didn’t check my posture often enough and ended up leaning on the arm rest, so my shoulder is visibly out.
I ignored the pain and literally gritted my teeth, so my jaw hurts and is creating a TMJ headache.

I’m tired, so the palpitations are more pronounced. All I want to do is drift off and wake up without something trying to drop off.

I’m tired & frustrated. I’ve also worked nearly 24 hours so far this week (not including stuff I bring home) and its only Tuesday!

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*”sore” translates to still causing yelping pain after dihydracodeine, gabapentin, and a shot of morphine.

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Adventures With Roboleg Part 2 – Roboleg is back & this time he has company

It’s been a week since my kneecap decided to fall off because I turned around. That’s a week in a straight splint. A week of me openly swearing at my inability to bend my leg. A week of having a battering ram at the front of my wheelchair. A week of using crutches where possible, but trying to keep the weight off of the left knee whilst simultaneously making sure roboleg prevents the right knee from giving way and my SI slipping. I think we can agree that I failed on all counts there, but I’ve kept my legs moving and I haven’t completely lost my temper, so not a total fail.

I have a lot riding on this appointment (probably more mentally than anything) – mainly the decision to ditch the splint so I can return to some kind of normality (and work as I can’t get the chair + leg riser around my classroom).

What I’m hoping for is:
– removal of the “bloody splint”
– replacement with hinged brace (to prevent more bending backwards / rotating)
– no care free manipulation of joints
– not being fobbed off with tubigrip

Running nearly 90 minutes behind schedule was doing very little for my nervesĀ  (or those of my poor dad who was looking after the munchkins).

What happened was:

Initial recoil when I mentioned EDS (at least she knew what I meant) & comments on how over extended my knees are. Well yes…  To give her credit, she was very cautious when manipulating my knee.

– “bloody splint” was removed + ceremonial placing of it in the bin! (Apparently the NHS do not recycle)

– leg is now supportless and wobbling free.

– warning was duly given to me that the joint is so wobbly that it’s inevitable that it’ll happen again. (Joy)

– Having another hinged brace is up to occupational health as it can cause muscle wastage. Referral will be made, but there’s an 18 week waiting list (or I need to buy one privately )

– made a referral to the Physio team who didn’t want to see me before because EDS was too complex. Could be interesting. Will take at least 3 weeks to get in contact for an appointment, unless I dislocate again, because then the clock resets and a new referral needs to be made.

…and then…. are you ready? … are you sure?… hold onto your pelvic floor…

The Dr says “Walk on it as much as possible” to the woman sat in a wheelchair.

Yes, I laughed (because tbh, we’re at that point). Dr looked at me & said “Ah yes. Good point”.

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So second roboleg is winging it’s way from Amazon as I have no intention of pushing my kneecap back into place again unless it’s totally necessary thank you very much.