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 nerves (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”.
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.