Tales of a Mobile Disaster Area

God, I want new ribs.

I wish I had a solid clue about whether medical people believed me when I tell them that it's not pain stopping my leg straightening, it just Won't Do The Thing. Like, I fell over and accidentally hit a reroll on the maximum extension/flexion of the thing. I know the muscles have weakened over time because I can't walk anywhere near as far as I used to be able to but still, that shouldn't have affected it immediately after the fall.

It's just frustrating that there seems to be no curiosity at all as to why there's been no change at all in the year and a half since I fell. About why my knee now only has about 70% of the range of movement it used to.

Especially since I could be doing all this physio for no improvement in the range because the underlying issue is still unknown. Or it could improve, who the fuck knows? Not me.

Saw Mr Ashraf at the Royal Orthopaedic today.

So. So. The consultant was *deeply* unimpressed with my situation. Also, dudley sent the scans from my hospital stay but no corresponding notes, not from that stay, not from my knee surgery which, I dunno, might be relevant? So good thing I brought those medical notes.
Basically, the kneecap is still out, which we knew, and because it's been like that for so long my hamstrings have shortened to try and compensate for how I have to walk/stand because the thing won't straighten, which is now also a big problem. I should have been having physio this entire time.

His face when I said I hadn't had any. Also his face after his question of 'so what did they do in the 2 weeks you were in hospital'. Nothing. Well, that one session on the bendy leg machine and them trying to get me to walk on a dislocated kneecap and sit in the pain chair. And giving me meds I was allergic to.

There's a *chance* something can be done - surgery to put the knee back and plastic to put in to hold it in place, but that depends on how the knee has degraded in the months since the accident. There's also the problem that because of the weird position the kneecap has been in it's also likely worn away at the cartilage in the joint which means that even if the surgery is a success there'll be more pain in there afterwards. If he can't do the surgery then I'm fucked basically. Whee. He, he did not seem enthused about the success of such a surgery.

Also! Turns out that the initial surgery they told me they were doing in 2006? Not what they actually did.

I'm going for another mri to see how things have changed in the 10 months since my fall. I'm gonna ask for my medical notes after I see him next. I'm also going to ask if anything could/should have been done while I was actually still in hospital immediately post-fall. If the answer is yes, I'm seeking legal advice.

It may be shocking to hear, but I doubt either of us enjoy being yelled at for things that we cannot help. We are not doing this on purpose. You should know this. It is a well known thing that occurs with folks with this condition and you have known us for years. Oh no, we're talking over each other a bit, what horrors.
'Have I ruined it?' Yes, yes you did and for once I pushed passed my conflict avoidance and told you because I'm getting truly fed up of how you treat folks with neurodivergance. Or tbh with disabilities in general. People have behaviours that annoy me, you included, and I don't give them grief for it because I know they're not doing it on purpose. Ffs, I'd never stop yelling at people who ate while on call then because it sets my misophonia off like nothing else.
Just, this is so far from the first time you have done this, raised your voice at us over something petty that, just, fuck you sometimes. Especially. Especially when I know for a fact I've told you about how it's something I had to put up with so often growing up that it triggers me now. Fine, I understand it's annoying. There are vtter ways of dealing with things that are irritating than yelling at your partner/friends.

God, reading through my medical records leaves me with such a bad taste in my mouth.
The lack of communication, both with each other and with me.
The misinformation in there (I'm no medical professional but I'm pretty sure an ankle and a knee are different things and that there is a significant difference between where a right and left knee are).
The complete disarray in which they are kept. You couldn't make the organisation worse if you threw them up in the air and put them back randomly. I hope that is just the records team scanning them wierd though.

How MULTIPLE TIMES I've been offficially diagnosed with something that would necessitate treatment but then just never told or followed up on.

ARRRRGH

Despite the universe's best efforts, I somehow survived 2023.

It's just been a review of all my stupid body's greatest hits with a big collaberation at the end to keep things fresh. Started off with my back going again and never really letting up. Although it was definitely beat by the stupid fucking knee going again. Same way, kneecap dislocating then me falling on it. Somehow received *less* treatment for it despite actually knowing about the hypermobility and the still displaced kneecap this time around. Who knows maybe I will get to see a consultant about it before fucking June. But the knee won't straighten or bend properly so walking more than a few steps make it feel like somebody is tearing out the muscles around my kidneys with their bare hands. 0/10. Do not recommend.

I got some fun beading patterns figured out though. Very proud of my Lunatender from FFXIV I made for our anniversary. Also the chickens I figured out for Christmas.

Will be staying bye to the in-laws in a coiple of hours as they came to visit for Christmas. It was so nice having company, it's been increibly lonely these past few months. I'm happy for the wife being able to go do their degree but I do sometimes wish they'd deferred a year until I would hopefully be more mobile again. Not something I could have asked for though.

Still not moving afterwards though. These past few months have proven that self-reliance is unfortunately necessary. I've spent far too much time festering and angry because not only was no help there when I needed it but I dunno, just a lot of incredible thoughtlessness. We'll see how it goes. Probably with me tripping over something left out and ending up back in hospital. Bleh.

Please excuse the spam. The hospital wifi didn't like livejournal for whatever reason so I haven't had a chance to post my drafts until now.

The amount of times I have said "I'm allergic to alcohol" over the last week I cannot count on both hands. Guess what I was given last night.

So, aside from the fact the medication was given 5 hours late, somehow events conspired thusly...

First, despite replying alcohol to the question of allergies literally every time I have been asked no-one actually put it in my notes. Then I was prescribed Oramorph, a liquid morphine medication you take orally, which has a main component of ethanol. However! It doesn't matter if my allergy was in my notes or not becaiae the nurse didn't check the ingredients before giving it to me.

I, too trusting, of course took the thing. Cue immediate regret. It feels like I swallowd acid and I feel the heat rising as my skin starts to feel like I've been severely sunburned all over. I recognise this sensation from the dumb time I bought the wrong cough syrup. Check the ingredient list for the medication online anyway. 8% ethanol. Fuck. Call the nurse. Tell her I'm having an allergic reaction to the alcohol in the medication which is q problem. Immediate doubt. Then goes toncheck the ingredient list herself. Comes back. "It's only a small amount."

This line continues even after the on call doctor comes because of course all antihistamines have to be prescribed. "It's only a very small amount of alcohol" I want them to say "it's only 8% peanuts" to someone and see how that goes. Sir, please let me be doubtful of someone who, when finding out their patient is having a supposed allergic reaction, asks about the fucking physio they had that day first.

"Oh it'll pass in about 30 minutes maximum." He says, likely thinking it's just a normal alcohol sensitivity and I'm exaggerating. 5 1/2 hours later. 5 1/2 hours of my skin on fire, every part of me with nerve damage burning. Of the morphine not fucking working anyway.

And all I got was doubt and learning not a single person listended to me when I told them so many times about the allergy and excuses of "I didn't thunk to check the ingredients" or "alcohol isn't a common ingredient in medicines" (as if alcohol wipes and gels aren't standard use) or FUCKING "It's only 8%"

Now I get to try and trust these people with treating the actual cocking reason I'm in hospital.

I should go find my old post about my grand adventure which ended in the helicopter rescue. Done it all again. Slipped in the kitchen, kneecap came out then I fell on it as it was out. Pretty sure that, 2 days later, it's still out as the knee won't bend or straighten. Not like pain's stopping me, although it does hurt of course, but like there's something physical in the way blocking the movement.

So I'm in the hospital again. At least there's wifi this time. Very thankful the ambulance didn't take the full 3 hours minimum to arrive. The hour and a half on the floor was bad enough.

Trying so hard to impress upon the doctors here of my history and my hypermobility. It may look on the xray that everything is in place but things are very mych not working inside that joint. Will be havung a ct scan in 2 hours which is fun. I haven't had ine of those in a while.

I have been here 2 weeks now. Only today did I get the consultant to admit that, yes, he probably had been comparing scans of my current injury to those taken BEFORE I had the knee operation. I.e. when it was also displaced. So, sirs, no, my wonky patella is not normal.

Honestly expected being told 'there's nothing I can do, there's nothing anyone in this hospital can do' to hurt a lot more. Still find being asked 'so what treatment do you want?' to be the most annoying thing on the planet. Oh, I dunno? Maybe less pain? Maybe a functional leg? Being referred to The Knee Guy though. Fuck knows how long that will take.

Don't get any help at home. Or at least not yet. Existing between bed and commode is a perfectly cromulent manner of living apparantly. What will happen in a month when I'm on my own is Not Their Concern.

None of that is why I hate though. Nope. So I was *supposed* to leave hospital today. Supposed to. The equipment was delivered (just, the guys don't know how to knock) my medication was prepared (none because I'll be taking exactly what I came in with) and the ambulance called. I'd be wheeled to my door, I'd use the full extent of my impressive mobility to stand on one leg and spin 180 degrees the sit on the commode to be wheeled to my bed where I would live forever more.

So I saw home.

The coomode has no wheels and doesn't fit through the door properly anywqy. Nor is there ròm to pass a wheelchair arou d me as I stand, nor can the wheelchair fit through the doors anyway. Ambulance drivers call it an unsafe discharge and now I'm back in hospital. Occupational therapy have to do a home visit which, even if they do tomorrow, means that I won't get home until Monday at the earliest. As the stupid non-knocking or calling delivery company don't work weekends.

Also hilariously, I didn't realise until I was back in the ward... they didn't give me any anti-dvt meds. They knew I was going to be non-mobile for the forseeable future and didn't give me anything to stop blood clots.