MRI results!

I finally got an MRI two weeks ago. It was done at the medical school attached to the hospital, because the MRI dept were having some technical difficulties with their machine. It meant that instead of having nice nurses talking me through it all and chattering away merrily, I had two PhD students who mostly talked to my partner about his Physics degree, and who spoke in such mumbled tones through the microphone that I couldn’t understand a word they were saying! (I honestly don’t know which one it was talking really, and considering one was male and one was female, and they were from different continents, that’s saying something!!)

It was pretty OK, other than the fact they didn’t offer me a blanket to keep warm, didn’t explain what was going on, and had to re-scan three times (I think) because I moved. I moved because when you put a person with an injury in a painful position, they tend to move! Especially if they have cramp-inducing conditions such as HMS! Bad patient relations. They didn’t even tell me their names. Have they not heard of #hellomynameis? Silly people! This is what happens when non-patient-relation people are put with patients without supervision. I get that they’re students, but if I didn’t know what it was going to be like, if I was claustrophobic, if I had no idea why the machine keeps making quite scary alarm noises – then I’d have been terrified! They didn’t ask me at all if I was scared, and they knew it was my first time in an MRI machine. I wasn’t that impressed all told. The problem is, I can’t very well write to the PALS service because these guys aren’t hospital employees, and aren’t covered by it.

I got the results back on Tuesday. My GP said “We have a positive result.” Which I took to mean there was something there on the scan. She meant positive, like “good”. All my tendons are fine, no fractures, no cartilage damage, no membrane damage. Apparently there’s a small effusion (liquid pool) in my knee, but that’s totally normal and shows up on anyone. I did point out that the day they scanned, I hadn’t moved a lot in order to minimise discomfort in the scanner, so it didn’t hurt a lot that day anyway. So the verdict is… there’s nothing really wrong with my knee. (Or if there is something wrong, it’s soft tissue).

That’s not as comforting as it should be. It means I’m being sent back to physio *again* only this time, it’s with a new physio. One I will probably have to teach about HMS because they won’t have heard of it… even though I alerted the triage person to it when I called up for the referral. I’d rather there was something actually wrong almost, because then I would feel vindicated in the fact I have been totally unable to do pretty much anything for the past two months. I’ve been relying on the crutches so much I have bruises on my palms, damage to my back and shoulders and a fairly manky looking scab on my knuckle. Sometimes having a rare condition is an absolute pain in the ass. I get so tired of constantly having to explain it’s not like arthritis, it’s not “just being bendy” and it’s definitely not me faking it. I hope and pray that this physio magically turns out to be one of those awesome NHS employees that hide away in corners, diligently doing their job very well and hiding from all the ridiculous bureaucracy. If she’s like my first physio who did friction massages on  the tendons inside my shoulder. Yep, he popped my shoulder partially out of it’s socket, and rubbed the internal tendons with his thumb. It’s one of the most painful things I’d ever experienced, up until this knee injury.

I suppose I should be glad that my knee is fixable. I’m not going to be stuck this way forever. But then I was told there was a 6 week wait for physiotherapy, which made me want to just sit on the floor and cry. I was going to be left for 6 more weeks sat in this state, in pain and not really knowing why?! I was angry, frustrated and tired. And worse than all that, I knew that the injury was all my fault in the first place. I knew the weather was bad, I heard the lightning when I was leaving, and I didn’t turn back.

Thankfully, someone in the heavens seems to like me, and the physio called me up to “fill up her calendar”. My first appointment is tomorrow afternoon. She’d better not break me, else I’ll make her carry me home.

I’ve got a whole bunch of stuff to do in the morning, including picking up £25 of shopping centre vouchers I won off the City Council for completing a survey about my opinions on additional licensing for Houses of Multiple Occupancy. (Should landlords who buy up cheap houses and convert them into student lettings pay a premium rate of council tax, basically.) If I get a job, that money might get spent on fun things. If not, then it’ll get spent on food. If I do a lot, then my leg will hurt and she’ll see what the damage is! That’s my plan anyway. I’m not going to do anything excessive, just a small half hour walk to the train station. I’ll bus it back like a good disabled girl! I’ll even use my crutches to minimise the damage!

The house move was a success too. We’re almost completely unpacked. My partner, bless him, moved nearly everything by hand, with the aid of an awesome friend of ours.

Oh, and I modelled for a trainee hairdresser and now have a (and I quote) “Sexy swinging A-line bob”. I shall try to put up some photos later.

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Do you consider yourself to be disabled?

A woman asked me an interesting question the other day. She asked me whether I consider myself to be disabled.

The thing is being “disabled” is often misunderstood, people assume that being disabled and you can’t do anything. In reality being disabled means that you need reasonable adjustment in order to be observed lead a normal life. I definitely fall into this category, I sprain my thumbs on a regular basis which means that I have to be very careful when doing a lot of normal everyday things. The last injury I got was from trying to open some packaging, it with that annoying plastic crimped edge packaging that you get kids toys in at Christmas. I very carefully cut all of the crimped edges off and yet I still managed to pull a tendon in my shoulder and sprain my thumb.

I do quite often get funny looks from people when I mentioned my joint condition because I cover it quite well. It’s not visible anyway but I don’t talk about how much pain I’m in and I don’t talk about how exhausted I become. I think the problem and lies in the public perception of disability often means that you have to be completely incapable to register on the disability spectrum.

I don’t regard myself as disabled really because I can do almost everything, however I do declare my joint condition as a disability on job applications. I think this is a very important thing for me to do because even though employers are not allowed to discriminate against me because of my joints, if I went into a job without them knowing about my joints and then I became injured, I could not really expect them to understand.

I suppose it depends on how many adjustments you have to make in order to live a reasonable life, so I thought I’d list a few:

  • I decant my shampoo and conditioner into pump bottles because I can’t squeeze normal shampoo bottles.
  • I wear wrist supports and thumb supports to reduce the chance of sprains.
  • I hold spatulas and cooking implements differently to use the pressure in my wrists.
  • I used dictation software and type wherever possible to avoid my overly tight pen grip dislocating my thumb.
  • I use a tens machine, hot water bottles, hot showers, massages and over-the-counter painkillers to relieve my pain.
  • I have to use a suitcase to carry groceries back from my local store because I can’t carry them in normal carrier bags. I admit I am a little too vain to use a grocery trolley.
  • I wear orthotic inserts in my shoes to reduce the incidence of sprains and only where sensible footwear (within reason… I do occasionally wear kitten heels to feel pretty). I pretty much live in my trainers.
  • I can’t walk for long periods of time because my back can go into spasm and the tighter my back becomes the harder it becomes breathe, as the tense muscles pulled down on my rib cage.
  • I also can’t lift heavy things or things from high above my head and so have to use stepladders and reduce the weight of things I’m carrying by splitting them into smaller loads.

Now I don’t know if this makes me “disabled enough”. I’ve asked for advice about this and hypermobility syndrome is not classified on its own as a disability, as far as I can tell. It is often referred to as a manageable condition, but even the best managing of us bendy folks will have a flare up every now and then.

I think the trick lies in talking about my condition to as many people as I can. It’s not just being bendy, the exhaustion and anxiety and pain they go along with it make HMS a very difficult condition to live with. Being constantly told that I am “fine” or considered able-bodied when on days I can’t reach the floor to do my own shoes is not right. It’s not like I’m asking for disability benefit or huge amounts of funding, just a little consideration.  This does result in some people assuming that all I talk about my condition, which is absolutely not the case. At the moment I remind myself a bit of Adam Hills on “The Last Leg” during the Paralympics where he was getting all excited about little things that he could now talk to people other people with prosthetics about. I met some bendy people and the first question I asked them was if their fingernails are bendy and soft, and if they break easily. This question restrict see with a chorus of “Yes! Absolutely!” And I got a good few nail hardeners is recommended to me, with one person even resorting to false nails. It’s quite exciting to not feel lonely anymore.

So back to the original question I suppose: Am I disabled or am I not?

I would consider myself to be disabled in as much as I have to really think about the way I live my life to prevent myself from being injured. If I didn’t go through hours of physio then my condition would degenerate so quickly that I would probably need significant assistance in my everyday life.

Just because I am good at doing physio and I take care of myself doesn’t mean I’m magically cured, and I still need a small amount of help and a bit of understanding.

I promised that this blog wouldn’t be a whinge-filled irritation, so I promise my next few posts will involve more fun things, but it’s been quite cathartic to finally get this off my chest!