I have had some good news today.
Well, not exactly good news but I'm pleased nonetheless.
I was referred for an M.R.I. on my ankle last time I saw my haemophilia specialist. This may sound extreme but other than a cursory play with my foot whenever I saw him, and sometimes not even that, I had begun to feel that my ankle was not getting the attention it deserved.
As a bleeder with a tendancy for joint bleeds, I felt that a wiggle of the joint and an "Oh that doesn't feel too bad - you've got a pretty good range of movement in that joint" wasn't quite good enough.
I am lucky enough to only have one really problematic joint but my scrawny little ankle clicks, grinds and hurts in such a way it would make a torturer proud. It has kept me awake on numerous occasions, such that if I'd had a hacksaw under my pillow I'd have been inclined to hack off my own foot - seriously, I would've, had it not been for the likelihood of a monster haemorrhage of course. It often 'disappears'. Surely, you query, that's the effect I was after? Nope. When my ankle 'disappears' as I describe it, it becomes in an instant so weak it can no longer support me, it suddenly hurts like someone has shot a bullet right through it, and I fall over - if I don't catch myself first. Oh, and I usually shriek. And I'm not prone to that.
Yup, doc, it's not too bad.
According to the new GIGTB leaflet produced by the Haemophilia society, the content of which I believe has been taken from the national service spec for haemophilia care (please do correct me if I've got that wrong), as a severe bleeder:
"You should also be offered an assessment
by a specialist orthopaedic surgeon or
rheumatologist at least once a year to
monitor joint and muscle problems and
identify the need for surgical intervention."
This is not a service I have ever had whilst under any comprehensive care centre. And I'm 36 you know.
Maybe it's just an ideal rather than a reality - I note the use of the word "should". Maybe I just didn't complain enough about the pain I was in. I believe that most bleeders (yes, men and women) have very high pain thresholds, otherwise we'd be in pieces all the time and you'd never hear the end of it. I also am not the kind of person who complains - at least I don't think I am. I will generally only bring something up if it is a real problem but if I'm then told - oh no, this seems fine, I have a tendency to put up and shut up. Perhaps I should've pushed for further investigation earlier but to be fair I trusted the doctor -haha, hahahahaa, god you think I'd have learned by now - and was unaware what care should have been available to me. We've never had a physio attached to our Comprehensive Care Centre and I've never seen the national service specification or the NICE guidelines.
Anyhow, during my last visit my haemophilia specialist said, as he held my right ankle in his hand,
"Have you had an M.R.I. done on it recently?"
One jaw bleed later, I said,
"...um, I've never had one".
And so I was referred.
To Selly Oak I went for a half hour session in a tubular machine that was either having the time of its life or heading for a severe mechanical breakdown. I quite enjoyed it. It was kind of musical, in a tone deaf tuneless kind of way. My favourite part was when the operator popped some headphones over my ears and said - "That's for the music". They remained silent until she said through them, 30 minutes later,
"All done."
Two weeks later I've just phoned the hospital to see if they've got the results, and yes, they're in....
*Lights dimmed*
*Drum roll*
*Gratuitous lengthy relentless seemingly unending dramatic paaaaaaauuuuuse*
"Congratulations Mrs Cooper, you have won severe arthropathy of the right side of your ankle joint!!"
Have to admit my nurse didn't quite put it like that, but the good news was no tendon damage and the left side of my ankle didn't look too bad.
The fact that the right side is so damaged makes me feel better - is that weird?? It basically means that all this pain and discomfort and weakness and crunching is not all in my head. Why I would think it was, god knows, but hey it ain't, so that's good. It explains things for me and means that finally summat can be done to make it better - or at least perhaps a tad less impactive on my life.
I await the next step, with one good and one validated weak ankle ...
