Wobbly Eyes and Ear Crystals (by sarah)
Yesterday I turned up for a physio appointment - I wasn't sure what it was for but thought it might be for my eyes which seemed weird but turned out to be right - of course reception were confused because I said physio and tried to direct me to the physio department - turns out it's under neurology and then they couldn't find my name and then found (once hyphen was sorted out) and then they asked me questions about number which I couldn't answer and felt stupid. I can say my birthday because I know the sounds but they pulled the numbers out and not the months name and I couldn't process it 🙁
To be fair I was pretty tired and struggling slightly when we arrived as I'd had to do double admin that morning. Then it was asking for house number which I also failed at though I do know my address honest! And then they asked me if I was the mobile ending in .... now I could have recited the whole number because I've worked at that and have a story that builds the numbers but I couldn't fathom weather my phone number had those numbers in at all!
So Al had to answer for me and I was already upset because it was his birthday and we were at the hospital and it was his birthday and I know I'd gotten him a card and present but I couldn't remember where they were or even exactly what they were! And he'd missed the coach for the kids school trip due to stupid traffic and so had been really upset that he'd caused the kids to miss their trip (he drove them to the first place they were supposed to be going to and met up with the school!).
But the appointment was more than fine though I seem to spend my time after appointments there leant up against walls trying not to fall down.
This was the FB update I made on my return:
And at today's hospital visit we discovered that just flicking my eyes from side to side can make me sweat and feel like I'm going to hurl! I have a pronounced eye wobble at the corners (it had a name I can't remember) so they are going with gaze instability and I have exercises to do which will make me feel sick and there is a slight possibility of a crystal dislodged in my ear - seriously - who knew we had ear crystals?
Couldn't do all the tests because oh my god dizzy-vertigo-pain! But on the plus side this is fixable! Just going to take a while. And also this is all kind of normal head bang stuff which is a relief!
The physio asked lots of questions which kind of hit the nail on the head - near misses whilst crossing the road, struggling with supermarkets, crashing into people in crowds, motion sickness in cars and whilst trying to watch films and play computer games, being uncoordinated ie the landscape is not quiet where I expect it to be.
Part of the issue is that though I can tell this is different from my chronic labrynthitis I didn't really register it as proper dizziness and feeling sick because that has been how things are a lot of the time anyway (inflamed middle ear that crops up as a side effect of the glandular fever I had in my first year at uni).
So they think it is mostly gaze instability - I assume that is to do with knocking my optics out initially in the fall? My eyes can't track thing properly and as creatures that rely on hunting this upsets our brains and mine is desperately trying to compensate which makes me really tired when I come a cross lots of information/visual stimuli. That's why reading makes me feel like I am falling, why the travelators make wobble, why railings drain my ability to walk. And worse it means you are likely not to notice things... like the damn van that all most splatted me the other day - how I could have missed it in it's enourmousness I don't know - but I did.
There is a chance of a loose crystal in my ear but they think it unlikely but we couldn't do my balance stuff because I was feeling sick (plus it hurt - I know weird! Moving your eyes shouldn't hurt).
On the grrr side it is going to take weeks/months to sort the eyes and the same then for the ears if it turns out not to all be visual. The exercises make me feel ill, they will lit take a minute a day.
On the good side - hey!!! This is fixable, treatable, sortable and no operations or drugs are involved!!! WHOOO Who!
No seriously that is amazing!
We are taking the treatment one thing at a time as I still need to be able to function as a person and if we are not careful I could end up at the hospital all the time (I HATE hospitals - really would rather not be anywhere near them - don't get me wrong I also love them for repeatedly saving my life but I do associate them with pain and loss).
Also last week I had another nurology appointment - this was the result of that (as posted on FB):
Apollogies for not letting people know how the appointment went - I was a tad tired! Basically there is a huge and positive improvement but still no end time - so still on rests etc... On the plus side most of the fatigue/brain drain appears to be part of an eye issue ie my eyes aren't focusing on things properly and there is stuff they can do about this 🙂 Physio is go a new set of treaments will begin soon, have to go back and have seizure etc... stuff looked at again even though I've not had one for a while ie since really getting to grips with the resting stuff. So tired still today that I had to be helped using the self check out, couldn't work out my money for the bus and tripped over my own feet. Also Cheltenham Costas failed at having GF savoury and I had to have cake for lunch :/
So it is all good which is why I am uber frustrated at not moving forward more quickly but I am trying to be ok with it all. Also the thing of the only things I can eat safely being cake when out is an issue as I've buggered up my sugar levels and need to sort that out too as that wont be helping ANYTHING.
Conclusion: things are improving, things have already improved pretty damn drastically but there is still a long slow path ahead and it is like picking up pieces of myself that I did not know were lost.
Wed 5th Apr 2017 8:34 am 
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