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We arrived at 8:30 and left at 10:30, although we spent an inordinate length of time waiting, waiting, waiting.
My sight is fine, but my eyes are not. The orthoptist (?)- Annie - said that my vision was 20/20 with just a bit of confusion between S and B. I should probably get my lens updated and have a largish pair of sunnies scripted too. Glare is not tolerated too well. The glare of a light shining in my eyes caused me to swear at the bloke. We were on first name basis by that stage.
There is a lot of expensive equipment in an eye surgeon's rooms. Annie measured my eyes and my glasses and then started to examine the tracking. That is when she went and got the surgeon, Brian. He did that thing with his finger and the lid of a blue biro - follow around the world, left, right, up down. Again and again. He did it so she could see the nystagmus. Then he went in with the microscope. Follow the yellow brick road again. And again. They looked in the eyepiece. Brian called Kirsten over to look in the eyepiece. I gather both extremities of my eye (they were looking into the left one, but I gather the right one is only worse) jigs around all over the place. This would explain why the end of a street looks like a mirage. This would explain why I cannot judge speed or distance when I am a pedestrian or a driver. It would also explain why I will never drive a car again. I had been trying to explain that I had to check things with my brain not with my eyes. Nothing is automatic any more.
Then he asked me to get up and walk over to Kirsten. I got to my feet and, as I have trained myself, paused for a second or two (but not three) to get control and to ease the ache from sitting that is in my groin. Brian asked me what I thought I was doing. I quipped/snapped that I was getting started! When I got over to Kirsten, he asked me to turn around and walk heel'n'toe back to him. Even looking at his face, I swayed all over the place and he caught me and stopped me after three steps. The same thing happened when he asked me to stand upright with both feet together. Simply cannot do it.
The problem lies within the brain stem. It is a wiring problem within the cerebellum. It is degenerative. I gather the neurologist will expand upon that next week.
Here are the symptoms: peripheral neuropathy, poor coordination and balance, eyesight difficulties, cramps in both legs but mainly the right leg, cramps in all segments of the arm, cramps under stress that envelope the left upper arm and chest wall that resemble angina (but are not angina because my heart is fine), cramps across the back of my shoulders, syncope caused by low blood pressure, vertigo.
That's enough to go on with.
11 comments:
Good gracious that sounds like a lot of baggage to put up with but you have such a great can-do attitude you seem to be making the necessary adjustments well. I just hope the eyesight thing stays at the edges do you can keep up your wonderful photos ... nice portrait.
All my best to you!
I tend to list to the pragmatic side. Do what you can/want with what you have. If you don't have it, then don't belly ache about it. I am in a really good situation overall when compared with 99% of people who live in this world.
The portrait was taken on a natural photography course that I went to one weekend this year by one of the other participants. We emailed all our shots to each other as it only seemed reasonable.
Listen.
I'm telling you something.
Stop being so chipper.
You have to allow yourself a little bit of time to feel sorry for yourself.
I know it makes it easier to travel through difficulty with pragmatism and a good dose of humour (it's my default setting too).
But sometimes we do it to the detriment of our emotions.
You gotta let them have a go too, or else they will creep up and bite you on the bum.
Okay?
Now...be miserable.
Okay?
Just for a little while.
Whinge a bit.
Be a sook.
If you don't want to burden your near and dear with your whingosity,
I'll listen.
Okay?
Okay.
*grin*
I kinda know where you and Vince have been and I know sorta know what you mean. However, I don't even have a diagnosis yet that alone a prognosis. I can read/research as good as the next person and I know that I tick a lot of boxes for various not so nice complaints. But I will hang out until next week.
As I said to the guy yesterday, I don't expect a cure. Hell, I don't even expect a plan of management. What I would like though is a name. Just a bit of closure.
It was amazing how much better I felt yesterday once I heard him say what he could see deep within my eyes. It confirmed that I was not making it all up. That I was not a hypochondriac. So, although it was not particularly good news, it confirmed that I am not dumb and can come to fairly reasonable conclusions based on evidence.
The emotional hit will come later if some sort of prognosis is forthcoming. Especially if it turns out to be hereditary.
Whoa! I hope they at least give it a name and I hope they can do a lot more than that for you. I agree with the others that its not good to bottle things up, it will only eat away from inside. I really wish you'd stop tagging these posts with "ageing, decay".
PS. Its a really beautiful portrait.
Oh Julie, I'm sorry to hear of the troubles. The way you remain unfazed by it all is simply amazing to me, and inspiring.
It's a fab portrait by the way.
The positive is you can see...the rest... not so positive. Good luck with it all.
If that was me I'd be totally miserable. I had a bout of vertigo for a while...not nice. I had to do weird exercises to get rid of it. It must be so frustrating not being given a diagnosis but then no diagnosis is better than a wrong one. Nice portrait too.
Yes, there is a form of vertigo where little bits of debris get loose in the inner ear and you have to jiggle your head/ear in a demented patter and over time they will right themselves again.
Aural pin-ball ...
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