Hi
for anyone that may be discovering this blog for the first time, I was diagnosed with Relapsing Remitting MS in June 2008 and started my magical brain as a means to keep in step with things and let friends and acquaintances know how I'm getting on (cactus hands today, folks).
Anyway, if you don't know where to start, why not read my MS History?
Thanks to the MS Trust, by the way, for linking to me from their Facebook page. Reespec back atcha!
Showing posts with label magical brain. Show all posts
Showing posts with label magical brain. Show all posts
Thursday, 8 October 2009
Monday, 13 July 2009
How deep is remission?
Someone once said to me "MS is a companion, but not a friend."
These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.
The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.
The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.
Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.
You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.
Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.
This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.
I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.
The next move they make could be tomorrow or it could be in twenty years time.
Whenever it happens, I like to think that I will be ready psychologically.
These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.
The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.
The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.
Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.
You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.
Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.
This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.
I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.
The next move they make could be tomorrow or it could be in twenty years time.
Whenever it happens, I like to think that I will be ready psychologically.
Thursday, 4 June 2009
Yearly neurologist meeting - 2009
Yesterday, I saw my neurologist's registrar - Dr Somebodyorother plus one student.
I had to recap my entire MS history from Day 1 again. I always find it difficult to remember the relapses prior to diagnosis as I didn't recognise them for what they were at the time.
I did my usual set of tests. I had my reflexes tested, walk/limped from one line of old red tape stuck on the floor to another one and back while he timed me on his iphone, I walked an imaginary tightrope heel to toe, I read the eye chart, I resisted the pulling and pushing of my arms and legs, I had my eyes examined and I watched his finger move from left to right...
...my eyes were flickering...
"Do you want to come and have a look at this?" as he singled out my nystagmus to his student.
...and back again as his finger became two fingers as if he was making bunny ears behind an invisible head.
Back in the consultation room, my regular uber-neurologist breezed in with a student in tow. He flashed me a grin and told me how well I looked (see pet peeves part one) and leant against a bank of xray lightboxes with chin in hand as the registrar recounted his findings. At the mention of nystagmus, he lurched himself upright and held his biro vertically in front of my nose. I dutifully followed the pen, demonstrating my wonky eyes to the second student.
Excuse me while I digress - I have no idea if my nystagmus is a particularly textbook example or whether nystagmus cases are hard to find, but it is always singled out to the accompanying student. So if you are reading this blog and you are a neurology student (or otherwise), it will be quite easy for me to post a film of my oscillating eyes on this blog. If you would like me to do so leave a message in the comments and I will be happy to oblige.
He also noted my intranuclear opthalmoplegia, which his registrar had missed (my left eye moves a bit slower than my right).
Anyway, summarising the meeting:
- I have only had one minor relapse in the last year, so the medication (Rebif) is working and I can continue with it.
- An appointment is to be made at my local hospital, so they can try me with prismatic lensed spectacles that may correct my doublevision (no obligation to take them).
- I have regained my balance. Good old self-healing magical brain. Standing up straight with my eyes closed, I don't keel over and I can walk heel-to-toe across a room neither of which I could do a year ago.
- I need an extra blood test to see how my system is coping with the Beta Interferon
"You're doing very well" grinned my neurologist (cheerfully disregarding my mentioning pain and fatigue) before fielding a couple of my questions, shaking my hand and breezing out again.
So there you have it.
All being well, I won't see him for another year.
Wednesday, 20 May 2009
weirdness
been quite stable for ages - just the come and go of pain and fatigue.
Today, I feel a bit weird.
It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.
Hmmmm.....
Today, I feel a bit weird.
It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.
Hmmmm.....
Thursday, 12 February 2009
Psycho swat team
I caught something on TV the other night about someone who had a minor stroke while on holiday in the UK. As a result, he could no longer read when he woke up. He knew the individual letters on his hotel shampoo bottles, but couldn't string them together into words. Even though they were written in English, he was convinced they were written in a foreign language.
While this in itself is odd, the thing that struck me was that he informed his wife he couldn't read, She didn't believe him and he put it to one side mentally. He then just carried on as normal until later when he had to read something else and it all came back to him.
This reminds me of the time I first noticed my doublevision. I can't put an exact date on when it happened, other than it was March/April 2008 and I was at work when I noticed it. I found it odd and I tried to put it right by trying to un-cross my eyes. When I found that I couldn't, I just carried on doing what I was doing, double-checking it was still there every now and then. I think I thought "It'll go..." until a few days later when it obviously wasn't going to go. Nearly a year later it's still there.
I wonder if the magical brain somehow cushions the shock caused by the injury by despatching some sort of psychological swat team - convincing the mind that the doublevision or inability to read is a normal thing and to carry on as normal. And I wonder if the man with a stroke would have noticed his inability to read if he had been at home instead of on holiday. I wonder if he would have carried on as normal for days, avoiding books or newspapers before it started to bother him.
While this in itself is odd, the thing that struck me was that he informed his wife he couldn't read, She didn't believe him and he put it to one side mentally. He then just carried on as normal until later when he had to read something else and it all came back to him.
This reminds me of the time I first noticed my doublevision. I can't put an exact date on when it happened, other than it was March/April 2008 and I was at work when I noticed it. I found it odd and I tried to put it right by trying to un-cross my eyes. When I found that I couldn't, I just carried on doing what I was doing, double-checking it was still there every now and then. I think I thought "It'll go..." until a few days later when it obviously wasn't going to go. Nearly a year later it's still there.
I wonder if the magical brain somehow cushions the shock caused by the injury by despatching some sort of psychological swat team - convincing the mind that the doublevision or inability to read is a normal thing and to carry on as normal. And I wonder if the man with a stroke would have noticed his inability to read if he had been at home instead of on holiday. I wonder if he would have carried on as normal for days, avoiding books or newspapers before it started to bother him.
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