“My” Multiple Sclerosis journey

I’ve been trying to get going with my blog again (blame the Olympics for the gap) and, when I started I realized I’ve never written about ‘my’ multiple sclerosis journey and thought I ought to put that right! MS comes in different shapes and forms, but this is how mine has been!

It first started when I was lying on the floor watching television. I used to do that a lot! Suddenly instead of seeing the television everything changed. It was like looking through a kaleidoscope. Nothing was right. The TV picture and the room were fragmented up into bright coloured segments that moved about. This lasted for a few minutes and after that my sight returned to normal. In my usual way I thought, “That was weird”, but I didn’t do anything about it.

Then, sometime later, it happened again.

Now I was a bit concerned so I went to the doctor’s, but as there didn’t seem to be anything else wrong with me and my sight was back to normal she decided it was probably migraine without the headache and I was quite happy with that.

You will find that this story may seem a bit jumbled up and I can’t tell you when these things happened because, if I don’t like something, I tend to ignore it in the hope it will go away. This usually works quite well! There is a diary somewhere that has everything recorded and when it happened but I can’t find it!

Anyway sometime after this I was in a staff meeting after school. I remember it had been quite difficult and that I felt rough and was feeling stressed.

That was followed by a new intake evening. That’s where parents who were thinking of choosing our school for their 11 year olds were coming to look round. I was feeling worse and worse, but I put it down to having had a long and stressful day.

As I was taking them down to the lower school building though things began to change. I couldn’t walk in a straight line and I kept crashing into the wall. It was just like being very drunk, but I hadn’t touched a drop.

What was really worrying was that Ray, my partner, had had a brain haemorrhage and my symptoms reminded me of that.

Somehow we got through the rest of the evening with me laughing and joking with the parents, but I don’t know how many sent their kids to our school!

The next morning I went to the doctor again. I can’t remember exactly what happened and in what order but he told me to stop smoking immediately (I did, for a week!) He got me to wait outside his office while he made some calls which resulted in my referral to the National Hospital for Neurology and Neurosurgery.

I’ll summarise the next bits! 

I went to the hospital but, by then, everything was a lot better although I had some weakness on my left side. I’ve just remembered that Ray was so worried that he came with me. That shows how frightened we were. 

Some time after that a new, scarier, thing happened.

I woke up one day and my eyes decided that they were not going to talk to me and they were not going to talk to each other. They were just going to wander around in my head doing exactly what they wanted, completely independently. This was scary!!!!

In my usual ‘ignore it’ mode, I decided I had too much to do and that I had to go to work so I rang my friend Stuart and asked him to pick me up.

He was a bit shocked when he saw me and the journey into school wasn’t easy because I was seeing some really strange things. The road wasn’t going where the road was supposed to go and when I watched two cars drive right through each other and come out the other side (with me making appropriate sound effects) Stuart told me to shut my eyes!

We got to school and I started doing the cover (working out who’d take the classes for teachers who were too ill to come in!).

I then decided I had to deliver something and managed to walk upstairs by holding onto the walls but it was when I saw the kids’ faces as they looked at me that I realised something was seriously wrong and eventually I agreed to going home.

Back to the doctor then back to the hospital where I was admitted for a week of tests.

By that point I had researched all this and decided that I had got multiple sclerosis and I told the doctor that at the beginning of the week.

I went through a barrage of tests including MRI scans, lumbar puncture (they don’t hurt like people say they do!), evoke potential or something like that with electrodes glued to your scalp, and loads of other bits.

At the end of the week the doctor came to see me and asked if I wanted to know what was wrong. He said it was multiple sclerosis. When I laughed and said that’s what I’d said he asked me how I knew and I told him that I’m not a person who panics easily, that I’d researched everything on the Internet and decided it was basically either that or a brain tumour and I didn’t fancy a brain tumour!

 So the journey with relapse and remitting MS continued.

The worst thing with it is the unpredictability.  You can be absolutely fine one-minute and things can be disastrously wrong the next. There is no logic to it, you go to bed all right you wake up and part of you isn’t doing what it should. This is very stressful and whenever I felt ill in any way I’d start to worry about what was going to happen next.

I was coping with it though. There were times when I’d wake up and literally fall out of bed because one side had decided not to work. There were more occurrences of the eyes playing up. There were very annoying periods of tingling and numbness in my fingers where I’d literally hit things to try and make it stop.

But there were also long periods of relative normality.

But then it moved on again. I became increasingly tired and started to have more and more problems the left side of my body. I was having trouble walking, my balance was terrible, and I had to use a walking stick and even got a ‘blue badge’.

My school were incredibly supportive, allowing me to work from home for part of each week.

The kids were amazing too, even when I was holding on to them whilst telling them off about stuff and screaming ‘And do not move because if you do I’ll fall over’. They never did!

Eventually it became clear that I really could not cope.  I wasn’t prepared to go long-term sick (even though that would have been better for me financially) because I did not feel it was fair on the staff or the kids so I asked for early retirement on medical grounds.

Initially I didn’t get it because I didn’t have a history of being off sick!  But after a flurry of letters that decision was changed and off I went.

I suppose the first year was mainly spent sleeping and trying to get my head round the situation I was in. But then I decided I got to do something about it, I’d fought the illness every stage of the way and now was time to start again. My paternal grandmother had had MS and my memories were of her in a wheelchair, I was going to do my best to not let that happen to me!

That’s when this journey began. I lost some of the weight on my own but the real break through for me was starting to train with Darryl. He has the same positive mental attitude as me, he really understood what was wrong and taught me how to use and trust my body.

Over time my hospital appointments changed to annual check ups.

I had my most recent one just before the Olympics, I’ll tell you how it went in my next blog!

6 responses to ““My” Multiple Sclerosis journey”

  1. Good to read your journey, some of it I know from living in the close but its very interesting to read & probably theraputic for you to write. The change in your life over the last few years is immense & this is down to your strength & determination of character, keep fighting. xx

    • It’s weird for me to write! Darryl’s just said how I’m a different person now, and he’s right, I am ….. I can still talk a lot though!!!! xxx

  2. Amazing, inspirational story Gill. One of my best friends has MS as well and like you she has not given into the disease.
    I admire you greatly …Ali

  3. Reading about your MS has just made me even more aware of why I have always felt such great admiration for you – thanks for sharing xxx

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