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Today is World MS Day, so I thought I would do my bit to help raise awareness of this complex and often misunderstood condition.
I have had MS for nearly 20 years now, so it might sound strange for me to say that I had forgotten just how bad it can be…but boy, the last few months have reminded me!
It began in the mid-1990’s, when I was working as an OT in London. Fresh out of college, I was out for lunch with my colleagues, when I picked up my drink my hand started shaking as I tried to drink it (diet coke, nothing stronger!) Bit odd, I thought. Must be a trapped nerve. Another day, my left foot felt a bit numb, like I was wearing a sock when I wasn’t. Again I didn’t think much of it. I also started feeling really quite tired, but again put it down to long days and travelling to York every other weekend.
To cut a long story short, I saw a neurologist a few months later (the week before I got married!) who said it was ‘possible’ I had MS. Many more months of tests and hospital visits and that turned to ‘probable’ until I was finally diagnosed with relapsing remitting MS a couple of years later. It was actually a relief when I finally got a diagnosis, as a lot of the symptoms were sensory and I was beginning to think I was imagining it! The next few years I had periods of relapse, where new symptoms would appear followed by periods of remission when I would feel much better and symptoms would subside. However, after each relapse I didn’t quite get back to how I was before. It continued like that for about 4 years and then I had 3 back to back relapses in one year which left me so physically limited I had to stop work.
The following year was tough, but then I started some medication that slowed down the relapse rate and I started to get a bit stronger. The MS became more manageable. Yes, I walked with a stick by then and I had to pace myself in everything I did, but I found a way to cope. So I had a baby! Now, it is known that pregnancy hormones seem to ‘help’ MS and I got through the pregnancy relatively unscathed, but after giving birth there is often a ‘rebound’ effect and that combined with sleep deprivation meant I had a relapse a couple of months later. Motherhood was (and is!) a challenge, but it was the best thing I have ever done and that baby has grown into my lovely, funny, caring boy.
That was nearly 10 years ago. Since then, it’s been a pattern of relapses and remission, but generally the relapses have been further apart. The symptoms are still there though. Although I walk outside with a stick and use a mobility scooter now for longer distances, the most debilitating symptoms are often the ones invisible to others. There’s periods of numbness in nearly any part of my body, pins and needles for hours at a time, neuropathic pain, trickling feelings like there’s water running down my skin, crawling feelings like there’s ants crawling up my leg, dizziness, vertigo, balance problems not to mention the cognitive and memory problems. Vision problems too. I’ve had repeated bouts of optic neuritis as part of relapses, which has left me with sight problems and I’m now slightly colour blind (watching football teams in yellow play on a green pitch is tricky!)
Probably the most debilitating symptom is the fatigue. And by fatigue I don’t mean a bit tired. I mean a complete bone tired that comes on without warning. The best thing I can compare it to is jet-lag combined with when you’ve overdone it at the gym or been on a long run when you’re not used to it (from what I remember!) That complete physical and mental exhaustion that means I just can’t do anything. And with MS it comes without warning and not always conveniently in the evening when I’m at home, but maybe when i’m half way round a shop, or part way through a meal. I can be cooking tea and then not have the energy to eat it! It might last for 10 minutes or weeks, but no amount of positive thinking can get me out of it. Only rest will do. Which is frustrating! Especially when the sun is shining and I feel compelled to wash everything in the basket and hang it on the line!
So, this year, following a virus, I had the biggest relapse I’ve had for years, probably since I stopped work, and it was a shock! The vertigo, the pain, the numbness and the crippling fatigue. Getting out of bed was a chore. Going to the kitchen from the lounge was exhausting. I just felt so ill. I saw my neurologist and MS nurse, but they couldn’t offer me anything to help. I’ve just had to ride it out. A lot of rest and having to rely on the help of amazing family and fantastic friends. Nearly 5 months on, I’m improving…slowly. Not quite tap dancing yet (!) but I am thankful for any improvement.
So, that is an abridged version of my MS ‘journey’ so far. Why have I shared it? I’m not entirely sure. I guess on this World MS Day I’m trying to raise awareness of a disease that is relatively common, but many of the difficulties it causes can’t be seen. I don’t want sympathy, but if it brings a little bit of understanding then that’s great.
Welcome to my new blog!