(This is sort of a public service announcement as I get lots of visitors who come here from a search for “multiple sclerosis”.)
I’m a bit grumpy today, not just because I’m in bed with a temperature of 38.7, sweating and occasionally coughing so hard I eject alarmingly yellow blobs of what is presumably some gelatinous form of plutonium, but because I should be at the airport flying to Oslo (where my employers are headquartered) for a meet-up with my excellent team-mates and the notoriously Epicurean office Xmas party. But I’ve elected not to go.
“What’s that?”, you cry. “You – Bruce – who plays punk guitar, does kickboxing and wrestles poodles (and wins!) have turned into Shirley Temple!” you mock.
Here’s the reasoning, in the hope that if you are a merry new recruit to the world of MS (I’m a veteran of ’99), it’ll be some help to you.
When you’re newly diagnosed it’s quite normal to be in and out of your neurologists’s office so often that the staff greet you by first name and soon start darting into stock rooms or crouching behind desks as you approach. You’re new, you’re worried and every tiny twinge sets of your anxiety. Later on, particularly if your kind of MS is cyclical remitting-relapsing, you might breathe a sigh of relief and start to think ‘I won’t let this diagnosis change me!’ and potentially push yourself too far. It’s not a good idea to be an MS hero.
As you probably know if you have it, MS is a disease of the auto-immune system. In highly technical terms, think of an MS person’s immune system as being like a crowd of drunk Millwall FC fans waiting for the opposing fans to enter their stadium. When they see the opposition, they’ll beat them up. But once the opposition is defeated, they’ll very likely smash a few windows, beat up some police, their own friends, set fire to their neighbours’ cars and then turn on each other.
Getting even more scientific, there are no police or windows in your immune system, so it will attack your nerves instead, stripping their myelin sheaths which will never regenerate.
As I write this, my eyes hurt if I move them left, right, up or down. This isn’t much fun – you tend to turn your head instead of having to move your eyes which makes you look a bit like a robot in a sci-fi film. But when this happens to me it’s a warning signal. One of my first MS presentations was going effectively blind in my left eye because of Optic Neuritis, which is an inflammation of the optic nerve that makes your eyes painful and vision darkened. (Mine was dealt with by injecting anti-inflammatory goo just behind the eye, a procedure which was pretty low in chuckles.)
I also have an increase in what I call “fizzy fingers” (due to my incorrigible love of alliteration). This is when my fingertips feel numb or full of “pins and needles”. I always have this to some extent – it’s why I can’t play guitar properly any more – and, to my eternal regret, it’s my own fault. When I was eventually diagnosed (3 years after the optic neuritis) my hands were basically not obeying orders – my handwriting was a scrawl, I couldn’t do my own buttons up etc. But I heroically soldiered on before eventually being admitted to hospital and being put on 1000mg of steroids daily in the medical equivalent of tear-gassing the rioting Millwall fans and shutting your immune system down so it can’t do any more damage. But the damage already done can’t be reversed.
So these days, when I get a little bit of a cold I soldier on. But when I start to get other more sinister signs, I give up and take to my bed. While I know that my team mates would love to sit in a room with me and my pathogens, inhaling the gift of a Christmas fever to take to their loved ones, and I understand that the ladies of Oslo have spent many weeks putting up welcoming street decorations, I’m vegging out until the auto-immune Millwall fans go back to their mums’ houses. (From 15 years’ experience, a couple of days.)
It’s not worth being heroic when the risk is irreparable damage (and I have 2 dependant kids, too). Your MS will be different; your level of heroism may be different. Good luck and take care.