Sunday 13 September 2015

#ChallegeMS - how MS feels

First off, MS is a very individual experience. Everyone's symptoms are different, and, even when they are similar they effect everyone very differently.

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Should you wish, here are some suggestions that you could try (a la "ice bucket challenge") to experience some common symptoms

1. Optic Neuritis
The visual disturbances that come with optic neuritis can range from mild and slightly irritating to sever and difficult to deal with. For me they are characterised by general desaturation (just play with the filters on your favourite photo editing programme) and a specific loss of the colour red (very noticeable in London with all the red buses!). There is also quite often a general visual disturbance which makes it hard to see detail - choose a fairly grey day and walk around with your sunglasses on.

2. Numb legs and feet
I don't have much feeling in my legs below the knee, certainly pretty much none in my feet - I have to look to check if I have socks and shoes on or not, and to make sure where they are in relation to the rest of my body - they have their own pathway in time and space (!).  What does it feel like? Put on a couple of pairs of really thick socks.

3. Numb hands
My fingers are all pretty numb too. It makes touch typing quite amusing if I happen to miss placing my fingers on the home keys! It makes it difficult to put in earrings, do up necklaces and buttons and generally anything that requires mine motor skills. How does it feel? Trying putting on a couple of pairs of snug-fitting rubber gloves.

4. Balance problems
I can walk a few steps without losing my balance; it is safest to use walking aids (or make sure that there is some furniture to grab on to). To replicate this you could either try spinning around really fast until you get dizzy (you know how much fun that was when you were a kid!). To make you more conscious of your balance and walking get a nice heavy book, balance it on your head, and go about your day.

5. Fatigue
Fatigue is one of the difficult symptoms people deal with. It is invisible and misunderstood. It goes deeper than just being tired and needing a nap (although that should never be turned down). Fatigue is crushing. It comes on suddenly. I'll be walking, or standing, or just going about my day when I hit the wall. Then I have to stop. Immediately. I have to sit down. Immediately. Fatigue can be managed, you can plan your activities to make sure you don't run out of spoons. At the end of the day though, when fatigue hits that is it. Difficult to replicate this one, but a little way towards it would be getting some of those strap on weights and attaching them around your ankles and wrists and strenuously going about your day.

There are many more symptoms than the handful above; the best way to understand them, really, is to talk to people who have MS and find out what their personal experiences are.

#ChallengeMS 2015