I love reading my daughter bedtime stories, and the other day, I got an email from my wife, letting me know that she had ordered a complete set of Mr. Men books for us. Now, I remember these from my own childhood, but our daughter loves them and they never seem to have gone away.
If you’re that way inclined, you can apply some of the titles to living with MS.
I must say, my long-term memory is still pretty good (especially with regards to song lyrics and TV trivia), but my short-term is shot to pieces, like so much holey cheese. Is this MS-related or just a natural part of the aging process? Who knows, but it’s sometimes good to remember that it’s not always MS.
I can definitely relate to this chronic over-eater, especially when I’m on a course of steroids. It’s ironic that our appetite is increased exponentially when we have that revolting metallic taste in our mouths, making everything tastes disgusting! In my opinion, the taste seems to hang around a lot longer with oral steroids compared to IV.
From things I’ve read, there’s a theory that people with MS can have an overactive thyroid gland which can mean that they either gain weight or continue to lose it regardless of how sedentary they are (hi there). I know, there are worse symptoms for people to talk about, and I can’t pretend that I wasn’t thrilled to recently go down to my smallest jean size since the age of 14, but it gets pretty old when my mother is practically force-feeding me with a concerned expression on her face.
Mr. Bump / Mr. Dizzy / Mr. Muddle / Mr. Clumsy / Mr. Worry
If I’m feeling particularly low, it can seem that some of these are written specifically for people with MS. They might as well have written ones called Mr. Fatigue or Mr. Demyelination (that last one probably wouldn’t be a massive seller, admittedly).
For evidence, see my description for Mr. Lazy above. Also, whenever my legs are having a particularly ‘draggy’ day, I have a worrying tendency to talk to myself under my breath. Not very attractive.
No one likes to be told that they’re being ‘brave’, especially with an accompanying frown/sigh / head-tilt combination. And when it’s directed at me, I just get embarrassed. Because really, what are the other options? ‘Brave’ implies an element of choice, but we either have to get on with it or… we don’t. There was recently an incident where somebody included my Twitter handle on a Follow-Friday list of people labeled ‘MS Warriors’. I thanked them for the compliment but said that actually, on that particular day, I was well and truly losing the battle. I’ve not been included since – was it something I said? Similarly, the oft-repeated truism, “I have MS but it doesn’t have me”. Ugh. I know I’ve said that myself in the past. But seriously, for all the Scrappy-Doo-esque, gung-ho sentiment, sometimes MS can have me six ways from Sunday – and there’s not a darn thing I can do about it. It’s a daily struggle, yes?
There was a recent installment of Totally Unhelpful News for The Chronically Ill which said that the walking speed of a person with MS can be used as a guide to how disabled they will get, as well as a guide to their quality of life. Now, this may be true and it may well be based in fact – but I don’t think it’s massively helpful for people in our collective leaky boat. I have visions of people waddling down the street, stopwatch in hand, cursing their luck if they’ve dropped a couple of milliseconds off their own PB. We have enough to deal without judging and testing ourselves.
Mr. Perfect, Mr. Cheerful and Mr. Good
Hey, I’m trying… and that’s all any of us can do, right?