There’s plenty written about what MS is, but what isn’t it?
It’s not:
- An ‘easy’ illness (I’m probably not the only person to be told, ‘Well, thank goodness it’s nothing more serious, eh?’)
- An excuse – it is what it is and I won’t be apologising for it
- A competition – why tell me your MS is so much worse than mine? If it makes you feel better, go ahead; it just makes me feel guilty
- Always obvious – if you passed me in the street, you would have no idea I had MS (until I stumble, but hey, I could be drunk?)
- Cushy – you might think enforced sofa-dossing is a dream come true, I hate it with a passion
- The same for everyone – put 500 MSers in one room and you’d have 500 different stories
Recently, stem-cell treatment for MS has hit the headlines, and how – all the tired phrases were rolled out: ‘MS sufferer’, ‘cut down in the prime of life’, ‘tragic’. Funnily enough, I am none of these. However, I have been contacted by various people over the last few days all telling me the same thing – MS is curable! You can get back to real life now! You can dance again!
Now, anyone who has ever seen me dance will know that this is not necessarily a good thing. The only shapes I throw are the bodies of other people across the dance floor as I bump into them. Yes, the news from the trial is wonderful and I couldn’t be happier and of course the media loves a good news story, but behind the headlines there are thousands of us, millions of us across the world, just trying to get on with life.
MS, and more importantly, living with MS, has changed phenomenally over the last three decades. Sadly, the public perception of it is lagging far behind. Behind every diagnosis there is a unique life story and we don’t want that to come to an abrupt halt just because our brains threw up one lesion too many.
Good points. What has been discovered with stem cell treatment is a great advance, but a cure?….certainly not at this point. It will take a long time for it to be studied, perfected and accepted. When it does happen, I’m certain we’ll all gladly trade our stories for bodies that behave.
Well said!! It’s a wonderful story, but we can’t lose sight of the day to day life of most MSers. I’m hoping the news just gets better.
And me too, I would love it if my body actually listened to me 🙁
X
How true, one friend rang me up with the words there’s a cure !!!!!
Bloody Daily Mail, and why do they think the need to dance is what occupies my every waking moment. At no stage in my life have I thought the only way out of this is to burst into a dance. Although as a Prison Officer I did have to use the radio call signs Foxtrot and Tango maybe subconsciously I needed to dance. I think my only hope is if they remake Thriller and I can be cast as Walking Zombie I think I have the moves for that part
Yup! My phone/emails went crazy as soon as the story broke, lol. And yes, this preoccupation with dancing is somewhat worrying. Is this the pinnacle us MSers should strive for??
Please sign me up as a fellow-zombie if you get the call?
x
I read this http://www.nhs.uk/news/2015/03March/Pages/miracle-stem-cell-treatment-for-multiple-sclerosis-reboots-immune-sytem.aspx after hearing of this miracle “cure”. I honestly don’t think there will be a cure in my life time, they don’t know what causes MS to begin with. Doesn’t mean I am wallowing in self pity and laying down to die tho, like some people think I should. More treatments yes, but I don’t think an effective cure for all types will happen until they know the cause (unfortunately).
I don’t play MS bingo with people, if they want to start saying they are worse for what ever reason, I just stop talking to them lol Its not a game to see who can get those most pity or pats on the head. yes it sucks, but attitudes like that make it worse.
That’s a brilliant article, thank you so much for posting – making sense of the avalanche of headlines.
I tend to find the ones who play MS bingo are the ones with very little else in their lives, which is a shame, as their attitude is alienating to newcomers. My MS circle of friends have hugely varied and interesting lives and when we get together, MS is a small portion of what we talk about!
X
I find the same, they have let it become everything in their life :/ of course you are going to talk about it among friends, but it isn’t the only thing you(or I when with friends) talk about. there is so much more in life to talk about 🙂
There sure is! I love catching up with my friends and talking about everything under the sun and only briefly touching on MS. Refreshing!
X
Lol cure!!! if only. Love the blog I drop by from time to time when I am not to busy having fun. I tell everybody to smile it confuses those who wish for us to be sad. Yes we have MS but it could be worse.
Have a good day XX Don
Brilliant! Smiling is worth a thousand explanations, MS-wise.
x
Well, I’ve always hated Daily Mail, since I had to waste my summer in Rookwood, listening to two old bids going on & on! The one used to ask every day for a Daily Mail, until the one day I got so tired I had to scream at her to tell her to shut it! Now, I spent nearly 5 months of my precious time there, only to be told that this paper is telling people they can cure me?! I hate the paper for a) talking junk and b) reminding me of the horrible old troll that I had to spend my nice summer listening to!
You poor thing! I feel your pain. I seem to know a lot of people who swear by everything they read in that paper, bless their misguided souls.
Why were you in Rookwood?
X