Ever tried putting mascara on wearing boxing gloves? Or holding a lovely cup of hot coffee? Pretty tough. My last relapse affected my hands and just for a laugh, they still play up every so often and this weekend was no exception.
Like most relapses, it came out of the blue. One day I was elegant(ish) and my hands were just things that did things hands normally do. I didn’t really give them much thought.
Until the morning I flicked the kettle on and knocked it over, swiftly followed by my cup. Odd. When I left the house that morning, I missed the door handle. Odder.
I tried to explain to the MS nurse that my hands were either a few seconds too quick or a few seconds too slow, they drop things unexpectedly and sometimes they’re so numb, they feel like boxing gloves. It doesn’t sound like such a huge problem, but socially it’s dire.
Putting on make-up is comical – I gave up on eyeliner months ago and mascara wands hurt like hell when they’re poked in the eyes. Lipstick goes on well until, blam, whoops, dodgy line – The Rocky Horror Show’s got nothing on me.
Wine glasses are a minefield. I’ve smashed countless. Be warned, never clink glasses with me, just say cheers and nod. All my plates and bowls are chipped and you can hear me doing the washing up a mile away.
If I’m walking through a cutesy, arty gift shop, I have to keep my hands rigidly by my side or ever so carefully reach out, inch by inch, to pick something up. I can clear a shelf of pottery in one fell swoop. And my days of playing KerPlunk and Operation are long gone.
I used to like craft work but can’t knit any more and the glue gun’s been in the drawer so long it’s seized up. I tried to make a Christmas wreath out of paper hearts and glued everything except the paper. The cat made herself scarce so now I scroll through Pinterest and sigh wistfully.
I persevere though. I am going to invest in melamine plates and plastic wine glasses and I will make that wreath by next Christmas if it kills me. If you see it, be polite and please don’t snigger….
Blogging is weird. I started my blog last September. At the beginning it was a much-needed outlet to download my buzzing mind and create some sense out of the whirling thoughts, fears and expectations tied up in a life with MS.
I read a blogging instruction manual from cover to cover. I’m no techie, but I found a blog theme I liked, uploaded a picture and hesitantly wrote my first post, ‘The Loneliness of The Long-Term Diagnosis’ and I was off. I wrote about make-up, round robbin letters, work, emotions, The Teenager, my cat. I wanted to show that living with MS is not solely about symptoms, appointments and restrictions.
Ultimately, most of us are young-ish when we are diagnosed. We’re in the middle of bringing up our kids, working, studying, carving a niche in the world. MS could be re-named, ‘Life, Interrupted’. I wanted to show that life does goes on, albeit in a more serious, more measured manner. Saying that, I wanted to pull out the humour. Tease the threads of how life is different, yet essentially the same. We still worry about exactly the same things, just with a skewed slant.
I was shy when I told people I had started a blog. I had five views a day. Ultimately, I saw the blog as a diary, and perhaps a present I could give to The Teenager when he was old enough to understand. I promised myself I would write for a year only, until September 2013. A year with MS.
Then everything changed.
Life suddenly got more serious. I ‘lost’ my job. I was betrayed by a ‘friend’. I was in a pretty bad place. Blogging took on a whole new meaning. I joke that it kept me sane, but really, it did. The support I had was/is incredible. I used to be dismissive of the ‘blogging community’. Who needs it? I have great friends, right here, on my doorstep.
Ah, but. Connecting with people from around the world, all of us finding ways to live with this vile, cruel disease, has been (words fail me).
So, to all of you who have supported me, made me laugh out loud at your comments, sent me a cheery Tweet – Thank You. Yup, a soppy blog post…..
Yes, as you’ve guessed by the blog title, I am a singleton on Shameless Commercialism Day Valentine’s Day. But the good news is, I had a Valentine’s card! The bad news is, it was from Tom, the 89 year old pensioner I check in on.
Well, at least I’m not working in an office any more. Long gone are those awful days when everyone else received bouquets of flowers, accompanied by ‘oh, I didn’t know that was going to happen’ squeals from various women jumping up and down at the sight of a few roses.
The same women who, a week earlier, could be heard saying in the toilets, ‘…I’ve told him, if he doesn’t send me flowers this year, he can whistle for, you know…’
Now my inadequacy is shared only with the cat (she watches the letterbox every day) and she’s on my side. I whinge to friends that I hate the tacky commercialism of Valentine’s Day and my heart sinks when all the gooey stuff appears in the shops just after Christmas. No sooner have the ‘Merry Christmas, my squidgy, squashy Boyfriend’ cards been packed away, I’m assaulted by a sea of red and pink. And roses. And fluffy little teddy bears with ‘I Wuv You’ scrawled across their chests.
And what’s this whole thing with chocolates? Oi, loved-up people, you get the flowers, you get the meal out, you get the jewellery. Can’t you keep your smug little paws off the chocolate – it’s for us single ladies. See it as our consolation prize.
Of course, if I was loved-up, I would be starry-eyed with rapture at being presented with a dozen red roses, a Tiffany necklace and a huge box of pralines (my favourites). I would benevolently smile down upon the lesser, single mortals, with pity and not a little smugness. May they too find love, poor, sad, lonely peeps. But I’m not loved-up, so I can’t. Sniff.
This Valentine’s Day then, I will mostly be listening to ‘I Am Woman’ (over and over again), hoovering up the Maltesers I stashed away from The Teenager and sitting on the sofa in my comfiest, slobbiest pyjamas. I may even put a face pack on and paint my toenails. Valentine’s Day? Meh…
I caught the tail-end of a programme the other day in which a man with a prosthetic foot was being interviewed. He was asked if, should a miracle cure become available, would he take it?
He was vociferous in his rejection of this – he was perfectly happy and his ‘disability’ had made him who he was.
Powerful stuff. Mulling it over, I came to a surprising conclusion. MS has shaped and moulded me in completely unexpected and positive ways and given me courage where previously I had very little.
When I was younger I was in a terrible, near-fatal car crash. I vowed to change my life forever if I recovered, and I would never take anything for granted again.
A year later, the scars had almost healed, I could walk properly and I was back to normal. Did I carry that message and always remember how fragile life was? Did I heck. But with something like MS, there is no end point, no point at which you can forget, so we really do need to change our lives and keep changing them, whilst appreciating every small victory and achievement.
I used to hate MS, until I realised that by hating it, I was hating a fundamental part of myself and this was essentially self-loathing. MS is me and I am MS. It is not a separate entity. I went through a dark, lonely, terrifying grieving process and hit rock bottom not just once but repeatedly.
When a chink of light appeared, I was on the up again. I frequently joke that when you get diagnosed with MS, anything else is immaterial. You can cope with pretty much everything life has to throw at you. And I think that is true and a powerful lesson to learn at my age, rather than as a wistful pensioner looking back over a life less-lived.
MS has given me a kick up the backside. It has made me speak up for myself, it has made me more confident and less willing to accept shabby behaviour. My stumbling, my tingling, and dodgy hands are now part of me. I stumble, therefore I am…….