I have been fortunate enough to be interviewed recently about my book.
Half-way through, still being recorded, I asked, ‘Gah, am I sounding too positive about MS?’
Rewind two years and the interviewer would have discovered me flat on the floor, holding up a wine glass, chomping on a family-sized bar of Dairy Milk. And no doubt crying. I was in a dark, shadowy and very different place.
How best to portray life with MS, almost three years after being diagnosed? I don’t want to be labelled a ‘survivor’, ‘a sufferer’ or to be hailed as ‘fighting back, despite all the odds (TM).’ I am just me, who has forged an entirely new and unexpected path through the maze that is MS. I’m still eating far too much chocolate, I’m still
fat Rubenesque and I’m now officially over the hill at 41.
Is there such a thing as being positively ok with MS? Hmm. It depends.
If I’m honest, 90% of the time I think I am now used to the vile intruder that is MS. I love my home life, I love my work and I love being in Uni. Life is looking rosy and positive. It’s the other 10% that can be problematic, as anyone living with MS knows.
It’s the relentless fears, the creeping spectre of progression that haunts our darkest moments and I’m not immune to this.
But. In the meantime, as I said to the reporter, I have achieved a lot more since MS than I could ever have dreamed of. Being sacked unceremoniously from work simply for the crime of having MS was merely the start. Being bullied into submission by the very same colleagues, who just before diagnosis treated me with respect, ignited a passion to ‘live well with MS’.
So I am now living a life I love, in spite of MS. MS is with me every step of the way, excuse the pun, and it still continues to trip me up when I least expect it. The dark days are still with me and I doubt they will ever leave, but I am learning to live with them.
The article comes out tomorrow in the national newspaper of Wales. My only fear is the photograph. I am quite possibly the most un-photogenic person ever. The word ‘chubby’ springs to mind, as does ‘Paleo’, meh.
at 41 you are still a kitten … and thinking your Rubenesque is ridiculous … Your mirror must be one of those circus fun factory mirrors … I saw a picture of you … you are very photogenic …. Be proud and happy who you are !!! You face MS and every day you beat MS !!!
Aw, you’re a sweetheart!
I was photographed trying to look mean and moody in a lane 🙂
p.s. pesky photographer probably didn’t get my good side!
Great post, and congratulations on the article.
I agree with you. While I am a little behind you on the MS journey (just over a year in), already I am over ‘suffering’ MS. I am still me… I just happen to have MS. It is a conundrum… Having MS and being happy are not natural bed fellows.
Excellent point – we’re still ‘us’ underneath the MS diagnosis.
funny. Rubenesque? surely nicer than those stick-skinny chicks/birds/laydees? Humour in every form (wit, sarc, dry and deflating pomposity) is how all of us posisitive characters deal with life in all its crappy glory. x
Love it! You’ve got to laugh, haven’t you? Just like my boss today, counting how many times I tripped over and sniggering each time, lol.