Tag Archives: change

Has MS Changed Me? Hell, yeah …

I’ve been thinking.

MS has almost taken me back to my wild teenage years, when absolutely nothing held any fear.

Take a train to Austria after your last A level? Yup.

I travelled the world, got into numerous scrapes, came out alive and picked myself up. Crossing a river in The Gambia in a sinking ship springs to mind.

Then, when I was 26, I had The Teenager and life naturally took on a more sedate pace.

Which continued for the next 18 odd years.

I settled into a nursery/school/rugby/the many other activities routine. I was in a job I loved, working with a wonderful person but it had no future. However, it was close to his nursery and school and that was all that mattered.

Then, MS. An explosion, obliterating life as we both knew it. I remember a conversation with The Teenager, as he stood on the threshold of High School, when we discussed how we should approach the MS imposter. By this time, I had had my first treatment of Lemtrada and was back on my feet, just.

We decided we should throw ourselves into campaigning and so it was that we attended our first march, against austerity and benefit cuts (‘I’m Not a Scrounger, I Have MS’ placard) back in 2011. The Teenager came with me and was delighted to hear the speakers swearing. He then came with me to awards ceremonies, meetings and discussions. He was interviewed, photographed and involved in all the media projects.

I had changed jobs through this time and was subsequently sacked from it after my diagnosis. The Teenager went through the whole legal case with me, alongside navigating the high school system. But we came back stronger. I got a new job, enrolled in a Master’s and he knuckled down to studying.

Life wasn’t at all easy – I had to sleep a lot, which I think is frightening for an only child with one main parent. I know it still scares him.

Every single event or speech or article I take part in is a blast into the unknown. Public speaking terrifies me. Seriously. Yet I keep putting myself out there and campaigning for disabled rights and acceptance. Most recently, I have been shortlisted for a Wales Online Digital Award and am due to speak live at a conference in Copenhagen at the end of the month. Gulp.

So has MS made me more brave? Erm, yes. What is the worst that can happen when the worst has already happened? I’m still terrified of public speaking, I would like more Photoshopping, a rapid weight-loss solution and a Master Class in public speaking.

However, when I am on stage, I am … me.

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MS Replies…

MS repliesDear Stumbling,

Thank you for your kind and thought-provoking letter (see, I do read your blog, so ner ner ner ner ner, as you so eloquently put it). I think it’s time we had a little chat, don’t you? Mind the step and pull up a chair.

Look, between you and me, I know I wasn’t invited. I’m never exactly welcomed with open arms. I mean, really?

But let’s get a few things straight. Who told you life was going to be easy? You can’t turn the clock back and I’m here to stay, so you may as well get used to me hanging around, whether you like it or not (harsh but true).

Which leads me neatly to my next point. Sure, I’m pretty nasty. I mess up your body and put your brain in a blender. But I’ve been kind to you too. Don’t laugh – without me, would you really appreciate life so much more than you used to? Would you really make the most of every day? I don’t think so. You were quite happily trucking along, making plans, blah blah blah, without a care in the world. Life. Is. Not. That. Simple.

See? I helped you change your life, didn’t I? Yes, I know you lost everything, but we’ll run through that, shall we? Career? If your employer was going to treat you like that, they weren’t worth it anyway. Ditto partner. He scarpered at the first sign of trouble. I saved you the pain at a future date. And stop worrying about finding someone new. Find yourself first, then think about it. So in a strange kind of way, I simply hastened the process of clearing your life out, didn’t I?

And I really do think you should thank me for that. Sure, I prod you and push you over. And? I see you laughing at it now. You turned it round. You used to trip and curse every single time. Now you shrug it off. Life is all about adapting, every single day. Nothing stays the same. And if that’s the only thing I can teach you, then I’m happy.

You’re doing ok. You faced up to me (and to be frank, you’re a teeny bit scary when you do that). I think you are much more powerful than before, despite feeling weaker. Have a think about it.

Anyway, I’ll leave you with that. And please, no more pity parties. Yawn.

Yours forever,


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Chronically Ill, Terminally Depressing?

I'm fineThe builder popped over to see me after work the other day. I was on my sofa, floored by MS fatigue, snuggled into my duvet, watching trashy tv.

As soon as he walked in and saw me, he took a step back, a look of dismay on his face, ‘God, I feel depressed just seeing you there like that.’

If he’d slapped me across the face with a wet fish, it couldn’t have hurt more. I protested, made a joke about it, but it touched a very raw nerve.

I don’t want to be depressing. I don’t want to be that person on the other side of an invisible divide. I saw myself through his eyes and didn’t like what I saw. MS has shoved me under ice. I look the same, but I’m trapped, banging on that ice, yelling pointlessly for my friends on the surface to hear me.

I’ve had to absorb a lot of changes into my life since MS smashed into it like an unwanted gatecrasher at my party. Some of them are huge, but most are small changes I now take for granted – the afternoon naps, the slower pace of walking, the brain mush. To me they are now normal. But seeing myself from someone else’s viewpoint brings me up short. I can see just how much I have changed and I hate it.

Before MS, I was always on the go. I travelled the world, had incredible adventures, and I’ve been strong, independent and vibrant. Looking at myself now, I can see I have I’ve become a shadow of that. My house has become my refuge and I spend far too much time in it. It is comforting. No one can see me trip, hold on to the banisters, drop another glass. I feel safe here.

I know the builder didn’t mean to hurt with his comment. I probably needed to hear it. I want to get my zest for life back. MS is a hefty ball and chain to drag through life, but at least if I’m facing forward, I can’t see it, even though I know it’s there.

At the moment I am standing outside the party, nose pressed to the window, watching everyone else’s lives unfolding. It’s about time I joined in again.

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