Tag Archives: multiple sclerosis

What A Week

graduationIt was my graduation on Monday.

I had booked my cap and gown, RSVP’d and panicked for months about walking across a stage in front of hundreds of people.

Conundrum – should I look at my feet when I walked or look straight ahead and hope for the best?

MS foot-drop is sneaky.

I got there early, accompanied by my best friend and boss (an honorary title) and we picked up programmes to flick through while we waited. I found my name (Masters Distinction!) then idly looked at the Awards pages. Erm, my name was there – it’s quite unusual, so it stood out – and I was there, with the MA Humanities Award for academic excellence.

Well. I beamed from ear to ear. I showed the boss, who looked as surprised as I did, given he’d seen me weeping over endless essays, surrounded by books and empty coffee cups on a regular basis. Or more often than not, on the sofa, poleaxed by fatigue. I felt a huge sense of … achievement. And something more than that – the feeling that I had put MS in a box, that I had done it despite everything it had chucked at me.

All too soon it was time to fetch my gown. My cap was too small (big head?) and I faffed around with grips to keep it in place. Then suddenly I was in the hall, and then walking in a snake-line towards the stage. Whoah. I duly handed in the slip of paper I’d been given to the booming announcer and there you go, I was walking – slowly, carefully – across the stage. I shook someone’s hand, grabbed my certificate and then the nearest banister.

It was a brilliant ceremony, despite my fears. And the week just got better. On Wednesday, I found out my dissertation story had been long-listed for an award, and I’m keeping everything crossed for the short-list. Not only that, The Teenager wangled free tickets to the Coldplay concert (I don’t know how he does it; inherited charm?).

Sadly though, it’s back to earth with a thud. My days are once again filled with concrete, roof joists and leaking buckets. From the lofty heights of academia to underground sewage pipes, the life of a building project manager is rarely exciting. But in the back of my mind, I’m replaying the moment I discovered my name in the Awards pages …

P.s. Don’t panic – I haven’t suddenly had a baby. The photo is of me and the boss with my friend’s son #cute

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And Exhale …

exhaleAfter The Teenager collapsed in June, we were so lucky for him to be referred to a neurologist, thanks to the advice of one of the fabulous MS nurses.

Within the month, I was sitting with him in my usual MS clinic, him fidgeting on his phone, me controlling my breathing.

I had been there just the day before, for an MS nurse appointment, hoping for the results of my latest MRI scan (nothing yet, gah).

We were called through by a neurologist I hadn’t seen before and he instantly put The Teenager at ease. He took a detailed case history then ran him through an extensive round of tests, a little hampered towards the end by The Teenager’s exceptionally ticklish feet.

The upshot is, there is nothing obvious that would point to MS.

I let out the breath I had been holding.

However, there is something a little odd in his presentation so he is being sent for an MRI of his spine. And that’s fine, I can deal with that. I think. The neurologist explained about blood flow through the spinal cord and blockages. It could be a lot of things, but probably not MS.

What can I say? The relief is immense, for both of us. We just needed to know either way. His collapse was unexpected and shocking.

So now we can concentrate on his summer of exploration, that strange suspended time between A levels and University. Before he heads off on one of his many summer trips though, he has my graduation on Monday to sit through …

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I Like Long Walks On The Beach …

datingI’ll be candid – I was dumped immediately after my MS diagnosis.

Brutal, huh?

Yep, and then some. Mind you, it made life somewhat easier;

I didn’t have to give two hoots about what a partner thought. What partner? It gave me the space to concentrate on The Teenager and Me.

And for the last five years, it’s worked out superbly. I don’t have to worry about , ‘I’ll do what you want this weekend, dearest!’ (if The Teenager is out, I’m having an epic nap), or ‘what d’you fancy for dinner tonight, my sweets?’ (when your eyeballs are closer to the kitchen worktop than your face).

So, I chunter along, pootling around my plants and talking to The Cat, which, according to The Teenager, is precisely my problem. I’m too used to being on my own.

Perhaps. Or perhaps I’m scared of letting someone in to my space?

Perhaps I’m scared of being rejected?

I’ve mentioned before, but my dating profile is hardly enticing:

’43 year young, multi-lingual, well-travelled, peep. Divorced, single parent (other parent is very absent, like 3,000 miles away), oh, and I have an incurable neurological illness. But I look well!’

Therein lies the nub – I’m suspended between having an illness without looking like I have an illness. It’s mostly invisible, therefore, it’s what I tell you it is. And, like I said before, you only see me when I’m well. When I’m ill, I stay at home, with only Netflix and The Cat for company.

I miss being close to someone. I miss having someone who cares about me on a day-to-day basis, not merely during six month MS check-ups. I care about others, but there is that missing layer, when others will care about me; how I’m feeling, how that old fatigue is going, how my balance is doing.

In the back of my mind, I fear that this is it. Forever. According to some websites, I have more chance of finding love after 40 than I have of being in a plane crash.

Really?

Is that it?

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Distinctly Over The Moon …

graduationThe final Exam Board marks for my Master’s were released by the University last week.

I’d already found out that my dissertation had gained a distinction (worth a third of the course marks) which for me was more than enough.

The other two-thirds was made up of six modules, most of which I sweated buckets over. I was going to be completely content with a Pass.

Reader, I got a Distinction. I know, crazy, huh?

Looking back over the last two years, each essay, each critical piece is interwoven with angst, MS symptoms, treatment and relapses. And that’s without guiding The Teenager through A levels and growing up. Plus dealing with a fussy cat.

Near the beginning of the course, I almost chucked the towel in, such was the extent to which it pushed my battered brain to almost impossible limits. This was totally out my remit but I figured I had given it a go, it didn’t work out. C’est la vie and all that.

After I had spoken to a tutor about how to withdraw from the course, I sat in my car and cried. Then I got angry. I should have been happy, now that the pressure was off. Maybe I could take up gardening or embroidery; something relaxing. But I felt a twist in my gut that hurt more than the brain-ache.

So I persevered. I’m not going to lie, I hated a lot of it, but this was offset with falling in love with literature all over again. During one of my relapses, I had found it impossible to read anything, so the joy of flicking through books, highlighting important points and soaking up the words was incredible.

Most of the essays were a nightmare and the critical elements drove me to distraction. As the course progressed, it felt like I had a fight on my hands against that most frustrating of MS symptoms, dodgy memory. Swiftly followed by fatigue, relapses, blah, blah. MS seemed determined to thwart me at every juncture.

It’s odd. I don’t fight back against MS – the whole ‘fighting back’ thing gets my hackles up; I’ve learned to live with it, adapt to it and get on with it. But the Master’s felt like a fight. Perhaps it’s pride, I’m not sure.

Anyway, my final essay had been handed in, many with time-extensions. People asked me what I would do when I graduated, which made me chortle. Probably nothing, apart from appreciate that I had done it, despite everything. I doubt I can fashion a career out of a Masters in Creative Writing. I’m quite happy in my job, bossing labourers around on building sites and working out how much a Porta-Loo will cost.

But, you know what? I have a germ of an idea for a novel.

Perhaps I’ll get that first sentence down on paper and see how it goes …

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If You Were Still Here …

dadFather’s Day has always been difficult for me.

Dad died aged 35 a couple of months before my 5th birthday, from complications arising from his MS.

I don’t have clear memories of him, just a few snapshots in my mind, but I do remember the day he died.

I waved him off to heaven from a window, still wondering whether the bottle of medicine I had dropped by accident had anything to do with him leaving. I remember feeling desperate rage at whoever had taken him and wouldn’t give him back.

As I grew up, the concept of MS receded into the background; I simply regarded it as an illness  that could make people end up in wheelchairs, like my dad. I studied photographs of him, tracing his life from bright-eyed optimism to darker ones of him slumped in his chair. The difference was shocking and incomprehensible. I filed MS away in my mind.

Every year throughout primary school, the week leading up to Father’s Day was torturous. I would have to tell the teacher I couldn’t make the card, the gift. I was given other projects to do, seething with envy as my classmates spent hours chatting about their dads while they cut out bits of coloured paper.

One year, we had to draw a picture of our family. I don’t know why but I had a sense of overwhelming shame that I couldn’t put my dad at the beginning of the line of people. Instead, I drew my brother standing on a large rock, followed by my mum and then us, in the hope that as the teacher glanced at is, she would assume the figure was my dad.

Throughout my angst-ridden teenage years, my outrage against the whole world at the loss of my dad led me to backpack to Norway for six weeks after my GCSE’s in a bid to trace one line of my dad’s origins. It would take another six years before I accomplished this, but during that trip I felt more connected to my dad than ever before.

As I got older and life opened up, it was the major events that I missed him the most – my wedding day, when I gave birth to his grandchild. I couldn’t help but wonder what he would say, would he be proud of me, what would he look like.

And then, MS happened. I was 37. Suddenly, I needed him more than ever. He would be the only person who would completely understand the confusion, the anger and the fear. I hated him and I loved him. I hated him for not being here and I loved him more as I now had an inkling of what he had gone through.

I felt incredible, overpowering sadness that he was born a few decades too early to have access to the treatment I now have. There were no MS nurses, no DMT’s and no real understanding of this illness. It was termed ‘creeping paralysis’ when he was diagnosed back in 1970.

From the stories I hear, my dad was a determined and wilful person, with a vibrant and somewhat unconventional personality. If he was still here, I would love for him to be proud of me and how I live my life despite MS.

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