Tag Archives: multiple sclerosis

Stupid Is As Stupid Does …

stupidI adore learning.

I was never a gifted academic at school – good grades coming only after a hard slog – but the desire to learn was always there.

Perhaps it is a longing to discover more of the world than is immediately apparent, to get under its skin?

I’m questioning this as I’ve been encouraged to take a PhD, since completing my Masters. Even writing these words seems embarrassing. My second degree, the one that, pre-MS, was going to spring-board me into a promising career as The Teenager would then be out of child-care, ground to an abrupt halt as soon as the first symptoms appeared. After almost ten years of working in a low-paid, part-time job to be available for him, it was a bitter pill.

A Doctorate is an idle, long-held dream. It was something other people did, the clever ones. Not the ones who turned down a University place at 18 to move to Austria instead. If I’d done the former, I would now be a Russian-German translator, and who knows how my life would have turned out?

To get to the point that I could even think about the next step is nothing short of miraculous, and obviously I have the incredible MS treatments I’ve had to thank for keeping my MS progression at bay. But I would like to think it’s also due in some part to my sheer obstinacy. The days, weeks, months I spent with huge sheets of paper dotted around the house filled with random jottings and essay outlines. The fluttering waves of post-it notes on my desk. My tears when my brain refused to comply.

And yes, I tried to give up, many times. It all seemed impossible. Who was I trying to kid? But where does this obstinacy come from? Well, a very unlikely source.

Years ago, a partner of mine (who will remain anonymous although if he is reading this, he will know exactly who he is), told me over and over again how stupid I was. I had no degree back then, just years of experience working abroad and three languages under my belt. He had a degree and a post-grad qualification.

This became quite an issue, with every argument prefaced with, ‘well, as I have a degree, I feel more qualified to say …’. In frustration I challenged us both to MENSA tests. And what do you know, my score was higher. But in a way, the damage had been done. I believed I was stupid (it had been said often enough). And for years after, that voice followed me. Until MS came along and his voice was drowned out.

MS could have been the final nail in the coffin, and it would at least have been an excellent excuse.

But I have other ideas …

Tagged , , , , ,

All Clear On The Campath Front

all clearIf you’ve had a relapse, such as my epic one earlier this year, you almost want it to prove itself.

Mind you, that proof would take the form of lesions on the brain, which is definitely not a good thing.

So I was torn when I had my last MRI. Having just re-entered the real world after being locked in an abysmal cycle of worsening symptoms for over five months, I was enjoying my freedom.

The thought of having to factor in another course of Campath in amongst getting The Teenager University-ready was something my brain just couldn’t compute.

On the other hand, if the scan showed up nothing, what on earth was going on? Is this it? Can I expect more of these epic MS smacks-around-the-face? Would this be my life from now on?

Anyway, the excellent news is, my scan is clear, and that is all that matters. No disease progression. No need for further treatment at this stage. My brain is just fine.

After saying, ‘thank you, thank you, OMG, thank you’ over and over again to my MS nurse who imparted this wondrous news, I then asked, ‘erm, so what do I do now?’

Well, nothing. It’s a kind of waiting game. The relapses I’m experiencing are normal for my type of MS. And there you have it, MS in a nutshell. You just don’t know. You’ll never know, from one day to the next, how it’s going to hit you. Every day is a lucky-dip.

Take this week. On Monday, I was awake. Fully awake. No yawns, not much pain, minimal brain fog. Apart from the usual twinges and walking in to walls, I was fine. On Tuesday, the nerves in my legs were on fire. I fell asleep after work and my hands went numb with alarming frequency. I tripped over in the kitchen, scattering chopped rosemary all over the floor (can’t blame the cat this time).

I’m beyond relieved I don’t need treatment this year; every day I wake up and it’s like remembering the glorious news all over again. The absolute relief is immense. Yet the fear hasn’t receded.

But hey, this is life. As The Teenager quoted to me earlier from John Lennon, as we were waiting for him to have his meningitis jab, ‘Everything will be okay in the end. If it’s not okay, it’s not the end’.

Tagged , , , ,

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

Tagged , , ,

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 …

Tagged , , ,

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?

Tagged , , ,