Oct 26 2013
16 Comments
Symptoms and Treatment

I’m Not Failing, I’m Sleeping…

sleep tightI had one of those earth-shattering, life-changing  moments of clarity the other day.

I closed my eyes at 10am, just to have a quick cat nap.

Two hours later, I woke up. I was incensed, maddened by the sheer waste of time and looked with dismay at my unaccomplished ‘To Do’ list.

As I stumbled into the kitchen to make a cup of strong coffee, tripping over the cat (she’s tiny but deadly), I stopped in my tracks. MS fatigue. I expect everyone else to take me seriously about how debilitating it can be, how much of a real symptom it is. And yet… I don’t.

Instead, I see it as a major inconvenience, something to be tolerated if I am to get through the day intact. It’s a distraction, holding me back from my real life. Or is it? I take my other MS symptoms seriously and factor them in, so why don’t I do the same with my most significant symptom, fatigue?

Over the last two years, I have railed against the pointlessness of all this sleep. I flounce to my sofa in anger, utterly fed up at yet another hour passing me by with absolutely nothing achieved. This had to change.

Rather than getting angry, I am now going to start respecting this fatigue, just as I accept that nerve pain, foot drop and stumbling are part of my life now. I can’t change it, so I will accord it the same respect. The fatigue is my body’s way of telling me to slow down, my brain needs a rest. I will view it as a valid symptom, not a major annoyance.

I tried out this new way of thinking yesterday. I had some things to do in the morning, and could feel the fatigue creeping up. Back home, my brain shut down. The To Do list was put to one side, I got my duvet out and fell asleep. I woke up feeling better, accepting that this is my life now. I can’t change it, but I can change how I approach it. I can absorb it into my life or I can go on forever feeling angry and a failure.

And you know what? I feel that in some way I have made peace with myself. I’m not failing any more.

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Oct 24 2013
8 Comments
The Teenager

Paper Round (And Round)

read all about itIn my day (here we go again), I had a job when I was 14. So when The Teenager turned the same age in August, we had a little chat.

I explained that had he been born 100 years ago, he’d be going down the coal mines as we live in Wales. Luckily for him, that was no longer a viable option, so he’d have to look for something else.

Last summer he set himself up as a car-washer, lugging round a bucket and sponge, knocking on doors. He did quite well until he got bored with windscreens and wheel trims.

So with my rousing speech ringing in his ears (it will give you discipline! it’s character-building! you’ll be earning your own money!), he went to the local newsagents and signed himself up  for a paper round. He also seems to have signed me up too.

He started on Monday, along with probably the most apocalyptic rain to hit in months. I waved him off at 6.30 am (You can do it!), set my mobile ring tone to loud, made a cup of coffee and waited. Sure enough, within nine minutes, there was an anguished phonecall.

‘Come and rescue me, pleeeeeaaaaase. I’m soaking, I can’t see anything for the rain, my papers are wet and I wanna come home.’

I trudged out to the car and searched for him. There he was, a miserable, hunched figure holding a luminous bag bulging with undelivered papers. He’d managed to cram three soggy newspapers through letterboxes then got lost in the maze of back streets. I set the sat nav and we searched through the driving rain for the remaining houses. By the time we got back home, we were both thoroughly fed up.

After we’d dried off, it was time for another chat (lecture). ‘You should have done a recce the day before. You should have planned your route. Responsibility, discipline,  blah, blah, blah.’ We finally came to a tearful agreement. Each day, he would find the next street on his route and I would meet him there, so by the end of the week, he could confidently do the round himself.

I have my reservations how long he’ll last. Just this morning I asked him what he would do when he was in London with his dad one weekend a month. Quick as you like, he replied, ‘well, you’ll do it for me, won’t you?’

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Oct 22 2013
6 Comments
Work and Studying

Grace Under Fire

everything will be ok in the endA year ago today, I was called into the boardroom at work and fired.

No warning, no procedures followed, this was simply the culmination of a terrible year of systematic bullying which began shortly after my disclosure of MS. According to my employers, MS had made me a liability in the office and I was told to leave.

Looking back over that horrific day, I can see just how far I have come. I am no longer that cowed, bullied, humiliated person who got in her car and drove home in a daze, stunned by what had just happened.

This all took place during my MS diagnostic process, itself a torturous time of relapses, waiting, scans and more relapses. So not only was I facing up to a new life with a degenerative illness and all that entails, I was also at my lowest ebb from the relentless bullying meted out by my colleagues.

At first I was too tired to fight back. Bullies are clever. They slowly dismantle your self-esteem bit by bit. Undermining you, they make you doubt yourself and your capabilities. They shift the goalposts so often you can’t keep track. When that doesn’t break you, they will ostracize you, spread lies about you, snigger as you walk past or suddenly stop talking when you enter the room. School yard tactics maybe, but incredibly effective in the workplace.

Fast forward another few months and my employers settled out of court after I launched tribunal proceedings. I’ve been asked many times why I have never named the company or sector I worked in. I’m under no legal obligation not to do so, but I am not a malicious person. To do that would mean sinking to their level, playing them at their own tactics. Why bother? I have walked away with grace, with my head held high.

Instead, I now campaign for MS and employment rights and I try to help others going through similar situations. Isn’t that a better use of my energy than holding on to bitterness and regret? The few times I think about my ex-employers, I feel saddened that these people felt it necessary to bolster their own fragile egos by deliberately inflicting pain on me when I was in such a vulnerable position. I needed support and help back then, not merciless bullying.

That which does not kill you can only make you stronger? A well-worn cliché maybe, but so very true.

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Oct 20 2013
6 Comments
Symptoms and Treatment

What Was I Saying Again?

goldfish‘It’s there, that watchermacallit on the thingiemabob. Next to the dooby-doo.’

This was me yesterday, explaining to The Teenager where an important form he needed for school was.

MS has been having lots of fun with my brain and it’s only getting worse (it’s got absolutely nothing to do with turning 40 of course). I just can’t seem to remember the most simple words.

I’ll pause mid-sentence, sifting through years of education in my mind before finally landing on the word I’m looking for, so happy to have found it that I’ll inappropriately yell out ‘banana! I meant, banana!’. Or some other word that completely escaped me five minutes earlier.

I also make up new words. Like last week when my mum asked me what I had planned that morning. ‘Oh, it’s flab day’, I replied. She sighed and said, ‘oh sweetheart, I know you’re unhappy with your weight, but think positively. Have you tried chick peas?’ I had to tell her that I was indeed unhappy with my weight, but I was actually going for my flu jab.

In my glory days, I prided myself on being able to converse in three languages (four if you count Glasgwegian). Now, I can barely get by with one. Plus, I also have the ignominy of repeating myself, thanks to bizarre short term memory loss. I am in danger of turning into the dinner party guest from hell, the one that’s invited along for a bit of comic relief.

I have visions of Christmas Day twenty years from now, with The Teenager taking his children to one side and gently reminding them to be patient with Granny Stumbling and not to laugh when she can’t remember the punchlines to jokes, or when she asks them for the umpteenth time how they’re doing in school. Just re-fill her sherry glass and hand her a copy of People’s Friend. And under no circumstances are you to bring out Pictionary or Scrabble.

For now, although socially dire, I manage as best I can. In shops, when I can’t remember what I went in for, I’ll look at my watch and dash off, pretending I’m late for some appointment. In restaurants, I’ll point to the menu, as if my mind is on higher things than ordering lunch. And when I’m out with friends, I’ll….hang on, what was I saying again?

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Oct 18 2013
14 Comments
Blogging

In The Company Of Giants

ChrisThe MS Society Awards 2013 at The Dorchester yesterday were, in the words of The Teenager, just awesome.

To be in the same room as so many incredible people with so many inspiring stories and achievements is impossible to convey and to be a finalist in the same category as St Bartholomew’s Hospital and Shift.ms was humbling. I had no expectation of winning and was over the moon to receive a ‘highly commended’ certificate and bottle of bubbly.

There’s far too many highlights to mention, so here’s a flavour of how the day unfolded: we arrived early enough for The Teenager to be photographed posing next to a £1 million Bugati parked outside the hotel which he quickly tweeted to his friends.

A champagne reception was then the perfect way to meet new people and put faces to names before being ushered into the ballroom for lunch. I was thrilled to be sitting next to Joseph Carter, the Director of MS Society Cymru and on the same table as David Baker from St Bartholomew’s Hospital with whom I had a lively and illuminating discussion about Alemtuzumab.

Lunch was superlative, the surroundings beautiful, but most importantly, the awards were emotional, moving and thoroughly well-deserved. The final announcement, for the MS Lifetime Achievement Award went to our very own Stuart Nixon (hardly a dry eye in the room). The Teenager was busy having his photograph taken with as many celebrities as he could find – a big thank you to Stephanie Millward for signing autographs for him and letting him hold an Olympic torch. In all the excitement, I forgot to take any photographs myself (d’oh!), but the day passed in a whirlwind.

It was brilliant to have people come up to me, have a quick glance at my shoes and ask if I was Stumbling In Flats. To be told how much people loved my blog was an award in itself and I’m still floating on a high (possibly also due to the champagne…).

What can I say? I truly was in the company of giants. If the future of MS is in their hands – through research, through fundraising, through volunteering – then we are in very safe hands indeed.

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