The Unwritten Script

There are certain expectations placed upon you when you suddenly become ‘disabled’.

In my case, I was duly sacked from my job ( I was a ‘liability’), dumped by my partner (the future was too uncertain; I mean, really?) and cast into an almost unrecognisable and vicious world of battles and tribunals.

Simply because I woke up one day with a ‘health problem’.

It’s no wonder the media labels us ‘warriors’, ‘battlers’ and ‘inspirational’. We ‘fight’ (often courageously) and we ‘campaign’ (for the same rights as everyone else).

Mostly, it’s not because we want to, but because we have to.

Tick the disability box on a job application and you’re in a different world (tokenism or the bin). Finally receive a Blue Badge and you fight the public if you ‘look ok’. Tentatively start dating and you face the ‘when do I tell them’ dilemma.

So what happens when you tear up that script? If you don’t accept the DWP can understand the difficulties you face, you’ll face a tribunal. If you don’t accept the nasty stares and comments when you use a Blue Badge, you face confrontations which could spiral (it’s happened).

And not only that, you’re pushed into proving yourself, over and over again. And then told, ‘well, you can do it, so what’s your problem?’

Should you prove you can or you can’t?

I realised this today when I was in work. I was nearly fainting from Uhthoff’s – MS heat intolerance- and I pushed myself to the point of near-collapse, merely to prove a point. I paid for it, ten-fold. Five minutes of pushing led to an hour of recovery. Is it worth it?

Tradition would dictate that, as a disabled person, I should accept the gracious help of our depleted welfare state, stay at home, keep quiet and get on with disappearing. And that’s where the trouble starts.

In our hundreds of thousands, we are refusing to accept the new PIP or ESA guidelines. We are standing up to everyday discrimination – taxis refusing to take us on short journeys, trains refusing to accommodate wheelchairs, and we often make the news (courageous, battling this and that illness, the usual script).

Remember the last General Election? Those endless newspaper double-spreads about how this or that Government could affect your voting choice? Was there a disabled person in amongst them? Probably not.

In fact, I was so angered at this, I contacted the BBC and made a short film asking why not one politician addressed how 11 million disabled people in the UK could be affected. Of course, nothing changed.

And still it continues, bar a few extreme (but sadly common) media-highlighted examples. Especially if the person is famous or has a lively social-media profile.

So where do we go from here? How can we persuade the Government, and the public, that we have a voice? That we can do remarkable things, just like everyone else? That we’re not ‘special’, ‘inspiring’ or any other insipid, patronising label that can be stuck on us as a gift from above?

I’d love to hear what you think …

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Being A (Patient) Patient

A couple of years ago, after meeting my neurologist for the usual review where we count up the brain lesions, he handed me a leaflet.

Not the usual ‘Coping with MS’ thing, it was a shout-out for volunteer patients to assist medical students with their fourth year clinical exams.

Always up for a challenge and happy to pay back even a tiny bit to our stupendous NHS, I signed up as soon as I got home.

Yesterday was my second time and I was assigned to the ‘Neck Station’, next to the ‘Eye Station’. I was picked up by taxi and whisked to morning coffee (sadly denying myself the chocolate biscuits, pesky low-carb plan) and a chat before the exams started.

I was to present with a sore neck and difficulty swallowing (not too far from the truth sometimes), and was paired up with a doctor. We ran through the scenario, he prodded my neck (weirdly, it seems the Grave’s from Campath might just be playing up again, as I had a ‘thick neck’), so getting into the role wasn’t too much of a stretch.

And it really is like acting; I saw fifteen trembling medical students and of course, it had to be new every single time. I wiped my brain (amazingly easy thanks to MS) before each came round the cubicle.

By student seven, I realised what they should be reporting back to the doctor and  willed them to answer correctly; I now knew more about neck swellings than I ever thought possible. They all made me swallow water, stick my tongue out, stand up, sit down. A bit like a PIP assessment but much, much more fun (free neck massages, bonus).

The main downside was the unexpected request to roll my trousers up. Hmm. Hairy legs covered in bruises from my usual habit of walking into doors and walls. A great look, and letting them do it fifteen times was awkward.

Anyway, if you ever get a similar request, I’d give it a go. Apparently the lunch is fabulous (I was stuck with my packed lunch of olives and protein). One particularly wonderful student recited back to the doctor that I was 34, relaxed and happy.

I may not have shaved my legs, but having ten years shaved off my age was priceless.

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The One Where We Almost Go Under

I work hard, and so does my Boss, aka Best Friend.

He employed me when no one else would and understands more about MS than anyone I know.

He knows exactly why I can sit on a staircase and nod off within three minutes, or indeed a pile of plasterboard.

He can see my brain go numb when we talk about the next phase of building work. He even picks me up every day to make my life easier, and there’s always a fresh coffee waiting for me in the van.

So when we arrived at our latest project last week and I was so bone-tired I slumped on the doorstep, I had no idea of what was to come.

After a quick catch-up chat, he opened the van; his drill is always floating around at the back somewhere. But this time it wasn’t. Weird. Searching for it, he pulled the ten sheets of plasterboard he had bought the day before to one side, as they were hiding the shelves.

They were all empty.

Every single power tool was gone. Stolen. Half the van was bare. Someone, probably several people, had emptied his van of everything they could carry. Fifteen to twenty power tools were stolen. The cost runs into thousands, having been built up over the years.

We were left with a bag of hand tools and a radio.

I don’t think I’ve ever witnessed my friend so broken. His van is precious, and without it we don’t really have a business.

So, to whoever walked or drove off with a van full of tools, neatly boxed, perfectly stacked, you have absolutely no idea what you have done.

I’m trying not to be bitter. Bad things happen. But to clear out an entire van is beyond cruel. It’s a livelihood. Several.

A few days on, our mood is still sombre but we’re managing. We’ve pulled in favours from friends in the hope that we don’t let our customers down. But every time I look in the back of the van and see the empty spaces, my stomach lurches.

It’s a massive blow but I hope we will come back from this. The timing is terrible, MS is playing up and we’re scrabbling around with one new drill (hundreds of wasted pounds) and a list of prioritised tools, a kind of shopping list. What do we need the most, right now? (I voted for a little hand-held blower, the Boss for an angle grinder, gah).

To be robbed so comprehensively is utterly breathtaking.

Sadly, at least I now have an idea of what to get The Boss as a birthday present next month …

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Seeking Out The Losses

There are plenty of things I have lost since MS.

In fact, looking back, life over the last six/seven years seems mired in loss – partner, job, career, balance to name but a few.

Loss and MS go hand in hand; it’s the endless chipping away of the everyday things, every single day.

Things like swapping glorious Italian-made heeled boots for sensible flats.

Or holding onto a wall in the morning, rather than a handsome peep who doesn’t mind if you eat croissants in bed.

Mind you, I’ve gained a lot too – several stone in weight, a tent-like wardrobe and an unhealthy obsession with weekend newspaper catalogues. Who knew I needed a telescopic thingie for clearing out my drains? I’ll have two. Just in case.

So now I want to focus on positive losses and I started a list:

  • Lose the googling habit – latest being the ‘black holes’ I have in my MRI. Way too many scientific papers to wade through. They’re black holes, and could possibly add interest to my dating profile, aka, ‘divorced, have one Teenager, a weird cat and a good few black holes in my brain (smiley face).’

 

  • Lose the weight. Readers, I have not had rice, potatoes, sugar or processed food for four weeks now. Surely I should’ve been rewarded with a loss? Maybe one stone, give or take? More like one pound. But a loss is a loss. (p.s. how to weigh up the loss of comfort carbs against a one pound weigh loss? Still working on it).

 

  • Lose the hernia, otherwise known as ‘Phyllis’. She’s growing daily and my lovely MS nurses were suitably horrified at its size – grapefruit, going on a small melon. Fingers crossed, I will have an operation soon as well as a tummy tuck at the same time if I play my cards right.

 

  • Lose the doom and gloom attitude. Until the next time. Watch this space …
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The Shock Of The New(ish)

I remember a couple of years ago I was in London, along the South Bank.

It was a place I knew really well from when The Teenager was a baby; I’d walk for miles as he screamed for no reason.

I’d stop at the book stall where he was momentarily distracted by the endless rows of colourful paperbacks, having a coffee at the National Theatre (where he screamed some more), then crossing the bridge and walking past St. Paul’s before making my way home to Shepherd’s Bush.

A couple of years ago, I could barely make it onto the South Bank walkway from the hotel I was staying in. I was stunned and angry.

I had a similar experience yesterday. I’ve taken a taxi to hospital for several years now, despite living very near by. As the driver dropped me off right outside the main entrance, I remembered the days back in 2011/12 when I would park outside the hospital grounds and enjoy the walk.

There is no way I could do that now. When did that happen? Mixed up in having to take a taxi due to parking restrictions, I had lost something.

And it got worse.

From the main entrance to the MS nurse clinic, it was a long, long walk. It took me several stages. What happened? I had my stick, so that helped, as much as I didn’t want it to. There were metal benches dotted along the way and I sank into them and pretended to look at a letter or my phone (no reception).

I was truly stunned. I knew things were bad, just not this bad. My walk has always been wibbly-wobbly since MS. I grab things, hold onto any passer-by (never a single, eligible male, sadly), and bounce off the walls. But this was different.

Despite three courses of Alemtuzumab treatment, there is always that lurking thought that my MS hasn’t quite stabilised (although a lot more than it perhaps should have) but it is definitely getting worse.

Frankly, I’m scared. Is it a slippery slope or will it stabilise? Why does the base-line seem to drop continuously? Am I just getting older? Why does my MS still seem to be rapidly-evolving and highly active?

So many questions. The evenings are getting worse, with the nerve pain ramping up around 3pm. There are many evenings I regret getting rid of the telly in my bedroom.

If I could just sort out the pain in my legs, I’d be happy, but I’m already at the highest limit, 600mg a day of Pregabalin. Arms I can cope with – they simply don’t obey, and I’m used to that.

It’s the legs. My freedom, my everything. I feel like a walking med student map, with all nerve channels coloured brightly and buzzing.

I used to think of MS as a see-saw – treatment, better, more treatment, better – but now it seems like one of those slides kids get stuck on. Good to start with, twig in the way, blip, bit more, then sliding to the bottom …

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