Aug 07 2018
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My Ramblings

Halfway There

Around my 25th birthday, I drank a whole lot of different-flavoured vodkas in a smart Polish restaurant in West London, feeling very sophisticated.

A few years previously I’d celebrated by necking vodka from the bottle on the roof of a small-town railway station somewhere in Poland, and I felt free and full of excitement about the wide-open future.

Now I’m approaching my 45th birthday, I will no doubt be tucked up in bed by 9pm with a glass of water on my bedside table and a lopsided party hat on my head.

But, looking at it positively, I’m (perhaps) still only halfway there? At 25, I was halfway to 50. Now I’m halfway to 90. Not a bad age and a decent one at which to bow out.

Casting a beady eye over the past, it’s easy for me to see this life as a series of fabulous adventures, terrible dead ends and a whole load of missed opportunities, like one of those infuriating tiny, plastic maze games we had as kids, with a little silver ball we had to angle and guide into its final slot.

So was MS a wake-up call despite its terrible ramifications?

Physically, yes. I transformed overnight from a somewhat harassed single-parent with a job that fitted around school hours to someone who was quite literally on the floor.

I was planning and studying for a path to career enhancement, once The Teenager was safely ensconced in high school and life would become a little easier.

Tiredness back then was a long day in work followed by all the child-centred tasks after work. And repeat.

I really, really didn’t know anything about tiredness.

Mentally, MS was akin to being punched in the gut, over and over again. But, like they say, when you’re in the gutter, you’re still looking up at the stars.

When you go back to zero, the only way is up.

I liked writing as a kid and thought there was nothing to lose by trying it again. Six years later, I’m about to start a PhD in Creative Writing. Weird, huh? And all thanks to me venting my MS frustrations all those years ago.

I’m no academic, just a person who is passionate about writing the truth. My studies will focus on the MS ‘it’s all in your mind’ scenario that happens to so many of us, including me.

‘Hysterical’?

That’s me.

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Aug 05 2018
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Daily Life

Life, Interrupted, For a Little Bit

It’s not much fun when you’re trying to get around with your insides spilling out, and I don’t mean through blogging.

This hernia is dominating everything at the moment and because of it, life is on hold. For a little bit. Hopefully.

I’m still working (in a wonky, stomach-clutching way), still running the house (just about) and still catching up with paperwork (me and the hernia get up early in the morning, best time of the day).

To most people I must look like the oldest pregnant woman they’ve ever seen, the hernia now taking on the appearance of a six-month bulge and still growing. I turn 45 the week after next and it’s getting plain embarrassing, especially when I’m accompanied by the Man Mountain, aka the very tall and muscle-rippled Teenager.

My summer wardrobe consists of jeans I can now fit, due to my low-carb eating but teamed with  big flowing tops, so that I look like a very fat, very pregnant woman who wobbles when she walks and trips over a lot. And wears tents.

Yup, MS hasn’t moved aside, in fact, it’s intensified. With the hernia situated right in the centre of my body, the neuropathic pain has increased ten-fold. I walk into walls a lot more and basically pinball around my house.

And as for the pain, I’m on the strongest painkillers my Doctor can give me and I look back wistfully at the gas and air I had when I actually was pregnant and about to give birth, never mind the epidural. Now, that would be utter bliss.

So, we muddle along, the hernia and me, the hernia (Phyllis – we’ve known each other so long now, she just has to have a name) always going first. Of course.

And it’s ever so slightly icky. I never knew anything about hernias until Phyllis took up residence and when I read up about it (thank you, Dr. Google), I was horrified. So it’s a delicate subject to bring up, especially when people ask me what it is. Eww.

I’m not seeing a consultant until the last day of August, after two urgent GP letters and a deadly committed MS nurse fighting my case. It’s anyone’s guess when the actual operation will be.

The only way I’m getting through this month before the appointment is to imagine myself without my melon-belly; I’ll be reborn, and I’m half-tempted to ask them to tummy-tuck me at the same time, seeing as they’ve kept me waiting so long, the meanies.

Plus, I’ll need to be off work for a couple of weeks, which will give me ample time to embark upon some University reading. Result.

Or binge-watch Jeremy Kyle and Homes Under the Hammer.

Probable result.

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Jul 22 2018
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Emotions

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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Jul 19 2018
6 Comments
Daily Life

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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Jul 15 2018
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Daily Life

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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