Tag Archives: multiple sclerosis

Jun 03 2017
6 Comments
Symptoms and Treatment

You Won’t Know If I Don’t Tell You …

BBCI took part in filming for BBC Wales last week.

I’d responded to their question, ‘What Would You Do If You Were Prime Minister?’, as part of their #MyManifesto2017 campaign. How could I resist?

They contacted me, we set up a date and they popped into the office for a chat, cameras in tow.

We discussed a whole range of issues, including disability rights, discrimination, PIP and benefit cuts.

One issue that came up again and again was describing MS at its worst. Having come out of an epic relapse, my longest ever (February to May), it was surprisingly hard to convey just why I looked so weirdly happy and brimming with optimism.

Between takes, I thought about this. Leaving a relapse is like being let out of jail. You’re handed back everything you signed over when you entered this awful state; perhaps not a watch and wallet in a plastic bag, but your innate energy, curiosity, vibrancy.

I found myself constantly saying, ‘no one sees me at my worst’. And you know, they don’t. As the only adult in my household, I shield The Teenager from the majority of a relapse’s effects. I can also work from home, alone. Or in the office, alone. During my endless days off work, I kept myself to myself. Most people were surprised to hear I’d even been through a relapse. It’s because they don’t see me. And I don’t tell them.

Pride? Obstinacy? Or am I just becoming a brilliant MS actress? I’ve had a few emails from you guys saying you know I’m not doing great as I haven’t blogged so much. Absolutely spot on.

I really don’t know why I lock myself away. I do know that one of a relapse’s effects is survival – you just have to get through it, so you put your head down, grit your teeth and keep on keeping on, as much as possible. This doesn’t leave much room for societal niceties – I don’t tend to have friends over, I don’t meet up with friends (my Excuse Bank is extensive) and I don’t do anything except putting what’s left of my diminished energy into getting through a horrendous time, with no idea how long it will last.

Relapses are reflective – you only know how bad they are when you start coming out of one. Part of me wishes the BBC could film me during a relapse but I also know that I wouldn’t have picked up my phone and sent that initial tweet if I was still in Deepest Darkest Relapse Dungeon.

So hopefully I can harness my rising energy levels for something positive. My short film will go live next week, on the telly, radio and internet (I know! Me – in all my glory), and they said they will Photoshop me down to a size 8 and make my chubby cheeks a bit more pointy. (I fear they are joking … )

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May 20 2017
12 Comments
Emotions

What’s Five Years Between Friends?

fiveWhen I was a kid, five years was the difference between mittens with a string through both sleeves and a proper pair of gloves to make snowballs with stones in them (I grew up in Scotland, natch).

Or being in Primary School and Secondary, where you got your head flushed down the toilet on a daily basis.

Five years is huge. Massive. Like, really big.

Now, on the cusp of my five year MS-Versary, it feels … weird. I don’t feel that much older or more informed. I still tug those metaphorical mittens, making sure they’re safely attached.

Perhaps with an illness like MS, with so many new medicines and numerous medical trials, we struggle to find out exactly where we fit in the MS Scale, Bad to Worse.

I remember clearly the night before My Diagnosis. It was Make Or Break. I was going to present my neurologist with every last scrap of evidence (carefully assembled in my MS Notebook of ‘Most Notable and Curious Symptoms’). I was fully armed. After ten months of wandering in the wilderness, experiencing relapse after relapse, I was ready.

As it was, that same neurologist peered at my brain on his computer and said, ‘yes, MS’.

I was stunned, hugged my MS nurse for a very long time, clutched the leaflets she gave me, went downstairs and bought a Boots Meal Deal for lunch.

I went home. I cried. A lot.

Now, five years on. I’m much more savvy, sure. I’ve re-adapted a whole lot of things in my life. My main aim upon being diagnosed was to get my son in to University and I’m now mere months away. I’ve almost done it.

However, he’s no longer fooled with my Sofa Command Centre. It scares him when I sleep a lot and I don’t blame him. This last relapse has been a cruel trial at one of the most important junctions of his life.

But I’m still here.

I’m sanguine now, I think. I hope. Life is easier now I have accepted how much more difficult it is. Which sounds strange, I know. Last week, I thought my epic relapse was over and then, blam, I fell asleep twice in one day. First time was on a site visit. I was in the van, which was a bit awkward -the boss woke me up strapping soil pipes to the roof and I thought I was being attacked by vampire snakes.

I’ve taken to working in our new office, which is lovely as I have coffee on tap and I can play music on the Mac. I create colourful charts and add up scary figures for the boss.

Ultimately, this MS-Versary will be understated. Long gone are the days of my Pity Party For One. I don’t rant and rave. I don’t rail against the injustice. I will only put up one banner, and have two or three party poppers.

I will reflect. On what it is to be human. We will all get sick. Just some of us sooner than others, natch?

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May 10 2017
10 Comments
Media

You Don’t Matter …

marchThere are 13 million disabled people in the UK, with 89% of them eligible to vote in the upcoming General Election.

13 million.

Have you heard any of the political parties address us and our needs directly during the election campaign?

Have you been overwhelmed with election promises about rolling back the savage cuts and stigma we have faced since the recession began way back in 2008?

Of course you haven’t. We don’t matter. Our purpose is purely as a scapegoat – when the chips are down, blame the people least likely to be able to fight back. It’s cheap but brutally effective. According to the tabloid newspapers, we all drive top-of-the-range free cars, doss around at home, unwilling to work and more than happy to leech off the state.

Yet this election is central to our future and we need to make our voices heard. A few facts:

  • 1 in 5 disabled people struggle to pay for food.
  • 1 in 6 wear a coat indoors as they are unable to afford heating.
  • The number of physically disabled people deemed homeless has increased almost 50% between 2010 and 2016.
  • Motability cars are being removed from disabled people at the rate of 700 a week – or 35,000 a year – due to reassessment from DLA to PIP.
  • 85% of people with MS will be unemployed within 10 years of diagnosis.

If I hear (No Saint) Theresa May appeal once more to ‘ordinary hard-working people’, I will scream. What is ordinary? Normal? What if I’m disabled and still work hard? Well, Theresa, I guess that makes me extraordinary, given the almost insurmountable barriers in my way.

At the last general election, I cornered one of our MP-hopefuls in the street as he was campaigning. I politely asked him what he was going to do about the disabled parking abuses rife in this area. He couldn’t get away quick enough. It’s a non-problem. I challenged someone who had parked, without a blue badge, in a supermarket car park on Monday at around 8am. His reply? ‘Disabled people don’t get up early, what’s your problem? Now **** off’.

It seems we face a battle on two fronts – being ignored by all the main political parties and the increasing hostility by the general public (whipped up to almost hysterical levels by the media, owned by billionaire political party donors).

I despair. Frankly, I’m worried.

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May 02 2017
6 Comments
My Ramblings

I’m A Finalist …

tubeWho would have thought one little line in a blog post would lead to so much?

That’s what happened when I mentioned in passing that I had been refused a taxi at Carmarthen train station, on my way to a meeting (it was a short fare, I offered a decent trip but he didn’t want to lose his place in the queue – of three taxis …)

My post was actually about The Teenager and whether he (and the cat) would survive me being away for one night.

The media picked up on it and long story short, I won the case against the taxi driver, after enduring a gruelling grilling from the Licensing Committee (the driver denied the altercation ever took place – CCTV proved otherwise). It was uncomfortable to say the least and I asked for him not to be punished unduly (this was Christmas, a prime season for taxis). All I wanted was a little more awareness.

I spoke on the radio, appeared in news articles and was filmed at home during a relapse – hence my stunned, pale face. Not helped by the fact that I was wearing a white blouse.

Anyway, I am now a finalist for the MS Awards, in the Campaigner category, and a big thank you to whoever nominated me. I’m due to go to London on Thursday evening, ready for the ceremony on Friday. However, I’m a little wary as, well, um, I’m big. Huge.

I ordered a bunch of clothes off various outfits and split seams, cried and stamped my foot.

I sent them all back.

I ordered more, and miracle of miracles, one of them actually fits me. The size will remain a closely-guarded secret. And so it is, I will be all in black – slimming, lol – mysterious, and, well, slimming, hopefully.

I met a friend for coffee this morning as I’m working from home, so can spread out the paperwork over the whole day. She bigged me up and told me to sail forth and go for it.

I will try my hardest. In the grand scheme of things (a phrase we say a lot in work), does it really matter? The best part of being there will be meeting everyone else – I’ve been to two other ceremonies (yup, I lost out twice before) and really, the people make it. There are so many inspiring, incredible and utterly gobsmackingly amazing people, it’s just a joy to be in their company.

So with that in mind, I will big myself up (lol), push my shoulders back and, um, sail? Does one sail after reaching a certain size?

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May 01 2017
8 Comments
My Ramblings

Perception Is Everything …

wombleHaving worked the entire bank holiday weekend, I’m shattered and filled to the brim with bricks/wood/steel beam measurements.

Not the best position with an MS-brain like mine.

During this relapse, The Boss has been picking me up and dropping me off for work as my legs go a bit wonky and my head is somewhere in the clouds.

Lovely. Not only do I save petrol, I also cleverly factor in Gumtree pick-ups, such as yesterday;

‘Um. Boss. Y’know years ago we did that job in that street opposite that car place?’

‘Oh, yeah? That was ages ago?’

‘Yeah, should we drive past? See if they did that thing we mentioned?’

He finally twigs. I come clean.

‘S’was on Gumtree. Same road. Free plant pots. Silly not to really?’

And so it was, I picked up loads of free plant pots  on my way home yesterday. Excellent. I had used my powers of innate perception.

I hate my routine at the moment – work, home, work, home. With a relapse, there’s no space left for anything remotely meaningful.

Except random free offers of plant pots. I spent a happy half hour scooping earth I’d bought two years ago into a free pot. There was a worm in every handful. But I was kind of happy.

Perception. I could look at it one way:

Tragic divorced single parent with an incurable neurological illness, nudging late early 40’s.

Or:

Exuberant, vibrant, independent 43 year old parent of an awesome Teenager, with an abundance of spirit … and MS’.

I mean me; I’m talking about the same person.

And that’s why I’m trying to re-frame my life – if I see myself one way, people react. The other way, people react. So, maybe I should shove all my sad-person preconceptions to one side and big myself up for once;

‘Fat MS womble, taking on the world?’

I’m embracing the F-Word at long last – Campath-Induced Grave’s Disease be damned …

p.s. this post derives from a random conversation with The Boss about the remote possibility of me venturing in to the dating world again …

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