Tag Archives: multiple sclerosis

If You Were Still Here …

dadFather’s Day has always been difficult for me.

Dad died aged 35 a couple of months before my 5th birthday, from complications arising from his MS.

I don’t have clear memories of him, just a few snapshots in my mind, but I do remember the day he died.

I waved him off to heaven from a window, still wondering whether the bottle of medicine I had dropped by accident had anything to do with him leaving. I remember feeling desperate rage at whoever had taken him and wouldn’t give him back.

As I grew up, the concept of MS receded into the background; I simply regarded it as an illness  that could make people end up in wheelchairs, like my dad. I studied photographs of him, tracing his life from bright-eyed optimism to darker ones of him slumped in his chair. The difference was shocking and incomprehensible. I filed MS away in my mind.

Every year throughout primary school, the week leading up to Father’s Day was torturous. I would have to tell the teacher I couldn’t make the card, the gift. I was given other projects to do, seething with envy as my classmates spent hours chatting about their dads while they cut out bits of coloured paper.

One year, we had to draw a picture of our family. I don’t know why but I had a sense of overwhelming shame that I couldn’t put my dad at the beginning of the line of people. Instead, I drew my brother standing on a large rock, followed by my mum and then us, in the hope that as the teacher glanced at is, she would assume the figure was my dad.

Throughout my angst-ridden teenage years, my outrage against the whole world at the loss of my dad led me to backpack to Norway for six weeks after my GCSE’s in a bid to trace one line of my dad’s origins. It would take another six years before I accomplished this, but during that trip I felt more connected to my dad than ever before.

As I got older and life opened up, it was the major events that I missed him the most – my wedding day, when I gave birth to his grandchild. I couldn’t help but wonder what he would say, would he be proud of me, what would he look like.

And then, MS happened. I was 37. Suddenly, I needed him more than ever. He would be the only person who would completely understand the confusion, the anger and the fear. I hated him and I loved him. I hated him for not being here and I loved him more as I now had an inkling of what he had gone through.

I felt incredible, overpowering sadness that he was born a few decades too early to have access to the treatment I now have. There were no MS nurses, no DMT’s and no real understanding of this illness. It was termed ‘creeping paralysis’ when he was diagnosed back in 1970.

From the stories I hear, my dad was a determined and wilful person, with a vibrant and somewhat unconventional personality. If he was still here, I would love for him to be proud of me and how I live my life despite MS.

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OMG … MRI …

mriI had an MRI scan today to throw some light on my recent relapse.

I know the score now – I leave the watch and earrings at home, wear a sports bra (no metal clips), don a tatty old cashmere sweater (usually freezing in the tube) and took my best friend (where would I be without her?).

At the hospital, I mainlined caffeine before we made our way to the clinic.

Once there, I answered all the questions, disclosed my weight (state secret), confirmed I wasn’t pregnant (hah!), accepted the ear-plugs and laid down, squeezing my eyes tightly shut.

Ho hum. I was whooshed into the tube and had that momentary burst of panic, which I knew if I let it grow, would condemn me to squeezing the emergency button and calling a halt to the whole thing. Claustrophobia + MRI = gritted teeth and the promise of looking round the hospital gift shops if I make it through.

After a while of zoning out, working out a shopping list in my mind, I was slid back out and injected with a dye to light up any active lesions in my brain. Then I was popped back in again. More banging sounds, which I attempted to ignore and concentrate on whether I needed one or two courgettes and had I run out of loo roll?

I was slid back out yet again, fully baked, and rolled off the plastic tray I’d been lying on, relieved it was all over. Except it wasn’t. Someone lifted a huge plastic square over to me, like a massive head brace thing with bolt bits on it. A different head rest was put in to place. Ah, they were preparing for the next patient?

Nope. For the first time ever, my neck was to have it’s very own special MRI. It was terrifying. My head was locked in to place, like some Medieval form of torture and I was slid yet again back in to the tube.

This time it was even weirder. Far from being cold, I felt as if I was being cooked. The heat blossomed all around me and then a pressure started on my head, like a gentle crushing, but crushing nonetheless. Hmm. The panic took root and I frantically tried to recall the courgettes. Three?

Over the intercom, I dimly heard ‘only two more scans to go’, listening to a brand new MRI theme tune. I swear it sounded like some bloke saying, ‘dah, dah, dah’ to a backbeat of drums.

Finally, eventually, I was slid out for the final time. I was shaking as I popped the earplugs in the bin and fell against the wall as I tried to put my boots back on. I staggered back to my friend, went to the loo (pesky coffee) and set off for the shops.

My heart was beating so fast, I couldn’t decide whether to buy a coaster with ‘Live, Love, Laugh!’ on it or a pencil with a tiny windmill topper. I went home, images of courgettes following me like a teasing hallucination.

I hate courgettes.

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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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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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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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