Category Archives: Emotions

The Best Worst Day of My Life

Six years ago on Friday 25th May, it’ll be my six year MS-versary.

Six!

It feels like yesterday. I vividly remember parking up a whole hour early, my car facing the huge hospital before me.

For some bizarre reason, I tried out a new lip-gloss as I waited, a freebie from a magazine I was probably too old for, my nerves shredded.

After an hour, I locked the car and made my way to the clinic where I flicked through a battered Argos catalogue. I was called through and in less than ten minutes I was diagnosed with a highly-active form of MS and offered two different treatments.

I left, dazed, spaced-out, stumbling, a sign of things to come. I stuffed the leaflets into my bag, sat in the car and exhaled, catching sight of that awful lip-gloss in the mirror. It truly was dreadful,  but at that point, I could’ve painted a clown face on and not worried about it.

No one wants to be diagnosed with MS, but after 10 months of endless relapses, I just needed an answer, and with that, access to vital treatment. In the interim, I was spinning around in a frightening world of anxiety and fear. My health was declining rapidly, I was confused and I was losing control of my life; partner left, sacked from work. Cat stuck by me.

In the car, I smiled. I would be treated. The medicine, no matter how brutal (and it was pretty harsh), would slow this all down. Give me some breathing space, allow me the energy to get The Teenager through High School, that he’d just started. The timing wasn’t great.

Six years on and three courses of Alemtuzumab treatment later – one more course than the usual two, thanks to a particularly active bunch of lesions – we’re still here and still doing well (or ‘calm‘, as The Teenager would say).

He’s wrapping up his first year at University and I’m doing … ok. Ish. It’s been an unimaginably steep learning curve, adapting to a life I’d imagined would be a couple of decades in the future. Slowing down, readjusting.

I sleep a lot and have the whole routine down to a tee – blanket, earplugs, zonk. I’m gone. I can quite literally say, I could sleep anywhere, anytime. And that’s before 8 hours at night.

I trip a lot. I fall over a lot. My hands are wonky and my feet don’t listen to me. And as for the nerve pain; that’s a whole different matter.

Six years on, I’m in a perpetual cycle of adapting, albeit on a downward path. Yet the more I go downwards, the more my mind struggles to stay afloat.

I push myself, then have a little nap.

I could count out my post-MS life in naps. But I would far rather count it out in successes. We’re still here, and we’re here for the long-term.

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The Gap In The Narrative

There’s an insightful documentary on Netflix, ‘End Game’, about end-of-life care. It’s a beautifully moving film and I highly recommend it.

One of the doctors explained that ‘suffering’ is the gap we experience between how our lives were and how they are now, and this hit a real chord with me. It’s all about acceptance, right?

Although he was talking about the End Game, it was a powerful and invigorating point.

We are diagnosed, we grieve, we accept.

We gather ourselves together and get on with life, however short it may be.

It sums up what I’ve been tussling and struggling with these last six years.

Simple?

Perhaps not.

All of us who are diagnosed with an incurable and degenerative illness face loss, and it’s incremental. We may not be at death’s door, but the loss is there and potent. We may have to accept our jobs are under threat, our partners lose patience, our friends drift away.

Should we accept that this has happened and if we don’t, are we still suffering? Perhaps:

  • I could have pressed my ex-employer for more compensation, but I chose not to stoop to their level.
  • I should have been worried when the government and the media started spewing out anti-disabled/benefits propaganda?

Suffering to acceptance is a very, very difficult journey for anyone to make, far less someone with an illness such as MS.

So, say we get through all that, as I hope I have. My son is fine, my MS is governable. Right, next stop, Acceptance?

I think this is only true at a micro level, which I think an illness such as MS thrives upon, for the good. MS brings us up short. We do smell the roses. We are normally young so have the chance to change our lives.

It may not be absolute acceptance, but it’s half-way there?

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Rage Against The Lesion

Lesions, eh?

Little white sinister blobs on our MRI’s, causing untold relapses and despair.

I had a spectacular first ‘proper’ relapse eight years ago and nothing – absolutely nothing – could prepare me for it.

A day trip; a long-planned stroll around shops, and a coffee with a dollop of cream on top with a generous slice of cake in Ye Olde Tea Shoppe afterwards.

The Teenager was away on a rare break, and even though I still had a packet of wet wipes and an emergency box of Lego-themed plasters in my handbag, I was … an adult … for the day.

Or so I thought.

It started on the way there. I couldn’t stop yawning and slumped in the passenger seat, answering my friend with a Danish accent.

We parked up, and I meandered the streets, weaving this way and that, feeling completely spaced out. I floated around with numb, unworking feet and arms, disconnected and, if I’m honest, beyond scared. I fell against walls and tripped over my feet.

I finally found the Ye Olde place we’d agreed to meet at and I sat down, terrified. Something was very, very wrong. The language difficulties increased, as did the sensation of not being of this planet (I know, not that unusual for me, but bear with).

Two days later, I was admitted to hospital with an (eventually diagnosed) unusual lesion on the speech part of my brain. I could have gone in earlier and stayed in for days, but The Teenager was due back within hours and that took complete  precedence over anything and everything. Within a year I had highly-active MS and treatment to match.

Fair play, The Teenager, even after all these years, still does a wicked Danish impression of me. I cannot begin to imagine the impression it left on him at such as young age.

So, lesions. Every day I wake up, I know exactly which ones will come forward and play up. Some are here to stay, the frayed cables permanently snapped – the foot drop, the balance. Some flare under fatigue – the language, the garbled speech, the cog fog. Sometimes they all get together and push me on to the sofa where I spend my days watching clouds drift past my window.

The one I hate the most is the sudden darkness and depression. It descends rapidly – I can be happy one moment and then in the pit of utter despair; I would rather speak with a Danish accent the rest of my life than go through it over and over and over again, a vindictive Groundhog Day I cannot escape from.

In short, it’s awful. It happened just two days ago. That sudden darkness. I’ve tried to learn to just relax in to it – I tell myself it will pass and I will be ok, but it’s so hard.

I know it’s MS and I know it’s a lesion. It’s just a blob asking for attention.

So I try to rage against the lesion. I know what’s happening. But it can take all my diminishing strength to see it pass back in to real life again.

But the bonus? I can still do a wicked Scandi-cop impression …

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Life Is Short

I spent ten minutes before work this morning planting some seeds that have been hanging around my house for years.

A set of three herbs, complete with three zinc pots and a tray you’re supposed to put on a sunny windowsill (if you don’t have a cat).

Ten minutes previously I’d been lying on my sofa, shattered, buzzing with nerve pain and with a weird flicking tremor in two of my fingers. The usual.

Today was different; it marked the 40th anniversary of my dad’s death from MS complications, at the age of 35.

I’m now 44 and wasn’t even properly diagnosed until I was 37.

Years and ages to one side, living with a chronic, progressive illness speeds life up. The questions and fears you once expected to face in your 60’s become more or less commonplace in your 20’s or 30’s.

The positive side to this is it makes you concentrate on what makes your life meaningful. The flip-side is terror and anxiety. The trick is to outweigh the fears with the joy. Easier said than done.

So today I wanted to make something grow. The herbs might not, but the hope is there and when The Boss picked me up for work, I was beaming from ear to ear despite sadness.

I can’t solve every problem with happy thoughts and actions and I don’t expect life to always look as beautiful as it did this morning. Life with MS is an endless round of awful symptoms I dampen down with medication and a fair sprinkling of Anglo-Saxon language.

Life is short but so are our memories. If anyone has ever broken an arm or a leg, I bet we can all remember thinking, ‘wow, I’ll never take you for granted again, dearest arm/leg’; But we do.

I hope my herbs will grow and they’ll give me a great excuse to make some pasta. And more than anything, I hope I can enjoy every day, no matter what MS, or life, throws at me.

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With Friends Like These …

A BBC journalist has himself been in the news recently.

He is disabled, and quite rightly needs to use a disabled parking space.

So far, so good and I read his article in a weekend newspaper with a keen interest.

Until, that is, he stated that he had never yet seen a disabled person park in them; they all looked non-disabled. To him.

I’ve done some research and his complaint is not new – Boris Johnson even wrote an article citing him and his parking issues back in 2011.

I’m interested in how he can ‘spot’ a disabled person and whether in fact they do, ‘bound(s) out, whistling, remote-locking (their cars) with a backwards squirt of electrons.’

I wonder if, in the interest of his being a journalist, he has ever used his unique position to question these blue badge ‘frauds’. Perhaps strike up a conversation with one of those ‘bounders’?

Apparently not. Which renders his views utterly subjective and not based in reality or fact.

I have every sympathy for this journalist. Of course, he needs the extra space for his wheelchair that a disabled space affords. And, of course, there are many people looking to park in the same spaces as they too are disabled.

Essentially, there are not enough disabled spaces, and therein lies the problem.

So to broadly sweep a dismissive brush over every person he has ever seen park in a disabled space as ‘not disabled’ is breathtakingly insulting.

The Invisible Disabilities Association defines invisible disability as:

‘… symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.’

Can this journalist see pain? Feel fatigue? Heat intolerance? All of which are valid MS symptoms, to mention just one illness that has invisible symptoms.

It’s hard enough being attacked by the Government through punishing benefits ‘reforms’ and not being at all represented in the last parliamentary election, even though 1 in 6 of us is disabled.

So to be attacked by ‘one of us’ (even though he clearly places himself above that) seems particularly harsh.

Aligning himself with the Blue Badge Disbelievers may gain him Brownie points and a few headlines, yet he does us all irreparable damage.

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