Author Archives: stumbling in flats

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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The More You Tell Us We Can’t, The More We Just Might

I don’t know how you guys are doing, but life under our present government is an anxiety-inducing experience of hell for me.

A weird, subversive world where right is wrong and wrong is worse, way worse than you could ever imagine.

And a world where MS is magically reversible because a former A&E nurse says so, after ‘observing’ you for half an hour.

MS. The illness they can’t even find a test for, far less a cure.

Cast your mind back to the last General Election – all those earnest politicians vying for your vote; the couple, the couple with 2.5 kids, the retired couple, the middle-aged couple. Where were you?

Did you once hear our leaders address the 1 in 5 of us who are disabled? I’m a media junkie and I didn’t hear a thing.

I heard about tax relief (I don’t earn enough), inheritance tax (I don’t have enough), and tax in general (I live at sub-poverty level). I heard about ‘hard-working’ families. About ‘hard-done-by-pensioners’.  Disabled people? Nope.

In fact, I was so annoyed, I responded to a BBC Wales tweet and ended up being interviewed, my absolute pet-hate, but the point had to be made. Not that it made much difference.

Our government was simply not listening to people with disabilities, Let’s be honest, few of us will get through life without some form of ‘disability’, so why be so shy about it?

Truth be told, we are simply not media-worthy, and the whole transition taking place from Disability Living Allowance to Personal Independence Payments is just another modern tragedy taking place in every single street up and down the country, but is under-reported on a terrible scale.

Want to know a secret?

Should you live long enough (and many, many illnesses are non-age-specific), you too will be disabled! Yep.

I am absolutely fed up with being ignored by politicians unless we are a good excuse for a photo-op. Some of us are in wheelchairs, some of us are not. Weirdly – we are all different.

Is it fair we have to fight just to get a taxi? Just to keep our job?

In my view, there has to be a backlash soon.

And it cannot come soon enough.

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How Little Is Too Much?

This blog will be six years old in October. Six!

When I first started firing out my random thoughts to the blogosphere, I knew I’d be buried in amongst the millions of other blogs out there.

I just wanted to write, get all the confusing thoughts down, in the small hope that someone, somewhere would understand.

I blogged anonymously, as I was experiencing horrendous workplace bullying due to my MS and had a feeling it would end up as a legal matter, which it did, after I was fired suddenly.

I took comfort in the cloak of anonymity, writing painfully honest posts about anything and everything as me and The Teenager adjusted to a whole new reality. And the reward was an incredible amount of support that flowed back to us. We chewed over problems, discussed different options through comments feedback and Twitter.

In short, my blog became a vital lifeline.

You guys saw me through Alemtuzumab treatment, three times. The subsequent thyroid problems. The weight gain. Adjusting to a more limited but still fun way of living. You generously shared your own experiences and advice about symptoms, getting through my studies, cheering me on all the way.

You also watched The Teenager grow up, which is particularly special to me – as someone once told me, ‘it takes a village to raise a child’, and despite being alone, your input saw both of us through some pretty turbulent times. Regular readers might still remember his School Uniform Protest.

Even though he’s now at University, he still asks me to post this photo or that comment on Twitter – he’s got a following all of his own and I know it means a lot to him.

The blog is now read in over 150 countries, the latest being Rwanda last week (hi!). I’m absolutely delighted. And when people buy my book and tell me it’s helped them through hard times, I grin for days. So many of you have emailed me directly and become firm friends.

Closer to home, and perhaps inevitably, now I blog under my real name, my rambling thoughts are now read by people I know. Which puts a whole different slant on things. It’s the same as leaving an open diary on the table.

Although my recent posts are still personal and open, I’m aware that I hold something back each time. I go so far, then stop. I’ve been mulling this over and over in my mind and am still unsure what to do.

Should I just not worry, go for it, life is short and ultimately, what the hell? Can you be held to account for what you feel? Or should I still temper what I write, creating more even-handed posts?

As always, I’d love your advice …

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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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