Jun 02 2018
4 Comments
The Teenager

Teendults – A Survival Guide

The Teenager is home for over three months now Uni has finished for the Summer break.

He sent me an extensive shopping list in advance – ‘lots of protein, fruit, veg, rice, protein bars, frozen fruit, milk, eggs, bit more protein’.

Just to be on the safe side, I added extra loo roll (he’s the Houdini of Andrex), more toothbrushes (he chews them), gallons of shower gel (he swims in the stuff) and some more protein.

If I’d thought about it, I should have sent a list back, something like this:

  • Take your key when you go out.
  • Change the loo roll when it’s empty (handy hint, there’s more next to the loo).
  • Take your key when you go out.
  • Turn the oven off after cooking your usual six salmon steaks.
  • Take your key when you go out.

And that’s pretty much it. The key issue is a biggie; he’s lost more keys than I can count, forgets to take it or just seems surprised to find it in his pocket after hammering on the door at 1am.

On one memorable occasion, I woke up to find his bed empty and my front garden littered with plastic bottles and newspapers. He’d forgotten his key and in his endearing wisdom, decided to chuck the contents of our recycling bag at my bedroom window in the hope of waking me up.

I eventually tracked him down to a friend’s sofa and had a little chat about the aerodynamics and weight of newspapers.

And so it was I took my friend for the journey and we picked up The Teenager plus all his worldly possessions and trekked back home. The cat rolled her eyes and scarpered, used to a more sedate pace of life in his absence.

It’s strange welcoming back an adult, after dropping off a boy at Uni last Autumn. We’re both adults now, yet somehow there’s the maternal temptation to revert to type.

I remind him to take his coat when it’s chilly. He reminds me he’s an adult. I press an apple into his hand before he goes out. He places it back in the fruit bowl. He’s not the only one rolling his eyes. And so it goes back and forth.

I think though, that we’re getting there. I’m getting used to him singing in the shower again; some days Beatles hits, others Oasis. The thumping as he gets dressed (no idea). The evidence of overnight fridge-foraging when I come downstairs in the morning (follow the crumbs to the empty packets).

Some things never change though. One evening last week, I resisted the temptation to ask if he had everything before he went out – key, wallet, fully-charged phone (hah!). I waved him off, feeling quite pleased with myself, and settled down to some serious Danish drama on telly.

A minute later, a knock on the door. The Teenager, looking sheepish.

‘Forgot my key’.

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May 27 2018
2 Comments
Symptoms and Treatment

Being Ill Is Fun and Other Myths …

The Boss has toothache.

Really, really, down-to-the-nerve toothache.

Excruciating.

We were chatting over coffee last week (with him wincing every time he took a sip, bless him) when he said something along the lines of:

‘You know what, I always thought it would be pretty cushy being ill. Lying on the sofa, binge-watching Netflix, eating sweets. But it’s nothing like I thought it would be.’

I haven’t been too well these last few weeks and it’s scared me; not being able to cook a proper meal, sleeping for so long every afternoon, shooting nerve pains. And that’s without the ever-growing hernia.

But he’s right. Before MS, probably like most workers, I thought a sick day was a euphemism for ‘duvet-day’. I’ve now learned the hard way that sick days are only fun when … you’re fairly healthy.

Real sick days are just that, sick days. You feel dreadful. You wake up tired, knock into everything, trip downstairs, and it’s all downhill from there.

Lying on the sofa isn’t safe, fun or secure when you realise that the only person keeping the whole show on the road is … YOU. There is no one to put the bins out, feed the cat, order shopping, clean, cook.

I’ve lost count of the times I have forfeited dinner, only to starve until The Boss picks me up in the morning with some kind of breakfast waiting for me.

As the only bill-payer in my household, the pressure to recover is immense, so there are no days in bed, no recovery time. It’s a case of getting over the worst and getting back to work.

Which I do, time and time again. Take yesterday: in the van on the way to work, I told The Boss that even though my right arm was numb, I would be fine. I ignored the shooting nerve pains and the general uncomfortable sensations in my fingers.

I got through the day with my left arm. It’s what you do, without that safety net.

The Boss will get his dental treatment. I will keep on taking my medication, and for the foreseeable future, two hour afternoon sleeps will be the norm.

A healthy sick day?

Yes, please.

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May 23 2018
6 Comments
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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May 15 2018
2 Comments
Emotions

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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May 10 2018
2 Comments
My Ramblings

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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