Tag Archives: nerve pain

The Shock Of The New(ish)

I remember a couple of years ago I was in London, along the South Bank.

It was a place I knew really well from when The Teenager was a baby; I’d walk for miles as he screamed for no reason.

I’d stop at the book stall where he was momentarily distracted by the endless rows of colourful paperbacks, having a coffee at the National Theatre (where he screamed some more), then crossing the bridge and walking past St. Paul’s before making my way home to Shepherd’s Bush.

A couple of years ago, I could barely make it onto the South Bank walkway from the hotel I was staying in. I was stunned and angry.

I had a similar experience yesterday. I’ve taken a taxi to hospital for several years now, despite living very near by. As the driver dropped me off right outside the main entrance, I remembered the days back in 2011/12 when I would park outside the hospital grounds and enjoy the walk.

There is no way I could do that now. When did that happen? Mixed up in having to take a taxi due to parking restrictions, I had lost something.

And it got worse.

From the main entrance to the MS nurse clinic, it was a long, long walk. It took me several stages. What happened? I had my stick, so that helped, as much as I didn’t want it to. There were metal benches dotted along the way and I sank into them and pretended to look at a letter or my phone (no reception).

I was truly stunned. I knew things were bad, just not this bad. My walk has always been wibbly-wobbly since MS. I grab things, hold onto any passer-by (never a single, eligible male, sadly), and bounce off the walls. But this was different.

Despite three courses of Alemtuzumab treatment, there is always that lurking thought that my MS hasn’t quite stabilised (although a lot more than it perhaps should have) but it is definitely getting worse.

Frankly, I’m scared. Is it a slippery slope or will it stabilise? Why does the base-line seem to drop continuously? Am I just getting older? Why does my MS still seem to be rapidly-evolving and highly active?

So many questions. The evenings are getting worse, with the nerve pain ramping up around 3pm. There are many evenings I regret getting rid of the telly in my bedroom.

If I could just sort out the pain in my legs, I’d be happy, but I’m already at the highest limit, 600mg a day of Pregabalin. Arms I can cope with – they simply don’t obey, and I’m used to that.

It’s the legs. My freedom, my everything. I feel like a walking med student map, with all nerve channels coloured brightly and buzzing.

I used to think of MS as a see-saw – treatment, better, more treatment, better – but now it seems like one of those slides kids get stuck on. Good to start with, twig in the way, blip, bit more, then sliding to the bottom …

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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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The Ugly Spectre Of MS

noThe Teenager collapsed last week.

As with most teenagers, he had his phone glued to his hand at the time and managed to text me in work:

‘can’t get off the floor, come and help me. I’m scared’.

I couldn’t get there straight away so sent others, who managed to pick him up off the floor.

By the time I arrived home, he was marooned in his bed, in pain and confused.

I took him to the GP and the chiropractor.

The evening before, we had been in A&E with extreme nerve pain. And were referred back to his GP.

Some tests were run.

He has been referred to a neurologist.

He mentioned a few symptoms that made my blood run cold.

He has been working out at the gym. That will be it?

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A Yuletide Pity Party

grinchI worked yesterday, although I’m sure The Boss wished I hadn’t.

I grinched and grumbled the whole day, threw an almighty strop over a designer radiator and sulked in the van while The Boss gamely measured up our new, muddy building site.

When I got home (after flouncing out the van and nearly breaking an ankle in the process), I collapsed on the sofa, before promptly falling asleep.

Nerve pain, usually kept under semi-strict control with medication, had sneaked past it and was having festive fun dancing with clogs on all over my body. Hard to describe and difficult to ignore, my body was inflamed with the darned pain. After I woke up, I lay still, wishing beyond hope that it would go away.

My stomach grumbled but I couldn’t get up. I passed a few hours like this, intermittently bursting into tears whenever a Christmas charity advert came on TV. The Teenager popped down a couple of times to ferret through the fridge and sneak a few mouthfuls of squirty cream (he denies it, but I know the sound).

Eventually I ate two mince pies without squirty cream, cried a little more and gave the cat some Dreamies before I went to bed. I slept a straight ten hours, virtually unheard of as late as I’ve also been plagued by the scariest, most bizarre nightmares. Anyway, I got up, fell on to the sofa and lay there pitying myself a bit more and watched the news about Storm Barbara (Really? Do you know how many jokes I’ve had?).

So I sulked about the storm’s name and the nerve pain cranking up again. I sulked about there being nothing on TV. I sulked when I found out The Teenager had demolished the rest of the mince pies. And then, A Christmas Miracle.

The Boss texted me. He was going to Ikea and would I like to join him? Well, I could just as easily sulk in Ikea as at home – and have more reason to – so I went. Best. Cure. Ever.

It was blissfully quiet, I got to stock up on candles and had a leisurely coffee while watching harassed parents attempt to control their over-excited toddlers. Been there, done that. Nerve pain? Still thrumming away, still painful, but with the company of a good friend and a change of scenery, just about manageable.

This lull allowed me to reflect on how lucky I am to have you guys to offload to, to grumble to and to feel part of a larger group of good mates. I love your comments and your emails and who knows what my fifth year of blogging will bring?

p.s. If I hear, ‘Barbara’s going to be very windy’ one more time, I’ll cry again …

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Standing Up For Sitting Down

sittingChristmas, I salute you.

It’s practically mandatory to sit down all day, watch old black and white films, gorge on chocolate and generally do not very much at all.

I love it.

Sadly though, I also have a short story (experimental and transgressive, gah) and a critical reflection piece to write.

Looking on the bright side however, it just means I get to sit down some more, only this time at my desk (after shoving the cat off the chair). Plus adequate supplies of chocolate and an old film playing in the background, the tv turned towards me.

Or that was the plan.

The Teenager has taken to his phone to communicate with me by text throughout the festivities and subsequent academic struggles:

‘I’m awake!!!’

‘Lovely dear. It’s 2pm’.

‘Mum?’

‘What?’

(Teenager sends through five screen shots of tops he wants to buy with his Christmas money)

‘Preference?’

‘I’m trying to write an essay’.

‘I like the red one. You?’

‘Very nice’.

‘Mum! What’s the best one? Is there toast in the house?’

‘The red one is nice. There’s bread in the freezer’.

‘Muum, muuuum, wanna make me toast? Because you wuv me? With honey? Jam if it’s easier?’

And so on and so on.

I’ve looked at all the study guides, and they recommend taking breaks after twenty or thirty minutes. So every half hour I sort out the laundry, organise the shopping list, vacuum, feed and play with the cat (I stupidly bought her a laser toy), dust, catch up on paperwork and sort out the recycling. Then I get back to the essay.

I suddenly have a wonderful idea, linking a little-known theory to my essay. I jot down notes, feel inspired, hover over the keyboard …’

A text.

I can’t help it. I look.

‘Have you seeeeen this?????’

(A short film or ‘gif’ of a rabbit doing a high-five, over and over again)

My wondrous literary thought (which could have changed the literary world) has disappeared, never to be retrieved. I save my paltry document and give in to the inevitable.

I resume my default On The Sofa position, controller handy, legs tucked up (MS nerve pain is a nightmare), bowl of chocolate within reach and a book at my side.

I scroll through my tv recordings. Ah. Aiden Turner, in an Agatha Christie locked-room mystery. Of course, I am compelled to watch it for, ahem, research. It’s based on a very, very famous novel.

I settle down.

Ping. Text.

‘Mum. Guess what?’

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