Tag Archives: stumbling

Going Round In Circles

circles When I’m experiencing them, I’m never quite sure if a sudden surge in MS symptoms is a relapse or not.

I only get the definitive answer when I wake up one morning (days, weeks, months after) and I just know it’s over – it’s kind of a retrospective thing.

Today, hallelujah, is one of those days. The murky fog has cleared, my energy is restored to its usual low level and the world seems a much brighter place. I look back over the last couple of weeks and realise just how awful things were.

To begin with, I ignored the numbness down my right side, the dodgy tingling hand, the weak arm. Then came the beyond-out-of-proportion tiredness and jelly-brain. As is usual with a relapse, my world shrank. I did the bare minimum and I did it badly. Work was a nightmare (Boss not happy) and when I got home I slept (Teenager not happy), woke up and barely moved from my sofa.

After that came the symptom that left me stunned – my body seemed to want to pull to the right, so walking in a straight line was a bit tricky. I ended up turning right an awful lot, so much so that I might as well have been walking in circles. I slammed into walls, fell with a thud into my washing machine and tripped down five stairs, ending up lying dazed on the floor, squished between the bottom stair and my bureau, finding a long-lost catnip ball in the process.

The most worrying episode was when I was in the shower the other day. Again, my body wanted to jerk to the right. Unfortunately this meant I fell out of the shower and cracked my head against the toilet. As I was lying there, I was ever so grateful I hadn’t knocked myself out as the thought of paramedics finding me naked on the floor, crying and trying to cover up with a single flannel was unbearable.

After counting the cobwebs on the ceiling and noting the gaps in the silicone seal around the shower screen, I staggered to my feet, put my dressing gown on and sulked on the sofa for the rest of the day. Again.

So it’s over, for now; I’m back to the baseline, which seems to rise with every relapse. Whereas before I fretted about every tiny symptom, diligently jotting them down in my ‘MS Symptom’ book (one from 2013 – ‘my nose seems to itch more and swallowing is a bit of an issue’), I now have a much more ‘yeah, yeah’ attitude. It’s about accepting it and living day to day.

I can say that now. If you’d asked me last week however, I’d have given you a withering look and sighed.

Progress?

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Here We Go Again …

RelapseYou know how it starts, that ‘whoops, where’d my brain go?’ sensation.

That out-of-the-world feeling, the disconnection, along with the overwhelming fatigue, stumbling, mangled words, etc.

It must be Relapse Time.

MS has flicked through it’s malicious diary, thought, ‘hmm, let’s see, last one was in …. oh yes, February. I’m thinking August sounds about right. Bring it on and let the games begin’.

It started three days ago and I’m struggling to get the bare minimum done. And by bare minimum, I mean barely getting by with the minimum. The washing basket is overflowing, the paperwork is mounting up and I’m re-reading the same page of my novel over and over again. Some bright spark chose ‘A Suitable Boy’ by Vikram Seth for our next book club. 1500 pages. I may have to Wiki it.

On the other hand, The Teenager is having a fabulous time shouting out, ‘watch the wall!’, ‘d’oh, there goes another plate’ and ‘nah, don’t understand what you’re saying, soz, that’s not even a word, muvver.’

Luckily at work on Friday, there were loads of people on site, so I was able to sit in a corner pretending to look at complex building plans. Whenever anyone walked past, I whipped out a pencil and appeared to be calculating steel beams and floor boards. I got away with it. Back home, I stumbled to my sofa, collapsed and lay there for three hours.

I physically couldn’t get up. I wanted to, I needed to get stuff done, make dinner, appear normal, be a mum. I simply couldn’t. The Teenager came downstairs, modelling his newest t-shirt. I cocked an eye open, told him how lovely it was and apologised. What more could I do?

The next day, I woke up, yawned, went out for the essentials, yawned, came back home and went back to sleep. When I woke, I yawned and thought about going back to sleep. I stumbled to the kitchen, yawning, dropped a plate (this one bounced) then back to the sofa. And repeat.

The only ‘good’ (and I hesitate to use that word) thing about a relapse is that it concentrates the mind right down to the base level. If you can just drag yourself through the day, that’s an achievement. Nothing else matters. All the stress of the last few weeks means nothing when you’re gripping bannisters and falling over in the kitchen.

The aim is to get through this as quickly as possible, to yank my brain back from it’s wanderings. To rein in all the physical symptoms so that they’re more manageable. In short, to become me again.

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So MS Isn’t Painful?

MS painThere’s a misconception that MS is somehow pain-free and more of an irritant than anything else.

You know, the stumbling, the dodgy memory, the heat intolerance, the fatigue. In the grand scheme of things, not a bad little illness to have, right?

Wrong.

Sure, we can ‘laugh’ at the stumbling walk, until we trip down the stairs or fall over the in the shower, still clutching our Herbal Essence. We can put up with the joshing about our forgetfulness and fondness for post-it notes. As for the fatigue, well that’s just downright cushy of course. But pain?

Well, over the last month or so I’ve been in a lot of pain. First up was the heat intolerance. People will tell you it’s perfectly simple – just stay out of the sun, pop a hat on and drink lots of water. Why didn’t I think of that? If it were that easy, I would stay in a shady corner until the Christmas goods start appearing in the supermarkets.

So, the heat made me wilt. It pulled the plug on my energy, which was bad enough, but it then began to bring up intense itching, which to my horror, turned into a grotesque rash of blisters. To cut a long story short, after steroids and jumbo-sized bottles of grotty cream, it’s under control but I’m now left with ugly scarring all over my arms. And they still itch at the merest hint of sun, even through clothing. The boss has moved on from nicknaming me Half Shift to Apocalypse Zombie.

So far so bad but worse was to come. I’ve always had neuropathic pain in my legs, feet and arms and my dose of Pregabilin has been steadily increased to cope with it but over the last two weeks it morphed into something truly evil.

Take yesterday. I had a good day at work, got home, sorted The Teenager out (he’s on exam study leave, aka, doss around in bed all day eating toast), and put out the rubbish. Then blam, a whoosh of extreme nerve pain. I lay on the sofa whimpering and it rendered me useless. I tried to lie still, but the pain kept coming in hideous waves, along with intermittent violent twitching in my legs.

Sleep seemed the only answer so I set my alarm and tried to doze off. Only to be awoken by The Teenager crashing downstairs looking for the vacuum cleaner (he’s quite unfamiliar with it). Of course, after being holed up in his room all day, he wants to clean it at 8pm. He bashed every skirting board with the vacuum, sang (badly) at the top of his voice and chatted shouted to his friends on the X-Box before rushing back downstairs to make some toast.

So the next person who tells me I’ve got off lightly with MS, please excuse me while I trip you up and poke you with a cattle prod.

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Wardrobe Malfunction

Bella EmbergSo the great news is I’ve been shortlisted for an MS Society Award and the ceremony will be held at The Dorchester in October.

The bad news is the ceremony will be held at The Dorchester in October. October! Four weeks today to be precise.

I have been googling ‘Drop A Tonne of Weight in 28 Days’, but short of swallowing a tapeworm, I’ve resigned myself to looking more like Bella Emberg from the Roly Polys (see left) than Cara Delevingne’s frumpy cousin.

Steroids, fatigue and a complete sense of inertia have conspired to pack on the weight over the last two years. I hold my hands up (hang on, let me just put my Cheezy Puffs down), it’s my fault too. When your whole world is falling apart, what’s a box or two of Maltesers going to add to it? And that lovely creamy Greek yoghurt with added honey just sweetens the bitter pill.

The phrase ‘I have nothing to wear’ has never been more apt. Problem number one – flat shoes – how to look suitably glamorous in them? Even if I could squeeze myself into a beguiling little cocktail number, surely the effect would be ruined without even a tiny heel?

A friend helpfully suggested I should forget all about wearing a dress and choose a smart trouser suit instead. And invest in a head-to-toe Spanx bodysuit. And have one of those miracle weight-loss treatments three hours before, where you get wrapped up in clingfilm and covered in towels. Hmm. I would quite possibly faint from MS heat intolerance and spend the ceremony lying comatose across three chairs in the nearest A&E.

Problem number two – how to look glam in a trouser suit without looking like I’m going to a job interview? Problem number three – how to not stumble/drop food down myself/smash a glass during the event. Do you think they’d mind if I took one of my plastic wine glasses along? And a bib?

You can see why I’m a bit worried. And not only that, when I asked The Teenager what he’d be wearing, he mumbled, ‘hoodie, innit, but don’t stress, I’ll wear my smart trainers’. Ye gods.

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Like, Really?

stupid high heelsBless her diamond-encrusted heart. Shortly before her £7 million wedding, Tamara Ecclestone was sent five pairs of designer flat shoes by InStyle magazine – totaling £2040 – and ‘challenged’ (yes, they used that verb) to hang up her heels and spend a week in flats. Like, OMG.

Tamara informs us that she has hundreds of pairs of heels. Well, of course. She confesses that when the box of flats arrived, ‘I was worried; to be honest, my heart sank…they kind of offend me.’ Flat shoes offend her? Oh, to face Tamara’s totes tragic challenges.

But for the sake of the article and no doubt the hefty fee and the chance to promote her new beauty line available exclusively at Harvey Nichols, she bravely found a pair she could tolerate and went to dinner. Sadly, she ‘felt really unglamorous and I think people were probably shocked to see me not in heels.’ Tamara lasted just two days, claiming ‘the shoes didn’t make me feel good…I’m definitely not going to buy any.’  Ok then.

Sharing the same article, I was expecting more of Dawn O’Porter, the TV presenter and author who was flogging her new book, yours for only £7.99. However, she went to a business meeting in flats ‘looking like an embarrassing auntie. I felt ridiculous. The meeting didn’t go well.’ Because of a pair of flats?! What planet, etc, etc.

She rose to the challenge though, and soldiered on, despite cheating by wearing a pair of Marc Jacobs heels on a night out with her husband. The next day she had dinner with her girlfriends, in, gasp, a pair of flats, and splutters, ‘I felt like Nora Batty.’ One of her friends gleefully told her she looked like her gran.

What can we possibly take away from this insightful piece of investigative journalism? That wearing flats somehow morphs previously vibrant personalities into embarrassing aunties, grans or Nora Batty? Do these outgoing women really need a pair of heels to feel normal? I fear their psyches are more fragile than they would have us believe.

Anyway, before you chuck the flats in the bin, girls, send them my way. I’m a proud member of the Flat Shoe Club (TM) and we didn’t really want you as members anyway. So there. I’m also proud to be an embarrassing auntie and am more than happy to be stumbling in flats….

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