Tag Archives: balance

May 14 2019
8 Comments
Symptoms and Treatment

A Wrestler in the MS Ring

The last seven days have been interesting, if nothing else.

Each day brought a flare-up of existing MS symptoms; one day blinding fatigue (hit by an anvil), the next Bambi legs.

Then there were the dodgy hands (hello smashed crockery), the stumbling, the teeth-gnashing nerve pain, the upside-down balance issues.

As I normally do when this happens, I retreat home, batten down the hatches and conduct life from my sofa and my bed. It’s taken years of practise and I think I now have it down to a fine art. Even the cat knows what’s expected from her. She has a chair opposite my bed (with a special blanket on it) and keeps a beady eye on me and also dominates the sofa opposite mine (much to The Teenager’s chagrin when he’s home).

MS is a boxing opponent who just won’t give up. They might leave the ring for a little while, to grab an energy drink or something, ready for the next bout, then they’re striding towards you once more, when you’ve barely made it back on your feet.

And the worst thing about this? Every single one of my symptoms are virtually invisible to all but the people closest to me. If I have to explain nerve pain and fatigue one more time, I’ll scream. And if someone says, ‘but you looks so well’, I’m half-tempted to say, ‘yeah, bit fat, got MS’ and see if they shuffle away.

MS is a very lonely illness. Of course, I live alone, but still. It shoves you into the deepest, darkest corners of real life. I had to cancel meeting a friend yesterday and I was devastated. I schlepped around the house, slept three times and listened to life going on outside my window.

So, I went to work today. I know I’m lucky, working with my best friend. He picks me up in the van, coffee ready in the cup-holder. He takes me shopping and on errands. At work, he made me take ‘cool breaks’. We had a laugh and it felt wonderful to be out and about, engaging in real life, despite my legs crawling with pain. For a short while, MS didn’t matter.

I get knocked down and I get back up again as the song goes and MS truly feels like that. Each day is shaped around MS and I could let it dominate or I can work with it to make it work for me. It’s amazing what you can get done from a sofa before nodding off to sleep yet again.

There may come a time when the balance tips, I know that. But until then, I’ll take the blows and get back up again.

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Nov 16 2016
2 Comments
Work and Studying

What Lies Beneath

hardhatI’m becoming increasingly aware that I’m not really getting away with it at work.

And there was me thinking it would be the dead giveaways – the tripping over every single thing, the fatigue, the balance.

No.

It’s being ‘too well’.

MS, eh?  – you’re never too ill nor too well, eh?

I’ll explain: over the last four years, I have calibrated (shackled) myself to MS – so I now obey MS like a good servant and go to bed early, wake up early (in the dark) and more often than not, fall asleep on my sofa after work. That’s how I deal with the clinical fatigue and nerve pain. And it kills me, I hate it. But …

… luckily, I work for someone, The Boss, who also starts early. Result! Or so you would think. I truck up at 7am, yawning, the first person there, and catch up on a little light University reading. The Boss arrives, we chat over coffee, day begins. I then finish at 2pm.

And that’s the problem.

Honestly, I don’t mind being called ‘Half-Shift’. I can take the jokes, the swearing, the rib-nudging.

As the lone female in amongst upwards of seven blokes, I think I can roll with the punches and to be fair, I’ve developed a thick skin, which can only help me in the dating scene, no? Every cloud.

Plus I can speak knowledgeably upon many subjects, including drainage, tracking down antique architrave and where to source the best windows this side of the M4.

But, because I can hold my own, the shouts of ‘Oyyyyyyy-oyyyy Half-Shiiiiiiiift’ when I leave at 2pm are growing ever louder. And I’m not happy.

What they don’t realise is:

a) I earn less than them

b) Having to lie on the sofa for hours on end is not, NOT, a cushy life

c) I would give anything to have a normal job. One where I didn’t have a pink hard hat

So, yes, my co-workers have a laugh at my expense. And you know, no matter how hard I try to explain, they don’t understand. I’m not saying I want a ‘softly-softly’ approach, far from it. I’m made of far tougher stuff.

But, a wee bit of understanding wouldn’t go amiss? And what they don’t see is:

  • The ridiculous nerve pain
  • The twerking/twitching in my head and arms
  • The dead feet
  • The garbled speech (I cover this well – I’m Glaswegian!)
  • The utter soul-destroying fatigue
  • The endless days I have to take off work to recover from a spike in symptoms

I just wish, for once, they would be chuffed to see a peep with MS, still working, still trucking along. Despite everything. Rock and hard place …

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Dec 11 2015
4 Comments
Symptoms and Treatment

Give and Take

backflipIf I could do backflips and turn cartwheels, I would.

For the first time in over four years, I have zero nerve pain in my legs. It’s nothing short of a miracle.

Yesterday, after consultation with my MS nurse and GP, I doubled my dose of Pregabalin. Within hours my legs felt, well, normal. I prodded them, stood up, sat down, walked across the room.

Ah. Of course. As with anything MS-related, it gives with one hand and takes with the other. Sure, I could feel my legs, but my balance was shot. I staggered around the kitchen, unaware The Teenager had snuck up behind me for a fridge-rummage.

‘Wha’s up with you, muv?’

‘S’alrigh’. Meds. Strange.’

‘You’re talking funny.’

‘Yar.’

‘Can I have a tenner for the cinema tomorrow?’

‘Erm, yesh.’

I was slurring my words. My head was spinning and I felt drugged. The Teenager found the last yoghurt I’d been hiding behind the jam and wandered off, tutting.

I flopped onto the sofa, polished off the chocolate Buttons and tried to think. Pregabalin is also prescribed for Generalised Anxiety Disorder as well as neuropathic pain, so I guess that’s where the drugged, cotton-wool-brain feeling came from. It can also affect balance and speech. Excellent.

I weighed up the pros and cons. The nerve pain is manageable during the day, excruciating at night. I’ve spent hours whimpering on the sofa in agony, unable to concentrate on anything. Whole evenings have been wasted. Could I swap this for a spaced-out feeling? Would I trip more than usual?

I’m going to give it a go.

The pain in my legs has defined my life too much and is a constant MS-memento. Unfortunately I still have the numbness in my feet, so the foot-drop is here to stay and sometimes I can’t feel my feet at all, although the pavements are there to remind me as I trip over yet again.

So for now, I will ricochet around the house, falling over the rugs and the cat, but I won’t mind so much as my head will be floating around somewhere else. I haven’t been outside yet – I’m about to get ready to take The Teenager to town for lunch.

Should be interesting?

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Mar 21 2013
10 Comments
Daily Life

Make Mine A Large One

With pleasure comes pain. The bacon butties and biscuits I have happily munched on since working for the builder have wreaked havoc on my figure, my muffin top morphing from a skinny raspberry into a full-blown, full-fat double chocolate chip with whipped cream on the side.

I had to face the awful reality that it was time for one of the most humiliating and sad events in any woman’s life.

Nope, I wasn’t going to join a slimming club, I was going jeans shopping. Guaranteed to strike fear into the heart, I was going to be very brave and thank my lucky stars that communal changing-rooms had been outlawed in the 1990’s, along with shoulder pads, dodgy perms and ra-ra skirts.

And so I found myself wandering around shops where the sales assistants were young, hip and terrifyingly thin, showcasing the latest hot-off-the press fashion looks. I furtively flicked through the rails, depressingly starting at the back where the larger sizes huddled in shame. A quick glance round and I shoved a couple of pairs over my arm, cleverly tucking the size labels inwards.

Off to the changing room where a tiny sylph-like creature smirked as she slowly counted my items, handed me a plastic disc and waved me off to a cubicle towards the back. Half an hour later, I was red-faced, exhausted and depressed. Whoever said skinny jeans suit everyone clearly lied.

My MS balance (or lack of it) turned trying on five pairs of jeans into a farce. One leg in and I was pinballing off the sides of the cubicle. Two legs in and I was jumping around like a demented person on a pogo-stick.

When I could finally stand still, I was lucky enough to see my sorry figure from numerous angles, many of which I had never seen before, thanks to the eight different mirrors. I really do need to pick up that kettlebell for longer than three minutes at a time.

I found a pair I could live with, handed it over at the cash desk, not fooling the girl at all when I announced, ‘Oh, I’m sure my friend will love these!’ I left the store, turned a sharp right and headed for sanctuary. A coffee shop, where I ordered a large latte with an extra shot and the biggest muffin I could find…

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Jan 24 2013
15 Comments
Daily Life

Fun In The Bathroom

The snowpocalypse has meant I have spent an awful lot of time at home, which has given me an awful lot of time to stare at the mould creeping along my bathroom walls. Finally, I have had enough.

In the old days, pre-MS, I could paint the bathroom in half a day, whizzing around barely stopping for a breather. This time, I will need to approach the project with caution, precision and a battle plan.

So, the other day, I began. After trudging up to the doctor’s for my blood test, I trudged back to the paint shop. I had done my research, and I knew I needed an anti-mould solution, an interior seal damp and finally, paint, so I asked the guy for help finding them.

‘But why do you need all that stuff?’ he asked. Well, the bathroom is exploding with mould, it’s horrible. ‘It can’t be that bad, surely, how old is your house?’ Oh dear. Obviously women shouldn’t know anything about painting or preparing surfaces, yada yada yada. I gave him my best steely look, gritted my teeth and informed him the house is 160 years old, the window sills are over a foot thick and if the damp has gone in that far, I’ve got a serious problem.

He gave in, but got the last laugh, thrusting a couple of paint brochures into my hand before I left, saying ‘here, take these, they’ve got some lovely pretty colours in there.’ I stomped home in  a mood. I don’t care if I paint the bathroom in ‘ocean ripple’, ‘chic shadow’ or ‘urban obsession’, as long as it gets done. If I had my way, I’d paint it all black so I’d never have to see the mould again.

Anyway, I am all set to go, but nothing has been done. Three reasons: my arms get tingly and numb if I hold them up for too long, my balance won’t be the best on step-ladders and I worry about suddenly get tired half-way through.  The guy in the shop didn’t quite succeed in making me feel completely stupid and girly, but MS certainly has….

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