Tag Archives: fatigue

Safe Haven or Prison?

homeI had a very interesting chat about the early stages of my MS the other day.

One thing that cropped up again and again was how isolated I felt.

The foot-drop, the stumbling, the jaw-dropping fatigue – they all conspired to keep me at home.

I no longer socialised, preferring to invite my few remaining friends over to mine instead, where I could lounge on the sofa, safe in the knowledge that they wouldn’t judge me or the amount of tears I cried. Or how much cake I scoffed.

I went out far less and began to place internet shopping orders for everything – groceries, books, a radio, even a packet of batteries. My lovely squishy sofa became a hateful place where I spent hour after hour sleeping my life away.

My window was a torture instrument, displaying an endless reel of everything I was missing out on. My kitchen morphed into an obstacle course, showing off the ingredients that lay rotting in the fridge and languishing in the cupboards. Meals were ready-made and unsatisfying.

In short, my home became a prison, and the more I was isolated, the more I became isolated. It seemed a vicious circle and one I couldn’t find an escape from. I realised I was in serious danger of living my life from my sofa, comfort-eating, feeling sorry for myself and developing a serious lounge-wear habit.

I don’t often talk to myself, preferring to offload to the cat instead, but this time I gave myself a shaking down. This had to stop. I used to love my house – it was a place where I was bringing up The Teenager. I had stamped our style all over it; it was fun, bright, comfortable and, well, home.

Over the next couple of months, I ventured a little further out. Ok, I got tired, I tripped up. I dropped a whole cup of coffee over myself. I started to think, who cares? And why do I care so much? It wasn’t easy. It was painful and embarrassing, but the alternative, that looming prison-home was far worse.

Nowadays, I have accepted that life will never be like before. Spontaneity has gone, never to be seen again. The rules have changed and I have to change with them or be left behind. I’ve worked out my high-energy points and low-energy points and put them to good use. I accept there will be down times, when I have to rest or pay the consequences. I make the most of the up times.

My house has returned to it’s former state – it is a place I feel safe and comfortable in. I love it. I love my squishy sofa. I love my kitchen – it plays host to fresh ingredients and a sprinkling of ready-meals and they happily co-exist. I have a stack of books ready for when all I can do is slump on the sofa, as elegantly as possible.

And now, when I’m having a really bad MS week, I’m tussling with my house again. I have a pile of uni books to read and I could do with wrapping myself in clingfilm and lying down somewhere quiet in a bid to lose weight.

My house could be a prison, or it could be a safe haven I can return to …

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Eyes Wide Open

googlyNow, this is strange.

Since MS, I’m quite used to falling asleep at the drop of a hat, dozing off mid-conversation and eyeing up anything remotely comfortable – in any location – as a possible bed.

If I’m in a home-furnishings shop I’ll prod and pummel cushions, checking for sleep-ability. Too small, too hard, too soft. Too … not right.

But until now, I’ve never fallen asleep sitting up.

It’s a recent development and quite bizarre. The first time it happened, I was flicking through How to Write a Killer Novel in Ten Days, studiously highlighting important points (I may as well have highlighted the entire book).

Suddenly, my eyes went ‘all googly’ (technical term). They rolled around my head. I fought back, urging myself to wake up. The googly eyes continued and I dozed off, but was still able to hear everything around me. Very odd and ever so slightly terrifying.

I knew I was aware of my surroundings as I could hear The Teenager thundering down the stairs and snapping his fingers in front of my face, yelling, ‘Aaaaaand, you’re back in the room. Can I have some toast?’

It was exactly like being hypnotised, but being hypnotised for no good reason, such as creating an aversion to crisps or having an inexplicable hatred of Kinder chocolate.

The second time it happened was last night. I was watching a very interesting programme on catch-up and was just getting to the good-bit, the unveiling of the villain, when, blam, googly-eyes started up again. I shook my head, snapped it back. To no avail. Boom, I was out for the count.

I was only revived when The Teenager shook my shoulder and told me it was past my bedtime and there was no milk in the house. Unfortunately, the side-effect of googly-eyes is a complete inability to walk in a straight line, such is the strength of the induced sleep. So I staggered around the kitchen and living room, turning off lights, replenishing the cat’s crunchy food bowl, filling the kettle, then weaved my way to bed, bidding goodnight to The Teenager and his seventeen school friends who were playing online with him.

I lay in bed, pondering this new symptom. I told myself to stay calm. It could pass. It may not. So, I can sleep anywhere if I lie down and now if I sit up.

What happens if I can sleep standing up?

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Now? Really?

sofaMS played a real blinder yesterday.

I left my house early to attend an important meeting.

When I got back hours later and put the key in my lock, I was hit by a swinging bunch of MS boxing gloves, all aiming straight for me. I was utterly hammered and poleaxed by MS.

MS is very rude and completely lacking in manners.

I collapsed into the nearest chair and stayed there for an hour. I couldn’t move, couldn’t think. All I could do was stare straight ahead, stunned by overwhelming fatigue.

Eventually, I crawled to the sofa and stayed there for another hour, shopping bags at my feet, the cat demonstrating her increasing annoyance that her food bowl was empty and I wasn’t playing with her.

Inside, I was screaming. Thoughts came rushing back into my battered brain – if I can get up, I must feed the cat. If I can get up, I have to cook dinner. If I can get up, I can tidy up.

If I could only get up.

I have never felt more alone. The skies darkened outside, the curtains remained open. The rain hammered down.

I knew what was happening – a complete MS blackout. I’m surprised it took so long.

These last three weeks I’ve been running on adrenalin and carbs, looking after my ill relative (with the help of my wonderful family), working, studying, sorting out The Teenager and the house. I’m a bruised duck, gliding erratically along, paddling frantically beneath the surface.

MS is never far away. It’s a dark shadow, stalking and lurking, just waiting to strike again.

The evening rolled on. If I could just get through it and fall into bed, the morning might look brighter. When I was able to, I feigned productivity – reading a couple of chapters of my ‘How To Write a Novel’ book, starting a shopping list – Bloo, bin bags, strawberry jam – , changing the loo roll in the bathroom. Result.

At 9pm I melted into my bed and stayed there for eleven hours.

Today has been better but I’m still battling to keep MS at bay. I’m exhausted but still trucking on. This is not the time to square up to MS. There’s never a good time, but, seriously, now?

Anyway, this evening I will mostly be trying to complete my homework for Uni tomorrow; I will be attempting to compose my novel synopsis – something along the lines of, ‘this will be a superlatively wonderful book and I’ll do lots of research, honest.’

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System Shutdown – Prepare to Standby …

shutdownYou just know, don’t you?

As soon as you wake in the morning, get up and fall smack into the nearest wall, you just know.

MS is not only content with corrupting your system, it’s staging a total takeover bid.

I had one of those days yesterday.

Usually, I can keep stuff under wraps, get on with life despite the inner physical and mental turmoil that MS brings. Not so on one of those days.

My vision was blurred, I was exhausted and I felt utterly, totally crushed. I could feel my brain shutting down to Basic Mode.

Inside, I was horrified. Worst case scenarios were filtering into what was left of my brain. My main aim was to get through the day and still appear relatively normal to The Teenager; so long as I could nod and smile in the appropriate places, hand out some money and put a wash on, I was covering all bases.

The Teenager had other ideas: he fancied a heart-to-heart about the football relegation zone, who was headlining the Reading Festival next year (gah) and the merits of various protein shakes. I nodded and smiled in the appropriate places. I think.

I fell asleep on the sofa at 10am and woke up three hours later to find a glass of squash with a post-it note from The Teenager attached, reading, ‘Good Morning! (smiley face)’.

Later on we had the Loose Jeans Drama. He was going out for a sixth form party. He got dressed (over several hours). Finally, he came flopping down the stairs, arms swinging loosely, an angry look on his face.

‘Look, just, like, look.’

‘Oh. Very nice dear. You look lovely.’

‘No. I don’t. Look. I can’t go. Looks stooopid.’

Pause. His hair? His shirt? Not enough Lynx? Too much? I had to be very, very tactful.

‘Er, you look, well, so handsome.’

‘Yeah, right, mums always say that, like, d’ur. Noooooo. My jeans.’

An hour-long drama cut short, he has lost a lot of weight at the gym. His jeans are loose. Very loose.

‘Well, it just shows off how much weight you’ve lost? Hmm? No?’

‘Ahhhhhh. You just don’t understand. Can I have a tenner?’

He left in a whirl of Facebook updates and texts, cursing his jeans. I collapsed. I have no idea how I survived the day. A day spent doing nothing except lying on the sofa, unable to concentrate, frightened and hoping that tomorrow would be different. It was an MS blip. We all have them?

I lay virtually unmoving until 9pm and crawled into bed. I slept for nine hours straight, woke up, didn’t trip into the wall and life looked a little, only a little, brighter. For now.

As for The Teenager, he had a great time at the party, even with loose jeans.

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What’s MS Like?

movingHmm. As they say, every person with MS has a unique set of symptoms, so no two are alike.

However, I get asked a lot, ‘what does it feel like to have MS?’.

Quite possibly the hardest question ever.

Imagine this: you wake up every morning, flex your hands, feet, arms, before stumbling out of bed.

What works?  What doesn’t? You find your phone. And drop it. Curse. Paw the carpet to find phone then trip over shoes, falling into the landing and ending up face down in the laundry basket.

Sway downstairs, knocking into the bannister. Weave your way to the kitchen. Coffee. Think about a shower. The pitfalls. Take a deep breath. Teenager has used your expensive shampoo. Again,

Consider nodding off at kitchen table. Sort lunch money, blazer, Teenage Tantrums, lost paperwork. Head to work.

Fall asleep in van. Yawn a lot. Mix up numbers, measurements, tiles. Find a quiet corner.

Back home, dread cooking a meal and dream about a private chef. Make meal, clean up, ignore leg pain, can’t ignore hands, drop everything. Clean kitchen floor, badly.

Essentially, MS is a surprise. Who knows what I’ll wake up to? It could be tripping, falling, stumbling, umming or ahhhing. My brain seems unwilling to move on from my first recorded relapse, the one that affected my speech. I mean, me? It’s almost an insult. Especially when I try to reply to the good-natured building site banter. ‘Oh, yeah, give us a minute, yeah, and I’ll think of somefink witty to say’. Too late.

MS is an oppressive bully who just won’t give up. MS will push you around, kick your feet from under you, prod you, squish your memory and generally make your normal day-to-day life a living nightmare. It will make you incapable of paying by cash (my nightmare). Coins scatter everywhere. It will make you nervous at checkouts (um, can you slow down, just a little bit?).

MS is a malevolent shadow, mimicking your actions with a macabre comic touch. Anything you do, MS will magnify. A slight stumble on a doorstep will become a massive trip through your own front door. A twitch will become an embarrassing tic you can’t get rid of. You will fall out of cars, trip into stores and scan the pavements for cracks. And in amongst it all, there will be the Clinical Neurological Fatigue (TM).

And that’s the next problem. Try explaining that to people. ‘Yup, I have to sleep a lot’.

‘Oh, me too. I love sleeping. You’re so lucky!’

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