Tag Archives: foot drop

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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The One About the Courgettes

courgettesI am a walking, stumbling slapstick comedy.

I’m desperately trying to see the funny side but yesterday took the biscuit (or courgette, now I’ve gone over to the Paleo side).

The shelves in my kitchen are groaning under the weight of vegetables so yesterday I decided to tidy them into neat heaps, reds/purples to one side and greens on the other with mushrooms and onions somewhere in between.

I found myself with a courgette in each hand and paused momentarily to give them a gentle squeeze – ‘cook tonight? Can I bear another courgette spiralized into tasty noodles?’

Having made my decision, ‘nah, not tonight’, I turned to pop them on the green pile. However, my left leg decided to stay where it was (such is the contrary, tantrum-y behaviour of MS), next to a curtain hanging over the back door to keep out the Welsh damp and random mice entrails dumped by the cat – a rather fetching print of bookshelves. Anyway, the last thought that went through my mind was, ‘must save the courgettes’.

I twisted, pesky leg still refusing to behave, caught my other leg in the curtain, spun in a circle and landed face down on my kitchen floor, courgettes held aloft. I lay there, gazing at the ceiling before hurling the courgettes against the fridge, where they bounced off and landed on the kitchen table, knocking my coffee over and scattering post-it notes.

Courgettes are dangerous.

It wasn’t the best MS day yesterday – a lot of my symptoms are ramping up and it’s getting harder to keep them under control. After the Courgette Incident, I had to go to the surgery for my monthly Alemtuzumab blood test. Perhaps sensing I had a day off work, my feet decided to do a little American line dance rather than behave. I jigged into the surgery, danced in front of the electronic booking-in computer, took a seat and watched as my feet twitched and jerked. Fun.

It was also, of course, my first day back in Uni after the Christmas break. We were a packed class, rapt as we listened to the history of the Flâneur (basically a nosy people-watcher from the last century who then writes about it). Trying to look semi-intelligent, I rested my face on my hand, elbow on the desk. Out of nowhere, my fingers started to twitch so badly it looked like I was sending dodgy signals to the tutor.

I sat on them. Wish I’d done the same to the courgettes.

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Dragging My Feet….

don't panicYou know when you wake up with a brand spanking-new MS symptom?

That heart-stopping moment when all your worst fears come crashing in on you?

Yup. This happened last week. A normal morning – coffee, cat, catch-up with paperwork, countdown to waking The Teenager.

Except that morning was different. My foot refused to play fair. It gave up the ghost, schlepping behind me like a stroppy Teenager (and boy, do I have experience of that).

Panic rose and I quelled it. The next day, same thing. And the next. A new symptom. Probably every person with MS’s worst nightmare.

I decided to beat it at it’s own game, determinedly lifting the naughty foot with every step. Only problem was, I looked ever so slightly odd. Exaggerated. Like I was walking in slow motion to the ‘Chariots of Fire’ theme tune.

I ran it past the MS nurse (the problem, not my foot) but declined an appointment. ‘I’ll be fine!’. I ran it past the chiropractor who urged me to call the MS team. ‘I’ll be fine!’ I put it out my mind. But it stayed and I dragged my foot round the house. Finally, I took the offered appointment.

What’s worse? Being told it may be a relapse or it may not be a relapse? It doesn’t really matter either way, I won’t take any more steroids. I can’t bear the thought of waking up at 2am and having a strong compulsion to dust all the lightbulbs and clean the skirting boards, such is the bizarre energy those tiny tablets give me. Plus they destroy taste buds. And I pack on the weight no matter how many edamame beans I eat.

So I am in a kind of weird limbo. I worry that the endless relapses have found a sneaky way through the Campath treatment I had. I worry about my mobility – the defining point of being accepted as ‘relatively normal’ within societal boundaries.

Above all, my dodgy, annoying, schlepping foot has dominated the last week. I am panicking. Ever so slightly.

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Haematoma Blues (And Purples, And Reds…)

haematoma bluesMy magnificent bruising has been reclassified as a haematoma, which probably explains why I’m still hobbling around almost two weeks since my accident.

I was lucky enough to see one of our fabulous MS nurses at the Work and MS conference on Saturday and during a coffee break, I rolled my jeans down in the loos to show her the injury.

She carefully examined it and suggested I take myself off to Accident and Emergency to have it scanned in case there was an underlying fracture.

To cut a long story short, my mum took me that evening and the good news is, it’s just a haematoma, not a fracture. The bad news is, the only thing I can do is wait for the swelling to go down. It’s not going anywhere fast and neither am I. The pace of my life wasn’t particularly speedy before (take a bow, MS fatigue and foot drop) but has now slowed to a virtual stop.

I’ve been told to keep my leg elevated as much as possible, so needing no excuse to lie down and fill my brain with trashy tv when I should be slaving over an essay, my sofa is now almost permanently in use, much to the chagrin of the cat.

The Teenager marvels at my ‘cushy’ life and prods the lump on my leg in wonder. He’s very much enjoying visiting friends for tea after school and has perfected his sad face when talking to their parents, ‘oh, my mum’s dreadfully ill, she’s got this massive  thing on her leg, the size of a rugby ball, honestly, she can barely speak, it’s that bad’ before gratefully accepting yet another chocolate roll or can of Coke.

I’m sure I’ll be back on my feet soon enough and will no doubt look back wistfully on my weeks at home when I go back to work.  But I do miss the banter and bacon rolls and even my nickname, ‘Half-Shift’…

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Tripping All Over The Place

Did you know twice as many people die in trips and falls at home than in car crashes? No, me neither until I read the cheery news over breakfast yesterday. Now I have another thing to add to my list of worries that keep me awake in the wee small hours.

Foot drop is the bane of my life. I trip over flat surfaces, the cat, pavements, dust balls and just about anything else in my way.

At Christmas I tripped up the stairs, then fell backwards, smashing into my bookcase and landing like a squashed spider on the floor, books raining down on me. The bruising was spectacular, but I did find a book I’d given up as lost.

There’s no way of knowing when foot drop will strike. One day it leaves you in peace, the next it’s shoving you around the high street with abandon. People give me a wide berth, as hey, I could be drunk. At 9.30 am. Kerbs taunt me, potholes are a logistical nightmare when crossing the road and cobble-stones are pure evil.

Sorry Shakespeare, but I am never, ever going to Stratford-upon-Avon ever again. A lovely little day trip turned into a day from hell when I got out the car and saw cobble-stones stretched out in every direction. I clung to my friend for dear life and quite possibly looked as if I was being taken out from a secure unit for the weekend as I muttered, ‘evil, evil things, I hate you’ under my breath every few minutes as he dragged me up the road.

Then there was the Gastro Pub Incident, when a friend took me out for dinner. A short stumble to the bathroom led to disaster as I cartwheeled across the floor in front of six bemused diners, ending up halfway under their table. To compound my misery, my friend hadn’t even noticed as he was too busy scrolling through his phone. I limped back to our table, face burning, sniveling with pain and embarrassment.

Anyway, the good news is, the sixth most common way to die at home is by drowning in the bath. Thank you, MS heat intolerance for making baths a thing of the past. At least you’re good for something…

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