Tag Archives: multiple sclerosis

Feb 27 2017
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Symptoms and Treatment

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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Feb 19 2017
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Work and Studying

Definitely In Spirit, Not So Much The Body …

cementFlexible working is great. Until it isn’t.

Over December and January, it meant that I could take off oodles of time with MS.

Luckily we were fairly quiet, so I spent day after day on my sofa, nursing my fatigue and nerve pain, feeling very sorry for myself and admiring my Nordic-Noir Christmas tree, i.e. it had white lights on it and not much else (too tired).

Now we are in February, those days are coming back to haunt me, and how. Money is not so much tight as non-existent. There’s no more days off and I’m still not 100%.

The good news is, I’ve devised ways to be in work, without actually doing that much. It’s genius:

  • On a large building site, I try to have complicated A3 plans open and nod, seriously, pen in hand. There’s always a pile of cement bags to sit on and cultivate the ‘hmm hmm’ look.
  • If there’s no plans, I sit on the cement bags and look up, with a pondering expression. People will think I’m checking out the roof pitch. For added authenticity, I open the calculator on my phone and tap furiously.
  • I waylay contractors with questions I already know the answers to – plumbers and electricians love nothing more than talking you through their work, wire by wire, pipe by pipe.
  • I count the bricks that have just been delivered (being careful to check the invoice beforehand so I already know the actual number).
  • Make teas and coffees for everyone. If I do this, no one will care you’re actually doing nothing at all.
  • If all else fails, I grab a brush and hold onto it for dear life. I look busy and it’s a great way to stand up straight.

So this is what I have been doing, alongside practising my ‘eyes wide open but I’m fast asleep’ look. I’m getting pretty good, which is why I think The Boss has twigged just what I’m up to.

He bought me a teeny-tiny computer a couple of days ago, so we can synch stuff. Which means I have to do some work. He’s also looking in to office spaces and has booked me into the Apple Store’s ‘Macs for Complete and Utter Numpties’ session next week. (there’s a pretzel store opposite, result).

As my best qualities are bossing people around and typing up spreadsheets, he’s taken the MS into account and is making the most of my talents. I’m a people person and there’s only so much you can say to a pile of cement bags and a tonne of sand.

I’m excited to be moving into a more office-based role. And the best news? It comes complete with zero office politics (I can’t argue with myself/no danger of being sacked for having MS), I still get to wear my builder’s gear to work as I’ll also be out and about checking up on our contractors and I can appear somewhat creative as I open my tiny Mac in the nearest coffee house.

If I could just work out how to use the Mac, I’ll be fine.

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Jan 14 2017
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Symptoms and Treatment

A Tiresome Inconvenience

sleepI’m just back from a mini-mini break, to Nottingham.

I tagged along with the Boss as he was taking his son back to Uni and what better way to ignore my looming Dissertation Deadline than to hitch a lift 150 miles away from my laptop?

I’d packed my little case, issued a stream of instructions to The Teenager (keep cat alive, lock door, don’t lose your key, etc) and had an hour to spare before I was to be picked up.

Then.

Aw, really?

That awful, prickling, niggling sensation. The one where you can almost physically feel the shutters roll down, one by one. MS fatigue. Out of the blue. It smacked me on the head so hard I felt sick. I had to sleep. I couldn’t move, so dozed sitting upright with Jeremy Kyle on pause (just when I was getting to the paternity test bit). I managed to bank enough minutes to look semi-decent for the journey, although my hair was a bit wild and my eyes were drooping.

When we hit the M50, I fell asleep. We stopped for coffee half-way and I was too tired to eat more than a bite of my KFC. Back in the car. More sleep.

Nottingham, took student out for a burger, then back to his accommodation. This morning, after a long sleep and a four-shot coffee, I promptly fell asleep in the car again and pretty much slept til Wales.

What can I say? Nottingham seems nice. But I’m still, after five years, struggling to accept this tiredness as a symptom in its own right. My walking was all over the place, I can take that. I can also accept the need to grasp my coffee cup extra tightly. I will probably have to get my boots re-soled again after all the tripping. But sleep? That’s the tricky one. It just seems such a waste.

As I drifted off outside Worcester, I tried to argue with my exhausted brain. Sleep would make me feel better. It’s MS-normal. It’s ok. But I’m not convincing myself.

I guess it’s the randomness of it – like all the other MS symptoms – but this one is so absolute. You completely remove yourself from life and that scares me. If you have foot-drop, you can still get out, albeit in a more comical fashion. If you drop a cup or bang around in the kitchen, you can make a joke out of it. But sleep is an alternate state and there’s nothing I can do about it.

For someone who has to stay in control, bring up a child, run a house and all that goes with it, to have to absent yourself from life and, in effect, become unconscious against your will, that’s a lot to take on board.

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Jan 09 2017
14 Comments
Emotions

Leaping Into The Unknown

leapParalympic champion Kadeena Cox, who has MS,  won gold in cycling and athletics last year.

She has now had her UK Sport funding suspended while she takes part in ‘The Jump’, a Channel 4 winter sports programme.

They claim it is ‘due to the nature of the activities in the show’, i.e. ski jumping. Cox later tweeted, ‘B4 judging my decisions ppl should imagine living life as a ticking time bomb. MS has changed my outlook on life, so I’m gonna enjoy skiing.’

Well said, on so many levels, and how short-sighted and discriminatory for UK Sport to judge her decision rather than supporting her as a fantastic role model?

In my own way, although much more small-scale, I know exactly what Kadeena means. All of us with MS have a ticking time bomb and a lot of us want to cram in as much as we can, while we can.

Back in 2011 when MS first made itself known to me in all its hideous colours, it was the shocking obliteration of my mind that spurred me in to action. My very first proper symptom was being unable to speak properly – I was weird enough to have a lesion sitting right on the speech part of my brain, so I started speaking nonsensical English with a German grammar form, fumbling for words and generally having the lights go off, one by one.

For an aspiring writer, it was devastating. I had almost finished my second degree, in the hope of spring-boarding to a great career. Suddenly, I couldn’t string sentences together and essays proved impossible. Luckily I was given amazing support and time extensions and finally gained a 2:1. It was hell, but I did it. MS was not going to beat me.

So what’s the most ridiculous thing I could do next, given the circumstances? Start a blog. Of course. Start writing. Go after that life-long dream, which in my case was way less sports-oriented and more becoming a writer. Why not? That ticking time-bomb.

Even more ridiculously, I signed up for a Master’s in Creative Writing. Lol. It was awful, I nearly withdrew, I got support, and I’m now in the middle of typing up my dissertation.

Kadeena uses the word ‘judging’ and she could not be more right. People do judge you. If you have a disability, you should do exactly what society deems appropriate and if not, you break some unwritten protocol. I’ve been told, ‘what were you banging on about, you got a 2:1?’. Yes, but only after working ten times as hard as I would have pre-MS. I’m stubborn like that.

I’ve been told, ‘You? Take a Master’s?’ Yes. I like to challenge myself, not on the ski slopes, but on paper. It’s been a voyage of self-discovery (i.e. most of my writing is awful, but some of it is good). I’ve been pushed beyond mental endurance and it has been good for me. Horrible at the time, but in retrospect, fantastic.

So could you just stop judging us? Why not get a life instead?

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Jan 04 2017
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The Teenager

Food For Thought

chickenMe and The Teenager try to go out for a meal every couple of weeks.

It’s a chance to catch up, do some mom-and-son bonding and generally put the world to rights.

So yesterday, armed with a 40% off voucher, we headed to our local Harvester.

Not the most glamorous of locations but it suited The Teenager down to the ground, given he’s on a training programme for which he wolfs down 5,000 calories a day (he has an app, he counts them).

I probably eat the same amount, minus the high intensity exercise, but at least we have something in common.

Anyway, we settled down in a booth and read over the wipe-clean menu. I checked out the low-calorie options, dismissing them quickly. A burger. With fries and a huge dollop of mayo. Sorted.

I asked The Teenager what he fancied.

He looked up from the menu, snapped it shut and yelled,

‘Chicken! A whole chicken!’

‘Really?’

‘Yeah. And some ribs as a side. Just the little ones. I’m not, like, greedy. Check out my pecs mum!’

He flexed his muscles for me to admire, tapped his stats into his apps and wandered off to the salad bar, bringing back five rolls. He ate them and went back for five more.

I played with my diced beetroot and grated carrots.

Our meals arrived and he duly took a photo and uploaded it to social media before tucking in.

‘So’, I began, ‘how’s the studying going?’

‘Can’t talk. Eating.’

‘Ah. Chicken looks nice dear.’

Within five minutes, there was a plate of bones in front of him. He scooted off to refill his free refill glass for the fourth time.

‘So. How’s the studying going?’

‘Good, ta.’

‘I was thinking about trying that fasting diet. You know, to shift the pounds. What do you think? You’re the weight-loss expert.’

‘Mum. No. No way.’

‘Why not?’

‘Ok, so you take in 500 calories. You’ve got no energy. But ….’ He paused. ‘Like, d’uh, you have MS? Bit stupid, no?’

‘Ah, I see. Good point.’

‘Mum, you know when I’m a millionaire and I buy you a house, or a big shed, and I go round the world and stuff?’

‘Erm, yup?’

‘Well, I’ve worked out how to do it.’

Silicon Valley? Inventor? Rugby player?’

‘I’m going to become a … competitive eater.’

‘Right.’

‘You know, there’s loads of people on YouTube. They make a fortune. Did you see how fast I ate that chicken? Did you?’

‘Well, yes?’

‘Google it. There’s a restaurant near us. Going to start there.’

I googled it. There’s just one problem.

‘It says here you’ve got to eat everything, everything, including all the lettuce, tomato and onions. Lol.’

‘Mum, don’t say lol.’

‘You don’t eat salad? Bae.’

‘Mum, don’t say bae. Or peng or dench.’

‘Just saying. Groovy.’

‘Mum, I feel a bit ill. I need to get home before my stomach explodes.’

We left. He groaned in the car all the way home.

Until next time …

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