Tag Archives: MS

The One Where I’m Put Into Storage …

storageThe Boss has finally noticed that I’m not operating at full strength over the last couple of months so has decided to put me into storage.

We’re working on a particularly large renovation so he hired a storage container for me to use as an on-site office, which means I’m within yelling distance, but far enough away to be able to doze off and/or daydream.

He bought me a MacBook Air for me to project manage everything and so far I have created some lovely colour-coded tables and notebooks. I’ve played around with the fonts and sizes and can easily pass a couple of hours highlighting and un-highlighting everything in bold or itallic.

My office also doubles as a mini-kitchen, complete with a table and chairs for the labourers to take their breaks. I have a kettle, microwave, toaster, fridge and radio, plus ample supplies of biscuits which is an ongoing struggle of avoidance. I also have a set of shelves where I have arranged (and rearranged) loo roll, cloths, tea-towels, kitchen spray, etc). It’s truly amazing what you can find to do in a storage container.

I miss being more hands-on, but my balance is shot, I don’t walk in a straight line and when I yawn, the labourers start yawning too. I’m a bad influence. So, The Boss does all the wandering around the site stuff, looking serious and important, then feeds all the relevant information back to me, which I promptly forget. After much trial and error, we’ve now developed a system of notes which he sends straight from his phone to my Mac. Genius. I then put them in the correct colour-coded table.

As I’ve been so poorly, The Boss has been picking me up for work recently and this is when the real work gets done. We brainstorm, which is quite funny as it’s my brain that’s playing up, but actually, it’s a good way to push projects forward as we swap ideas and chew over problems.

A couple of people have asked me why I’m so determined to stay in work despite feeling absolutely dreadful but I’d rather feel dreadful yet useful in work than dreadful and useless at home. I’ve been there, done that too many times.

However, I do have one fear. I remember as a kid watching a film where the baddie was hiding in a storage container at a port. The doors were closed and the last scene was of that container being craned onto a huge ship, bound for somewhere thousands of miles away. Every time I close my eyes (just for five minutes, lol), I worry that I’ll wake up on my way to China with nothing to sustain me but a packet of Kit-Kats and a half-eaten ham roll …

 

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Ran Out of Spoons, Moved on to Forks …

spoonAccording to the Spoon Theory , people with an illness such as MS have a set amount of energy each day – spoons – and you use them up as the day goes along. Run out of spoons, run out of energy.

It’s a great analogy – simple to explain and easy for others to understand. In theory.

Try explaining why you feel like the world is ending when outwardly, you seem ab-sooo-looot-ly fine.

Last Friday is a great case in point for me. There was a Renovation/Building show in Birmingham, around a 90 minute drive from my house. An ideal work opportunity, as I’m in the building industry.

I was duly semi-presentable at 7am (!) for The Boss to pick me up. He’d helpfully inserted a mug full of extra-shot-caffeine into the cup holder and I was wide-eyed and bushy-tailed all the way up the motorway.

At the venue I got my name badge and started to wander around the 500 – 500! – stalls. I crumpled after stall 7. I got my walking stick out and The Boss took my arm for the rest of the 493 stalls. It was hot, I was off-balance, gibbering and going slightly bonkers.

I was muttering ‘bi-folds’, ‘ventilation systems’ and ‘coloured concrete’ under my breath. I took every free gift going and ended up with a decent stash of pens, notepads, mints and Gummi Bears. Plus a set of knives, bizarrely.

And then I collapsed. Fair play, it was graceful. My legs simply folded from beneath me. I had had warning signs over the last couple of weeks and dismissed them – ‘ach, it was nothing’.

Now I knew it wasn’t nothing. This was real and it scared the Gummi Bears out of me. I made it back to the car, just. And slept the whole way back to Wales, waking briefly around Monmouth, before slumping back into oblivion.

Back at my house, The Boss deposited me safely through my front door and I made straight for the sofa. I had to find some elusive spoons – there was a gathering from the writing group I attend, that evening in a local pub. I could do this.

Except, I couldn’t.

I emailed everyone my apologies through tears. A Friday night, and I was condemned to my sofa.

I had run out of spoons and believed I could move onto a trusty reserve, the forks. In real life, pre-MS, I had oodles of reserve energy (those pesky forks). They could be called upon at short notice and would pull me through any situation. But not this time. I was all out of them too.

So now I am cutlery-less. No spoons, no forks. As for knives, the closest I get is my free gift (they’re super sharp and quite lovely). My life at the moment consists of work (or similar activity) til 2pm, then Recovery until 10pm, when I go to bed and it all starts again. There’s nothing extra. It’s boring. It’s frightening.

Is this my future?

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Middling Along …

fineI’m going through some weird kind of middling relapse.

It hasn’t poleaxed me  – but it’s come pretty close – and it hasn’t rendered me absolutely useless for work (yup, The Boss would no doubt disagree). Although I was off work for several weeks over the Winter with a concrete, solid, horrendous relapse.

Instead, it’s calibrated itself just so:

  • Just so that I can go to work, but end up on the sofa for the rest of the day/evening.
  • Just so that I can manage to supply The Teenager with pocket money but only a passing interest in his Instagram photos of blurry figures bouncing along to some soundtrack in a dark and dingy club.
  • Just so that I can feed the cat but not take delight in the fact that she loves her £5.99 Play Tunnel from ‘Bargains R Us’, cunningly laced with a liberal spray of catnip.

Super-glued to my sofa, I have a whole lot of time to reflect, and feel ill. Part of me wishes the relapse was a full-blown beauty, blasting real life out of the water. The other part is eternally grateful I can still manage a semblance of normality.

Which comprises:

  • Bustling around when The Teenager is home from school (for four minutes, long enough to Meet ‘n’ Greet, bring him up to speed on the fridge contents and arrange a money transfer).
  • Bustling around when The Cat comes home, chastising her for staying out all night then feeding her special biscuits (a free gift from Ocado).
  • Replying to emails, using a jaunty, happy tone. Before dying slowly and feeling very sorry for myself.

I was chatting to The Boss today in the van on our way between jobs. I was trying to explain to him how it felt:

‘… you know, when you’re shattered, lying on the sofa wishing that someone could just make dinner? And the laundry was done. And the place was clean-ish?’

He paused. Then laughed. ‘My mum does my laundry and if I’m hungry, I get a Deliveroo.’

I give up …

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Write Of Passage …

signatureWith one signature, that was it. Done.

I had met The Teenager in our local building society after school finished the other day.

At, 17, it was time for him to take control of his savings book, still tucked inside his ‘Children Saver’ folder, complete with a smiling dragon. Previously, he needed both our signatures to access his Christmas and Birthday money, much to his annoyance. And mine, especially when I had to meet him after work to withdraw a fiver for a gaming magazine he absolutely had to have.

We approached the counter, and after much convincing that this 6′ 4” Teenager was in fact 17, we signed the forms, transferred ownership into his name alone and left, leaving behind the smiley dragon folder.

And that was that. I recalled the day we opened the account together – the temper tantrum when he was offered a red dragon money-bank and not the shiny gold one. The negotiations, the store-room rummagings and the crying-hiccups until they found the last gold one. He clasped it in his tiny hands and stopped crying long enough to peer over the counter and rasp a tearful, ‘thank you’.

And there we go – The Teenager now has his own bank account, building society account, National Insurance Number and numerous other bits and bobs. From the Red Book he had as a baby, where percentiles were jotted down and compared with the average, to his GCSE results, he has a trail of paperwork and all the complications that go with it.

I clearly remember my very young son hitching up his dungaree strap and asking me (in nursery!) why his name was so long and why he always ran out of paint when he had to write it across the top of his painting. Simple – Christopher might be his full name, but he could choose what he wanted to be called. He chose Chris (natch) and for a time wanted to be known as ‘Kit’. At that point, he luckily had no idea just how complicated and long his surnames were.

Anyway, today has been a milestone. I’ve started a file for The Teenager, with all his info that I usually file under Family Stuff. It’s a weird separation, but forward-looking. He can take it to University with him, and have everything in one place, until he loses it and I tell him I’ve copied everything, just in case.

So as he inches towards adulthood, I take more and more of a back seat. It’s another stage, successfully navigated. When I was first diagnosed with MS, my only wish was to remain well enough to see him through his teenage years and out into the big wide world.

We’re almost there.

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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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