Tag Archives: fatigue

Working With MS …

dogAfter Sickness-gate with The Boss, things are at last returning to normal on the work front.

He hasn’t eaten for four days since his dodgy KFC (if only I were so blessed), and he’s still looking distinctly peaky, but yesterday I made him park up and go to the local One Stop Shop for some food.

He came back with four tins of Oxtail Soup (bleugh) and some white bread (really?).

I’ve mollycoddled him, asked him how he’s doing at regular intervals, texted him GIFs of dancing Minions, soothed his fevered brow and made sure he’s ordered a whole bunch of steel beams and cement for work.

It’s been a testing few days, especially as I have excruciating neck and back pain accompanied by electric shocks in my neck every time I move. I mentioned it to him earlier, expecting reciprocal sympathy and maybe an offer of a Domino’s pizza for dinner.

No such luck.

‘It’s different for you, you’re always ill, so if you’re always ill, it’s not like me? I’m at death’s door.’

Fair point. And perhaps The Boss and everyone who knows me in work has also got used to me being ‘ill’. I sulked a bit at this (we were stuck in traffic).

‘How’s that fair then? If I’m always ill, you should be considerate, kind and, well, caring?’

The Boss thought about this for quite a long time.

‘Yeah, we’re all mates, but, you fall asleep all the time. You always take a book to work, big ones with small writing. You finish early. We’re just used to you being … different?’

Another fair point. There’s not many jobs that would allow me to sleep whenever I wanted to, or take a book to pass the time when we’re waiting for a skip or a grab lorry. The Boss knows I’m brilliant, when I’m brilliant, and he too has built in compensation for when I’m conversely under par.

Which is actually a compliment and I take it as such.

Working for a friend, who rescued me when I was sacked from my previous job due to MS was a godsend. For both of us. I’d helped him start up the company years before, and karma brought the fortune full circle. I was able to fit into his company with no problem. It helps that I’m bossy – we’re good cop, bad cop with extra caffeine.

Sometimes, especially during this DLA-Depression, I love work, no matter how tired I am. The camaraderie, the ‘banter’, the normality of it all. Other times, I fantasise about being at home all day, being ill, giving in to it all.

Which is how I think the DWP would like me to be.

Ultimately, I may have no choice.

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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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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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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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