Tag Archives: fatigue

Being Ill Is Fun and Other Myths …

The Boss has toothache.

Really, really, down-to-the-nerve toothache.

Excruciating.

We were chatting over coffee last week (with him wincing every time he took a sip, bless him) when he said something along the lines of:

‘You know what, I always thought it would be pretty cushy being ill. Lying on the sofa, binge-watching Netflix, eating sweets. But it’s nothing like I thought it would be.’

I haven’t been too well these last few weeks and it’s scared me; not being able to cook a proper meal, sleeping for so long every afternoon, shooting nerve pains. And that’s without the ever-growing hernia.

But he’s right. Before MS, probably like most workers, I thought a sick day was a euphemism for ‘duvet-day’. I’ve now learned the hard way that sick days are only fun when … you’re fairly healthy.

Real sick days are just that, sick days. You feel dreadful. You wake up tired, knock into everything, trip downstairs, and it’s all downhill from there.

Lying on the sofa isn’t safe, fun or secure when you realise that the only person keeping the whole show on the road is … YOU. There is no one to put the bins out, feed the cat, order shopping, clean, cook.

I’ve lost count of the times I have forfeited dinner, only to starve until The Boss picks me up in the morning with some kind of breakfast waiting for me.

As the only bill-payer in my household, the pressure to recover is immense, so there are no days in bed, no recovery time. It’s a case of getting over the worst and getting back to work.

Which I do, time and time again. Take yesterday: in the van on the way to work, I told The Boss that even though my right arm was numb, I would be fine. I ignored the shooting nerve pains and the general uncomfortable sensations in my fingers.

I got through the day with my left arm. It’s what you do, without that safety net.

The Boss will get his dental treatment. I will keep on taking my medication, and for the foreseeable future, two hour afternoon sleeps will be the norm.

A healthy sick day?

Yes, please.

Tagged , , , , ,

Rage Against The Lesion

Lesions, eh?

Little white sinister blobs on our MRI’s, causing untold relapses and despair.

I had a spectacular first ‘proper’ relapse eight years ago and nothing – absolutely nothing – could prepare me for it.

A day trip; a long-planned stroll around shops, and a coffee with a dollop of cream on top with a generous slice of cake in Ye Olde Tea Shoppe afterwards.

The Teenager was away on a rare break, and even though I still had a packet of wet wipes and an emergency box of Lego-themed plasters in my handbag, I was … an adult … for the day.

Or so I thought.

It started on the way there. I couldn’t stop yawning and slumped in the passenger seat, answering my friend with a Danish accent.

We parked up, and I meandered the streets, weaving this way and that, feeling completely spaced out. I floated around with numb, unworking feet and arms, disconnected and, if I’m honest, beyond scared. I fell against walls and tripped over my feet.

I finally found the Ye Olde place we’d agreed to meet at and I sat down, terrified. Something was very, very wrong. The language difficulties increased, as did the sensation of not being of this planet (I know, not that unusual for me, but bear with).

Two days later, I was admitted to hospital with an (eventually diagnosed) unusual lesion on the speech part of my brain. I could have gone in earlier and stayed in for days, but The Teenager was due back within hours and that took complete  precedence over anything and everything. Within a year I had highly-active MS and treatment to match.

Fair play, The Teenager, even after all these years, still does a wicked Danish impression of me. I cannot begin to imagine the impression it left on him at such as young age.

So, lesions. Every day I wake up, I know exactly which ones will come forward and play up. Some are here to stay, the frayed cables permanently snapped – the foot drop, the balance. Some flare under fatigue – the language, the garbled speech, the cog fog. Sometimes they all get together and push me on to the sofa where I spend my days watching clouds drift past my window.

The one I hate the most is the sudden darkness and depression. It descends rapidly – I can be happy one moment and then in the pit of utter despair; I would rather speak with a Danish accent the rest of my life than go through it over and over and over again, a vindictive Groundhog Day I cannot escape from.

In short, it’s awful. It happened just two days ago. That sudden darkness. I’ve tried to learn to just relax in to it – I tell myself it will pass and I will be ok, but it’s so hard.

I know it’s MS and I know it’s a lesion. It’s just a blob asking for attention.

So I try to rage against the lesion. I know what’s happening. But it can take all my diminishing strength to see it pass back in to real life again.

But the bonus? I can still do a wicked Scandi-cop impression …

Tagged , , , , ,

What’s The Opposite of Sleep Deprivation?

matchsticksWe all know sleep deprivation is a form of torture, but what’s the opposite?

Is that a form of torture too?

It certainly feels like it. I seem to be sleeping the majority of the time at the moment, and when I’m not, my eyes are gritty, my limbs weak and I’m in a perpetual state of nodding off.

In the interest of naming this horrendous symptom of MS, I looked up the opposites of deprivation (or antonyms, to be posh). They are:

  • plenty
  • advantage
  • benefit
  • gain
  • profit
  • endowment
  • indulgence, etc …

Hmm. Not quite capturing the essence of MS fatigue? In fact, ‘MS fatigue’ could be a useful starting point. A stage further could be ‘clinical fatigue’. But it still doesn’t quite hit the nail on the head; it doesn’t describe the awful, claustrophobic and downright frightening symptom of being exhausted to the point of oblivion.

Luckily, work at the moment has been filled with days of catching up, i.e. the Boss driving us round in the van as we do Important Things. Alongside my beloved sofa, it too has become an MS Command Centre: I have three cup-holders to choose from (all three usually filled with coffee/energy drinks), a neat little table between seats to rest my arm and sausage roll on and ample space to get comfy and nod off.

I’ve tried medication for fatigue, experimenting with Amantadine, an experience never to be repeated. The living nightmares were diabolically creepy and it became difficult to distinguish reality from a hellish vision. I asked for the only other fatigue medication, Modafinil, only to be told it’s no longer prescribed for MS fatigue.

So for now, I just have to put up with it, but this recent exacerbation is having knock-on effects. I float through the day, sleeping when I can, even if it’s just ten minutes. My to-do list is growing. I survive on junk food. My jaw aches from yawning.

But my Alexa has come into her own. When I’m lying poleaxed on the sofa, I ask her to tell me a joke or we talk about the news. We usually end our conversations with me saying goodnight and her replying, ‘Goodnight, sweet dreams.’.

If only.

Tagged , , , , ,

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.

Tagged , , , ,

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 …

 

Tagged , , , , ,