Tag Archives: fatigue

Aw, No, Not Again?

My three worst MS symptoms are fatigue, nerve pain and brain fog, in no particular order.

To a lot of people, this sounds fairly manageable; we all get tired, a bit fuzzy in the old brain and we all have aching legs and arms? Yes, but, I’m only telling you the three worst symptoms, and there’s plenty more.

Anyway, I like to think I’m quite savvy with my MS comings and goings, yet it never, ever fails to surprise me.

Long story short, the MS fatigue is back with a vengeance and it means serious business. On Sunday, I felt so tired, I actually wanted to throw up. I flung myself on the sofa and was dead to the world for two hours. On Monday, I called in sick to work and went back to bed. Twice.

I went to work today (I have to, bills), navigated the terrain really well and luckily we finished early. My lovely boss even walked up the road and payed a cheque in for me while I sat on the door step of the house we are working at, feeling quite useful as I watched out for parking wardens.

Back home, I got out of the works van, stood on the ground, then my left leg gave way and I just collapsed. Bit embarrassing, extremely painful, hope the neighbours didn’t see.

So I have a flare up and it’s a bad one. I haven’t been like this for months. Every part of me is saying, ‘breathe, take it easy, it’s fine’, but inside I’m fretting. I’ve already missed so much time off work and studying has been pared back to the absolute minimum.

Brain fog has ensured that for the last two weeks I’ve run out of stuff to watch on Netflix and Amazon and am looking forward to the next series of ‘Married at First Sight’. Anything is easier than picking up books.

I’m trying to look after myself though – the boss makes sure I get to shops for food, he’s understanding about the time off and he cheers me up no end when we’re sat in the van putting the world to rights, as builders do. He even bought me a burrito today and expressed surprise when I swooped in on his leftovers, ‘nom, nom, first cooked food I’ve had in days‘.

I know this will pass, it’s just that awful sinking feeling when you know you’ve got to ride out the latest setback. I’ve instigated Code Red, the Ten Minute Tomato Rule – try ten minutes of everything. So laundry is in machine. Cat is fed (she’s on a Whiskas strike and will only accept Sheba – it’s a battle of attrition). I vacuum for one minute every other day and take nine minutes out.

It will all be fine. In the end.

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Playing The MS Game

Almost seven years after my diagnosis, and years of symptoms before that, I think I’m now fairly adept at playing the MS Game.

I know when it’s best to:

Wake up – 5am – brain at fullest function, emails, print things off, brainstorm Uni stuff. Coffee helps.

Shower – straight after work (I know, weird, huh?) but working as a builder, it’s best to wait until after work as I just can’t handle two showers in a day. I shove my hair under a woolly hat and hope for the best (and some customers call me ‘lad’, gah).

Cook – a moveable feast – whenever I have the energy. Freezer bags of pre-cooked food are my friend for bad days when I can do nothing more than microwave. On really bad days, well …

Work – has changed so much over the years. Thank goodness my job is flexible and can be adjusted to how I’m feeling, plus working with a group of friends is balm for the soul, compared to the bullying I put up with in my previous job.

Study – five minutes here, ten there. Anywhere and everywhere. Boss drooling in Screwfix? Whip book out, highlighter in hand. Boss talking for hours with the plumber/electrician/plasterer? Same. As friends, we go back a very long way and he knows I pull my weight (lol).

Do Housework – on an ‘As And When’ Basis. Cordless vacuum, ignore the dust. Keep hold of that leaflet for cleaning services for when I win the lottery.

LIve – the tricky one. I no longer travel alone. I rarely socialize. Once, twice a month – it’s a lot of effort. Home is my safe space. Meetings are planned for the morning and taxis are a godsend. It’s the afternoons and evenings that are the problem.

Handle Relapses – the worst of all worlds, especially living alone. All of the above is scaled back to The Sofa.

Hold a Pity-Party – definitely in the wee small hours. I’m plagued by MS insomnia at the moment and seem to feel every single symptom, amplified. My legs crawl with neuropathic pain, I twitch, my hands move too fast or too slow. It’s a waking nightmare.

I think when you have MS, you live with endless body-consciousness – we know exactly what we are capable of (or not) on a day-to-day basis. I still smile when someone says, ‘yeah, cool, next Thursday?

I have absolutely no idea how next Thursday is going to be …

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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.

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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 …

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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.

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