Tag Archives: fatigue

Jun 16 2014
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Symptoms and Treatment

MS For Teenagers

AppleWe’ve had a very trying weekend and things came to an explosive head on Saturday evening.

The Teenager: WHY are you so tired just now? WHY’S your face all red? WHY are you hugging the fan? Oi, WAKE UP! Mum, mum, mum, mum, mum, mum, muuuuuuuuuuuuuuuuuum. Can I have a Dominos?

Me: I’m awake. You’ve just had dinner so you can’t be hungry. And we’ve talked about this before. Sweetie.

Teenager: Yeah, you get…..tired…..and hot….and grumpy……and, I mean, like, I get tired and hot too. My X-box gets hot. The cat gets hot. And it’s summer, like d’uh. And I’m hungry all the time coz I’m growing. So ner.

Slammed door. Me, in pieces on the sofa.

How can I explain to him? I wrack my heat-addled brain, jot down a few points then fall asleep.

Later that evening, he thumps downstairs and I swiftly intercept him on his way to the fridge. We sit on the sofas. He slumps, like, whatever, working his way through two Müller Corners, a croissant and the lollipop he gave me earlier (the one I was keeping for later).

Anyway, here goes. Keep it simple. Ok. Heat intolerance – imagine you’re in a sauna and the door is locked. An hour later, exhausted and gasping for breath, unable to think clearly, you have to put the oven on and cook dinner. (at this point, The Teenager plays his trump card – ‘you could have called Dominos, dur’). Smug grin. I calmly continue; then you have to make a few phone calls, reply to some emails, do the laundry, feed the cat and water the plants. All the time you’re feeling hotter and hotter. The bits in your brain start to melt in the heat and send out the wrong messages and your body just doesn’t do what it wants to.

The Teenager: Oh. I get like that when I’m on the rugby pitch, for like, hours.

Me: Exactly! Imagine they won’t let you off the pitch to have some water. They’re pushing you to keep on going. You’re boiling.

The Teenager: Oh. ‘K. So why are you so tired. Tired, tired, tired, all the time. S’not fair. All the other mums don’t get tired. S’not fair, s’not.

Right. It’s not really tiredness like you know. It’s kind of the same as when I get hot. My brain (Teenager sniggers) gets tired out from working extra hard to keep sending the right signals so it gets tired more quickly than, say, your brain (snigger). That’s why I have to sleep a bit more, to rest it a little.

The Teenager: Uh, ok. Can I go now? Got friends waiting for me – X-box party. Paaaaaaaartaaaaaay! See ya!

Did I get the message through? I wander through the house, fretting. Until I come across my lovely, neat desk. Everything in it’s place. Except, under my goldfish paperweight there’s a takeaway pizza menu, topping choices thoughtfully highlighted by The Teenager.

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Mar 18 2014
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Symptoms and Treatment

Energy Overkill

exhaustedI seem to be in a remission of sorts.

Saying that, I still trip over my feet, the cat, cobwebs, etc. I still lurch in the shower, find shampoo bottles impossible to squeeze and hold onto walls in my house whilst pinballing round corners.

But – I have energy. Energy! An odd, highly intoxicating concept.

And typically for me, I am exploiting it to the max -who knows how long it will last? I could be unplugged within the next hour, tomorrow, next week, so boy, am I going to make the most of it.

The downside is, I crash and burn any time between 7 and 10pm, woken from my gentle slumbers on the sofa by The Teenager turning the light on in the fridge, ferreting around for stray yoghurts that escaped his first food-finding mission.

And when I say crash and burn, I mean it quite literally. I can be absorbed in a book, a TV programme, my diary and suddenly I feel my eyelids growing heavier, shutting up shop for the day. Just when I think, ‘must stand up, must move away from the sofa, now, this minute’, blam. Sudden oblivion.

I am heading for a fall, stumbling on the knife-edge. Something’s got to give, I just don’t know when. I’m a gambler. I make pacts with MS, who has never been the fairest of players. Why am I doing this? I have been swept along by The Energy, but it has to be repaid in some form.

I make mistakes. I think I can do more than I should. Which is why my right arm is bandaged up and I have sprained my ankle. I am covered in bruises from moving quicker than I really should. I’m hobbling around, mentally exhausted but still physically moving on.

I reconcile this danger with the sheer pleasure of being released from the daily grind of MS. Or have I just got used to it? Thinking about it, even though I believe I have energy now, it’s nothing compared to how I used to feel, pre-MS.

Inwardly, I am tired. Externally, I am pushing myself far too far. When will I crash? Probably sooner than later.

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Aug 18 2013
26 Comments
Symptoms and Treatment

Any Time, Any Place

sleepIf they gave out medals for sleeping, I’d be top of the podium (after a quick nap).

I wake up tired, I go to bed tired. I yawn constantly. And not polite little yawns either. Massive, jaw-aching, cartoon-like yawns. ‘Am I boring you?’ is a phrase I hear an awful lot.

It’s exhausting (excuse the pun) being tired all the time. It’s a bit like MS in miniature – the feeling of being disconnected from society, in a little bubble all of my own.

Days are meticulously planned, pockets of time doled out like bargaining chips. Spontaneity is a thing of the past, or at least, I have to think about it very carefully. Which kind of defeats the object.

There is a famous spoon theory, to explain chronic tiredness to other people, about how you only have a set amount of energy in one day. I prefer to think of the Mallet Theory. Say you start the day with ten mallets. You have to give one up every time you feel you’ve been coshed over the head by MS fatigue. If you’ve got any left at the end of the day, it’s been a good one.

The thing about MS fatigue, like most other MS symptoms, is that it can be managed, not cured. I have loads of strategies – a handy duvet tucked behind the sofa, rushing around like a wild woman when I suddenly find myself with some precious energy, preparing food ready for later, a command table set up next to my sofa with everything to hand. In fact, it’s very similar to when The Teenager was a screaming cute little baby. The midwife would chastise me, ‘now dear, mummy must sleep when baby does, mummy must be guided by baby, baby won’t mind if you haven’t managed to dust the house.’ Baby won’t mind if I shut the door on you, then.

I’d like to say I feel better with all this sleep. I don’t. It’s not a luxury, it’s a necessity. It barely brings me back up to my baseline energy levels, and even that’s way below par. But as with everything else that MS throws at me, I’ve adapted to it. It’s kind of normal now. Only problem is, I keep running out of mallets. …

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Jul 14 2013
12 Comments
The Teenager

Guilty As Charged

gulty as chargedSomething lovely happened yesterday that also broke my heart into tiny pieces.

The Teenager had arranged to go out biking with his friends in the morning. That was great – he’s an outdoorsy kid and I’d much rather he was out than stuck in his bedroom in front of the computer screen. He phoned me early afternoon to tell me excitedly he’d been invited to the beach by some of his friends and their parents.

When I got home, he was in the middle of packing his swimming costume, a towel and some money, bouncing around, beaming from ear to ear. I waved him off, sat at the kitchen table and cried.

Why? MS. Extreme heat intolerance means I will never be able to take him to the beach in the summer. I can’t take him anywhere in this weather. Add constant fatigue on top and I’m a pretty useless parent now. I’m only glad we did a lot together when he was younger, before MS reared it’s ugly head.

I’m trying to stay positive. The flipside to my new working hours is that I am always at home after school. He might only want to say a few words/grunts before raiding the fridge, but I listen. I know all the dramas going on at school, I know what homework he needs to hand in and he knows I’m always there for him.

Finding a new way of parenting with MS has been one of the hardest challenges and one we are still working out together. Gone are the days we jumped in the car on a whim and headed off. Everything is meticulously planned now, with one eye on the weather forecast and energy levels.

Years ago I was told that when you give birth to a child, you also give birth to a lifetime of guilt. What you feed your child, which toys you buy, which school you send them to – all are guilt-laden. Throw in a hefty dose of MS and the guilt skyrockets. I’m failing as an active parent. I can only hope that when he looks back as an adult, my son will not remember the times I didn’t take him to the beach, but will instead feel secure in the knowledge that he was always, always the centre of my world.

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Jul 10 2013
47 Comments
Symptoms and Treatment

Why Is MS So Difficult To Describe?

MS CartoonAs if going through the MS diagnostic process isn’t difficult enough, trying to describe MS symptoms to the uninitiated is even harder.

Take the MS hug. Cute name, excruciatingly painful. The first time this happened to me, I was in the office.

The pain came out of the blue, and as I held my ribs in breathless agony, my colleague politely asked why I was rocking in my chair, making funny gasping noises. After I’d told her it felt like a boa constrictor had wrapped itself round my body, she gave me a curious look and continued typing.

Or the exotically named L’hermitte’s sign. Electric shocks in the neck? Maybe it’s all in my head. Uhthoff’s Phenomenon? Try explaining the torture of frying from the inside out, the complete inability to do anything in the heat. The sadness as you watch the world go by from your window, life happening elsewhere, make-up sliding slowly southwards. Or the tragic look I got from my son the other day when he came home from school to find me with a bag of frozen peas balanced on my head.

Tell anyone else you’re heat intolerant (and it’s even got a fancy name) and you’ll get a barrage of ‘Oooooh, me too! Can’t stand the heat!’ I bore myself silly trying to make them understand it’s not just a case of sitting in the shade with a sunhat on, sipping an icy-cold Pimm’s. It keeps you locked in the house, limbs trembling, industrial-sized fan on full blast. With our current heatwave, even my head is trembling so much I look like a nodding dog. Or a weeble-wobble.

What about neuropathic pain? The constant buzzing, tingling, throbbing, burning in my feet and legs. It’s like having mobile phones strapped to my feet, set to vibrate, with a bit of pincushion-y pain mixed in. Or there’s other days when I can’t feel my feet at all.

But the biggie, as we all know, is the teeth-gnashing frustration of describing MS fatigue. No matter how you explain it to other people, there will always, always be someone who says, ‘Oh, I get tired too. I know exactly what you mean.’ Um, no, you don’t. Now, please run into my fist. I’m too tired to punch you.

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