Tag Archives: MS fatigue

Our New Addition …

Bronte2I couldn’t help myself. I was (and still am) deep in mourning after my beloved cat Dora was knocked down and killed recently.

I shouldn’t have looked at the cats seeking their ‘forever home’. Their big, pleading eyes, their sad stories, their heart-wrenching starts in life.

So we now have a new addition to our little family – Brontë. Quick explanation about the somewhat pretentious name: she arrived with the name ‘Bronwen’, and, much as I love Welsh names, it seemed a bit of an odd choice for a tiny kitten, not even six months old.

She wouldn’t answer to my new choice of name, ‘Flump’ nor The Teenager’s, ‘Pancake’ or ‘Dog’. We tried out ‘Batwoman’ and ‘Kerpow’ (check out her Bat Mask), to no avail. So she became ‘Bronnie’ until one evening I called her ‘Bronty’ by mistake and she came trotting over. Result. Being of a literary persuasion (lol), she is now named after one of my favourite authors.

Anyway, she has settled in remarkably well, so well that she enjoys nothing more than scampering up my curtains and sitting on the wooden pole, grinning down at me. She also tears around the house in an endless loop and can make a toy out of anything – she’s smitten with my hair bands and has fished out seventeen of them from a bowl in my bedrooom (I counted) and laid them all on one of my rugs in an impressive pattern and every so often she returns to rearrange them.

In short, she fits in well. She’s also great to snuggle up with when the dreaded mid-afternoon MS crash happens. We mute the telly and radio, choose our blanket and flop onto the sofa.

Plus, she adores The Teenager and he’s in awe of her acrobatics (and her fondness for squatting in my larger plants before I can chase her off), although she is now banned from his bedroom after she stole his expensive headphones.

She may be hard work right now, but I wouldn’t be without her. A bit like The Teenager …

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Life Sure Ain’t Like The Movies…

popcornA funny thing happened the other day.

I was lying on the sofa reading a book, plucking Maltesers from a box I’d craftily hidden from The Teenager.

The next thing I knew I had woken with a start, the book (and Maltesers) having crashed to the floor.

This may sound boringly insignificant, but I thought stuff like that only happened in movies for dramatic effect – just like you can see the Eiffel Tower from any window in Paris.

I ranted to the cat after she’d stopped chasing the Maltesers round the floor – how could anyone fall asleep so quickly that they couldn’t put their book down first?

Either explanation is most unpalatable:

a) old age creeping up on me

b) worsening MS fatigue

Mind you, if my life were a movie, there would be a conveniently-placed handsome man who would gently prise the book from my fingers, wrap me in a cashmere blanket and gaze upon my slumbering face before dimming the lights and nestling another log on the open fire.

Furthermore, kindly neighbours would have left a pile of casseroles and lasagnas outside my door during my worst relapses two years ago. They would also have surprised me by putting up my Christmas tree and arranging for an angelic choir to sing carols outside my door, snow falling softly.

On recovery, I would magically spring the money to spend a month somewhere exotic to ‘find myself’. There would be shots of me wandering sadly down golden-sand beaches. Towards the end however, I would be laughing and learning important, life-affirming lessons from the wise natives, arriving back home with a new-found sense of purpose in life.

But life isn’t like the movies. When I woke and found my book and chocolates on the floor, I was cold, I hadn’t started dinner and I found The Teenager hanging off an open fridge door bemoaning the lack of junk food (‘everyone else in school gets to have it, why not me, you meanie? What am I supposed to do with a tangerine?’).

I explained to him what had happened. He was unperturbed (‘mum, you’re, like, old, you know? It’s what old people do, my grandad does it all the time’).

Out of interest, I asked him what he would like to see come true from the movies. He didn’t hesitate – ‘one of those huuuuuuuge American fridges crammed with junk food and my own den in the basement  and……(I stopped listening after five minutes)……

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I’m Not Failing, I’m Sleeping…

sleep tightI had one of those earth-shattering, life-changing  moments of clarity the other day.

I closed my eyes at 10am, just to have a quick cat nap.

Two hours later, I woke up. I was incensed, maddened by the sheer waste of time and looked with dismay at my unaccomplished ‘To Do’ list.

As I stumbled into the kitchen to make a cup of strong coffee, tripping over the cat (she’s tiny but deadly), I stopped in my tracks. MS fatigue. I expect everyone else to take me seriously about how debilitating it can be, how much of a real symptom it is. And yet… I don’t.

Instead, I see it as a major inconvenience, something to be tolerated if I am to get through the day intact. It’s a distraction, holding me back from my real life. Or is it? I take my other MS symptoms seriously and factor them in, so why don’t I do the same with my most significant symptom, fatigue?

Over the last two years, I have railed against the pointlessness of all this sleep. I flounce to my sofa in anger, utterly fed up at yet another hour passing me by with absolutely nothing achieved. This had to change.

Rather than getting angry, I am now going to start respecting this fatigue, just as I accept that nerve pain, foot drop and stumbling are part of my life now. I can’t change it, so I will accord it the same respect. The fatigue is my body’s way of telling me to slow down, my brain needs a rest. I will view it as a valid symptom, not a major annoyance.

I tried out this new way of thinking yesterday. I had some things to do in the morning, and could feel the fatigue creeping up. Back home, my brain shut down. The To Do list was put to one side, I got my duvet out and fell asleep. I woke up feeling better, accepting that this is my life now. I can’t change it, but I can change how I approach it. I can absorb it into my life or I can go on forever feeling angry and a failure.

And you know what? I feel that in some way I have made peace with myself. I’m not failing any more.

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The Mallet Theory

the mallet theory 2When I first mentioned my Mallet Theory in a previous post, it drew a great response from you guys, so here is the full, unabridged version.

Ok, so most of us have heard about the Spoon Theory, and whilst I like it, I find it a little bit…..gentle? Spoons are such handy little things. Unoffensive.

You explain to your friends and family that with MS, you have a set amount of energy in one day, represented by a number of spoons, and you give one or more away depending upon how much energy you’ve used. When they’re gone, they’re gone.

Me? I prefer the Mallet Theory. MS fatigue isn’t gentle. It’s a whack across the head by a mind-numbing, poleaxing, utterly devastating Mallet of Fatigue. So, say you start the day with ten mallets. You chuck one away (if you have the energy) every time you feel this crushing tiredness and if you’re left with any at the end of the day, it’s been a good one.

Unfortunately, you can’t carry any over into the next day. MS is cunning like that – you start each day right back at the beginning. There’s no saving them up, which is kind of hard to explain to other people. They might helpfully suggest, ‘oh, if you have a sleep now, you can go out later.’ You don’t get to choose when to sleep, you’re compelled to. I’ve had mornings when I wake up bright and breezy at 7am, and am zonked out on my sofa by 10am.

I’d like to expand this theory by allowing people with MS a second set of mallets per day, and here’s where it gets exciting. This second set can be used for when people say something totally ridiculous to you. Something along the lines of , ‘you’re still drinking Diet Coke? Don’t you know that probably caused your MS?’ or ‘wish I could sleep as much as you’. Yeah, right. Have this mallet over your head, you annoying person, you.

Obviously I’m not advocating actual violence, no matter how much you may be tempted. This is purely metaphorical. Since incorporating this theory into my life, I’ve had hours of fun. So, pass the theory on – anything to do with MS that can raise a smile can’t be bad.


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Haematoma Blues (And Purples, And Reds…)

haematoma bluesMy magnificent bruising has been reclassified as a haematoma, which probably explains why I’m still hobbling around almost two weeks since my accident.

I was lucky enough to see one of our fabulous MS nurses at the Work and MS conference on Saturday and during a coffee break, I rolled my jeans down in the loos to show her the injury.

She carefully examined it and suggested I take myself off to Accident and Emergency to have it scanned in case there was an underlying fracture.

To cut a long story short, my mum took me that evening and the good news is, it’s just a haematoma, not a fracture. The bad news is, the only thing I can do is wait for the swelling to go down. It’s not going anywhere fast and neither am I. The pace of my life wasn’t particularly speedy before (take a bow, MS fatigue and foot drop) but has now slowed to a virtual stop.

I’ve been told to keep my leg elevated as much as possible, so needing no excuse to lie down and fill my brain with trashy tv when I should be slaving over an essay, my sofa is now almost permanently in use, much to the chagrin of the cat.

The Teenager marvels at my ‘cushy’ life and prods the lump on my leg in wonder. He’s very much enjoying visiting friends for tea after school and has perfected his sad face when talking to their parents, ‘oh, my mum’s dreadfully ill, she’s got this massive  thing on her leg, the size of a rugby ball, honestly, she can barely speak, it’s that bad’ before gratefully accepting yet another chocolate roll or can of Coke.

I’m sure I’ll be back on my feet soon enough and will no doubt look back wistfully on my weeks at home when I go back to work.  But I do miss the banter and bacon rolls and even my nickname, ‘Half-Shift’…

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