Tag Archives: energy

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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24 Little Hours

cocktailsMost mornings I wake up with some kind of energy. And the kitten playing pat-a-cake on my face.

I could use this energy to prepare and cook dinner from scratch with exotic ingredients, meet up with long-neglected friends, catch up on my emails, try out a new must-visit cafe in town, browse around a second-hand book-shop and schlep around Ikea.

All finished off with a cocktail served in a jam-jar in some dark, obscure wine bar.

Sadly, life doesn’t work like that. My ever-so-limited energy is always in the morning, my slump is post-2pm. Just ask the boss. He can set his watch by me as I stumble around, packing away my lunch box and folding my newspaper, yawning conspicuously.

As soon as I wake up, it’s as if a little switch is flipped; time starts ticking away and I race pointlessly against it.

Reverse my ideal day back to reality and I will throw together a quick dinner (fish fingers, spag bol, fish fingers, Dominos), neglect my friends, feel guilty about my emails, never visit that new cafe (probably closed down by the time I even think about going), order books online and dream of a double serving of meatballs in the Ikea cafe. All finished off with a cup of tea and a nice sit down on my sofa.

Over my morning coffee, after feeding and depositing the kitten outside, I scan my to-do lists (plural). Yup, can do that, tick. Ok, can do that, tick. Put some laundry in, pack six pieces of fruit in Teenager’s school bag (lol), take out recycling. I have a Plan for After-Work.

After Work, I get home, feed and deposit the kitten outside, slump, scan to-do lists, laugh ironically and feel a little bit pathetic. I weigh up fish fingers versus spag bol. I change the loo roll and feel mightily proactive. I sit at my kitchen table and hoover in a circle around me, wishing I could move a little further.

So many hours and so little energy to fill them with. I watch the clouds pass by from my sofa-vantage-point. Pretty. I am being Mindful. I pick up and put down a book (it’s more than 200 pages). Flick through a magazine. Too much information. Turn on the telly. Pat the cat. Shout upstairs, telling The Teenager to turn down his music. Wonder what that odd smell is. Burning fish fingers and I haven’t even put the beans on yet.

For now, my days continue to be upside-down. Do you think it would be odd to host a dinner party at 9.30am? (Asking for a friend).

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Boing Boing

boingAn abundance of energy is an elusive pipe dream for someone with MS. A month or so ago, I would have traded my cat’s soul for just a pinch of the wonder stuff (sorry, Dora).

I should be more careful what I wish for. My thyroid has decided to go bonkers, a result of the Alemtuzumab treatment and I am bouncing off the walls like a demented bouncy ball.

I’m averaging around 4 hours of sleep a night, and most of that is disturbed, as I lie there counting the spiders on the ceiling.

However, always one to look on the bright side, I am squealing with unadulterated pleasure at being able to fit into my skinny jeans, once relegated to a dark cupboard, stained with tears. The weight loss is nothing short of a miracle and before I start the thyroid medicine, I am savouring every moment. I can’t pass a mirror or shiny surface without pausing and turning this way and that, buzzing with delight.

I have lost my appetite. No, really! I pass on the donuts, the Wotsits and even my beloved bacon butties and instead nibble on toast or Brazil nuts.

Another upside is stamina when it comes to the Masters. My third attempt at flash fiction was fabulous (IMHO). The words flowed, no editing necessary. At 3am I emailed it over to my tutor, sat back with a sigh and caught up with Jerry Springer. I am speeding through my research books for my first essay, post-it notes flying, fluorescent pen whizzing along the pages. I am a demon. I can’t keep up with myself.

The house is sparkling and my cordless vacuum is on constant recharge, just like me. I concoct marvelous meals, ready for The Teenager to diss and put to one side before he whips out a Domino’s menu and a sad face.

I can’t keep still, my legs tremble and jig endlessly. I bump in to walls, trip down the stairs and am nurturing an impressive collection of bruises.

It won’t last. It can’t. I am burning out, ready for the inevitable crash. I am scared of going back to the bad old days when I sleep in the afternoon and nod off during Downton Abbey.

I go back to the doctor on Tuesday when she will put a stop to my fun with meds. The clock starts now and in no time at all, I will be waiting for the sad ping of ready meals and ignoring the dust. Until then, I will handcraft some candles for Christmas presents, paint the walls and clean the taps with a toothpick. And dust the lampshades, organise my food cupboards, carve a pumpkin, re-pot my plants……before it’s too late.

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Toilet Humour

I spent most of yesterday sitting on a toilet in work. Ok, it was unplumbed, yet strangely comfortable. We are in the middle of fitting two bathrooms and ran into some problems, so a lot of the time we were hanging around discussing how best to fit the pipes.

This was quite handy as I had yet another one of those out-of-the-blue MS crashing waves of tiredness and wasn’t fit for much else, bar a gentle spot of sweeping up, resting my elbows now and again on the handle, head to one side.

Typically, I was full of energy the day before, and was whizzing round the shops with my mum, stocking up on sausages, body spray (an absolute essential  for building work) and printer ink.

And that’s the really annoying thing about MS – the sheer unpredictability of it. It’s just so darned inconsiderate. MS has appalling manners. There’s no point booking anything in advance as you haven’t got the foggiest clue how you’ll feel on the day. My most common phrase is, ‘can I let you know?’

If I arrange to meet a friend for coffee, I pray the night before that I will wake up with some energy. I can’t remember the last time I went out with friends on a Friday night and at our age, it’s so hard to do anything spontaneously, when I do have the energy – babysitting, work, lack of money, can’t be bothered, etc.

So yesterday, the wave hit me around midday and I could pretty much write off the rest the day. I know the score. Get home, rustle up some dinner for The Teenager, quickly wash the dishes and lie on the sofa for the evening. Boring. If I’m lucky, I’ll have a few magic pockets of energy where I’ll suddenly leap from the sofa and dash round the house doing as much as possible in the least amount of time before crashing again.

Anyway, this job should be wrapped up by early next week, then it’s on to the next one. Variety is the spice of life, and at least I now know how to plumb a toilet….


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I’m Still Going…

Well, this is fabulous. The energy levels are holding up and I feel on top of the world. A lot of my ongoing symptoms seem to be disappearing too, except for the numb left arm. But hey, I still have the other one.

The only drawback is that I woke up ultra early. Even the cat didn’t come downstairs for another hour, it was that early. After getting nothing done the day before,  I whizzed through a couple of hours of work, put a load of laundry on, plumped up the sofa cushions, rearranged the food cupboards and watered the plants. At 7am I woke The Teenager with a cheery yell but judging by the grunts coming from under the duvet, he wasn’t feeling quite as awake as I was.

But the sun is shining and I looked back on my recent fatigue with a shudder. You don’t realise just how awful it is until it’s over. So tedious, so mind-numbingly boring and so depressing. I know this might not last though, so I am laying down plans for how to cope the next time the fatigue juggernaut rolls around:

The sofa becomes the centre of operation. Therefore it is vital to have everything within easy reach. It’s amazing just how much you can get done whilst lying down – emails, paperwork, phone calls, Twitter. Must make sure I have remote control to hand, that there’s a good stack of programmes on Sky Planner (nothing too taxing – Come Dine With Me, Escape to the Country and America’s Next Top Model), a couple of magazines and a generous supply of snacks.

With a bit of luck, you can also socialise from your sofa. Invite a friend over and casually suggest they swing by the takeaway. If you’ve got a teensy bit of energy but not enough to go out on a Friday night,  have a friend over for a bottle of wine. Stay on the sofa, but prop yourself up (you don’t want to seem rude). When they leave, just slide back down and resume resting position.


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