Tag Archives: fatigue

Jun 07 2013
12 Comments
Daily Life

Party Pooper

you are invitedI have two family gatherings in the next couple of days. I love my family to pieces and adore spending time with them. That’s not the problem. It’s the uninvited guest who always tags along with me that’s giving me palpitations.

MS hisses in my ear, ‘you can’t go, you’ll be too tired, too hot, too tingly, too boring – why don’t you just go back to your sofa, have a nice lie down.’

I am an awkward guest now, like the Mad Aunt everyone knows they have to invite but aren’t quite sure what to do with. Chairs and parasols are rearranged in the garden thanks to heat intolerance, guests look away politely as I spill my drink thanks to dodgy hands and my jokes fall flat as I suddenly can’t remember all-important punchlines thanks to cog fog.

Don’t get me wrong, my family are wonderful, it’s just that MS has driven an invisible wedge between us. Sitting in a dark, shady corner watching everyone else bask in the sun is a metaphor for life with MS.

So, I have some pre-prepared answers ready to lessen the awkwardness and make me appear slightly less tragic:

‘You keep yawning, are we keeping you up?’

– ‘Hell no, was out last night dancing on the tables, fabulous time, wasn’t back til 2 am’

‘Hey, come out into the sun!!’

– ‘S’ok, Vogue said pale is the new tan’

‘Whoops, careful’

– ‘No worries, it takes skill you know, to trip over a flat surface and I’m the champion’

Good plan, no? My family all know I have MS but I don’t really want to belabour the point, and as most of us with MS know, trying to describe the symptoms is not for party-talk, it’s a full-blown maudlin evening over wine, Pringles, low-burning candles and Edith Piaf in the background. And anyway, I feel awkward enough without wanting everyone else to feel the same way too.

So I will try my hardest. I will take part in pass-the-new-baby-around, but perhaps pass him on a little quicker than the others. I will grip my wine glass with two hands, as if I am drinking from a chalice. I will pinch some ice cubes and surreptitiously pop them down my top. Above all, I will attempt to leave my uninvited guest at the door, just for a while….

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May 28 2013
18 Comments
Symptoms and Treatment

MS – A Life Of Opposites

pick-n-mixMS is a bizarre illness – there are hundreds of combinations of symptoms and no one person’s MS is the same as another’s. It’s like an MS pick-n-mix, except MS does the choosing. We just weigh and pay.

What’s most frustrating though is the sheer contradiction in symptoms. One day I’ll have all the windows open, the fan going at full blast, an arctic wind whipping round my feet. The next, I’m chilled to the bone, wrapped in my duvet clutching my hot water bottle.

Or there’s the foot-drop – the days when my feet decide to do an Irish jig and every pavement becomes a minefield, in sharp contrast to other days when my legs are rigid and I walk like a wound-up robot.

On top of that is my old nemesis, MS fatigue, the bane of my life. Striking at any time, it drives me to my sofa, everything else on hold until normal service resumes. So why do I also have periods of extreme insomnia? Nights when I sit downstairs listening to the shipping forecast and World Service into the wee small hours.

It’s not just the physical symptoms – my emotions swing from one extreme to the other too. On Sunday I was feeling on top of the world but on Monday I had one of my gloomy days. Nothing had happened to explain it. Perhaps it is the daily pressure of trying to maintain a normal life while coping with the whole MS thing, who knows?

I’m off to the Hay-on-Wye book festival with friends today, a trip I’ve been looking forward to for months. Apart from the haematoma on my leg which is still as painful as ever, I’m praying that the fatigue also takes a day trip, in the opposite direction. I’m hoping it won’t be a day when I just want to go back to bed, pull my duvet over me and shut out the world.

MS can be a very unsociable illness and not knowing from one day to the next just what it’ll throw at you makes life even more difficult to plan, but for today, I am going out whether MS likes it or not. So if you’re in Hay-on-Wye today and see a chubby-faced woman fast asleep on a deckchair, that’ll be me.

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Apr 20 2013
8 Comments
Symptoms and Treatment

Getting On My Nerves…

special offerIt’s been a stressful week and stress plus MS equals a spike in symptoms.

I have tried everything to stay serene and in control – deep breathing, chocolate, mindfulness, two episodes of Mad Men.

The deep breathing made me feel a bit silly, the chocolate nudged the scales up,  The ‘Power of Now’ was the ‘Power of Not-Right-Now’ and as for Mad Men, well, two episodes are never enough.

For me, it’s mostly an increase in nerve pain. Ever tried describing nerve pain to the uninitiated? Burning, tingling, numbness, crawling, aching doesn’t even begin to cover it.

Tingling sounds delightful, numbness sounds painless, crawling sounds weird and we all ache, don’t we? Just like we all get tired.

It’s been driving me round the twist all week and as always with MS, it doesn’t come alone. It’s the great MS special offer – ‘get one symptom, get three free’. So, as well as the nerve pain, there’s the fatigue, the wonkier walking, the hands that’d be better suited to a Greek taverna. Smashed plates? Yup, as well as my last proper grown up wine glass and yet another chip in yet another bowl.

I lay awake most of last night listening to Izzy miaow loudly. For a tiny cat, she’s got a huge set of lungs. The Teenager got up and shut his door and I was left to ponder the cobwebs on the ceiling and listen to a group of drunk woman sing ‘Simply The Best’ outside my window at 1.30 am. The pain was excruciating and made even more unbearable as my legs started to jerk and twitch.

I wasn’t sure if it was like being possessed by a malevolent spirit (The Exorcist sprang to mind in the wee small hours) or being stretched on a rack. Only problem was, I couldn’t get up and go downstairs as new cat Izzy would think it was perfectly normal to sit in the kitchen listening to the shipping forecast before sunrise. I was trapped and the women outside moved on to a Tom Jones medley, a tortuous backdrop to insane pain.

Action plan for the weekend – rescue ‘The Power of Now’ book from the corner I flung it in to, lie on the sofa with a huge bag of crisps and a relaxing face-pack on and chant, ‘this too shall pass’ over and over and over again…

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Mar 31 2013
4 Comments
Emotions

Cutting Ourselves Some Slack…

The last blog post brought up some interesting comments. I wrote about being too hard on myself for not being able to do everything the same way as pre-MS and it seems I’m not alone in this.

I’ve been carrying on as if everything is the same as before, leading only to anger and frustration when things don’t go according to plan.

Take the other night. The Teenager was away, I was all dressed up in my arty clothes and jewellery ready to hang out in an  arty wine bar with a friend. So far so good. I was feeling on top of the world. I was doing what everyone else takes for granted.

Two small glasses of wine and a couple of slices of caramelised onion  and rocket pizza later, I was ready to swap my flats for slippers and settle down for a night in front of the telly. I went home incredulous at the early hour and sought solace in a family-sized Bubbly chocolate bar, but it did little to assuage my feelings of sadness and anger at being such a lightweight.

Time for a re-think. MS smashes into our lives, obliterating everything in its path. We can go under or resurface, tweaking our lives in new ways.

I may not be able to go out as much, but when I do, I make the effort to hang out with true friends, the ones who’ve stuck by me through it all. I might not be able to (or want to) schlep round the supermarket, but oh, the joys of Waitrose online shopping certainly make up for it.

Housework? Clever lighting and candles hide the dust. Stuck on the sofa, pinned down by MS fatigue? Scrolling through Twitter on my phone, connecting with similar MSers across the world makes me feel far less alone. The Teenager has more of my undivided attention as life has slowed down.

MS makes you reevaluate your life. What is truly important? What will make me happier and more fulfilled? How can I improve my life despite MS?

We are all doing just fine. Most of us are still juggling everyday life as best we can as well as living with a serious neurological illness. We should be proud of ourselves. We got knocked down, but we get back up again. And again.

A big high-five to everyone.

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Feb 05 2013
11 Comments
My Ramblings

Arthouse Bingo

bingo timeThe Teenager was away at the weekend, so I went to an arty cafe/winebar/arts space to pretend to be cultivated, arty and interesting. Hopefully my pale, MS-tired face added to the mystique.

To pass the time and look as if I am writing an angsty novel, I play ‘Arthouse Bingo’. The rules are easy – a point if you can spot each of the following, and if you get to 5, buy yourself another drink:

  • Massively over-sized lampshades, preferably in black.
  • No menus, just a huge blackboard with locally-sourced food, i.e. they went to the local Lidl, bought some salami and Parma ham and slapped it on a slate tile with a couple of sliced gherkins.
  • A higher than average array of beardy men (and some women). Likewise, a higher than average amount of red trousers worn.
  • A minimum of 30 European beers with ‘ironic’ names – the easy way to get intellectually inebriated.
  • Lots of conversations starting with, ‘But is it art?’
  • A tribe of wild-looking children running amok as the parents look on indulgently, ‘Juniper, Hugo and Mabel, darlings, untie Milly and come and eat your asparagus soldiers.’
  • A book-swap corner – a bookcase where you can bring your old tat and swap it for a 1992 Driving Atlas of France.
  • Coffee must be handpicked by an organic wizard in deepest Columbia.
  • Lots of women with flowing hair, strings of hand-made beads and jangly silver bracelets.
  • Old Skool puddings on the menu – spotted dick, apple crumble, custard, etc. Such fun!
  • At least 5 terribly anguished-looking people hunched over MacBooks.
  • If there is a cinema, listen out for, ‘Oh, but I preferred the book, the original Dutch translation.’
  • Everyone speaks very LOUD. No need for music unless there is a visiting harmonica group from Patagonia.

Anyway, I passed a lovely couple of hours, braying loudly, speculating as to whether the huge painting in the bar was art or not. I rattled my beads intelligently and enjoyed my ironic glass of dry white wine. I have past form in these places – as a teenager, I considered myself to be the coolest person ever, standing by the bar, beret on, reading Jean-Paul Sartre and talking utter nonsense.

If I had the nerve (and legs), I would love to turn up in a denim mini-skirt and white stilettos. Only two flaws with that plan – one, I can’t walk in heels and two, the crowd would probably think I was the performance art…….

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