My Double Life

sleepyI live in two very real worlds, and it’s becoming increasingly harder to tell which is which.

I started taking Amantadine a few months ago in a final, desperate attempt to combat crippling fatigue.

You know the type; not the ‘ooh, d’you know, I quite fancy a ten-minute shut-eye’, but the ‘must. lie. down. now. or. else. the. cat. gets. it.’

After a few weeks of, ‘hmmm, is it working or is it me hoping it’s working?’, blam. I was quite suddenly…awake. Which was novel and lovely. I sailed right past the witching hour of 11am, sped past the goblin hour of 1pm and sauntered in a desultory fashion through the demonic hour of 4pm. I was owning this tiredness malarky.

Until, one weird morning. I woke, upset after having had an argument with a good friend the previous evening. Keen to build bridges, I called them;

‘Hey, s’me! Soooo sorry about yesterday! I honestly do like what you’ve done with the bathroom, really I do.’


‘You know, what we were talking about? When I laughed at your tiles? Didn’t mean to, honestly,  chocolate brown with green lotus-thingies is gorgeous. Let me make it up to you.Brunch?’

‘Huh? And what’s wrong with the tiles? You on something?’


Turns out, I didn’t speak to them the evening before at all. I dreamt the whole thing. Not just in Technicolour, but with Panavision, 3-D, total recall Dream-Vision. I could swear it happened. But it didn’t.

I forumed it. Ah. Two strange side effects of Amantadine – lack of appetite (not strange, added bonus, surely?) and vivid, disturbing dreams/nightmares.

Since then, I’ve been ummming and ahhhing. It’s incredible to be wide awake. However, I do now struggle to get up in the morning, not a problem I’ve ever had before. I feel drugged. Which I guess I am. I’m weighing up the pros and cons and am still not sure which way to go. I’ve heard from a lot of people who’ve been driven to abandon the medicine due to the nightmares/parallel universe reality.

I’m going to give it a few more months. Last night, I had a wonderful conversation with The Teenager. We put the world to rights and before he left the room (after a great big bear-hug), he put out the rubbish bags, promised to tidy the bathroom and fed the cat. Yeah, I know. As if?

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The Secret Diary of Stumbling, Age 37 and 3/4

secret diaryI flicked through my MS diary the other day.

Looking back over the heavily-scribbled (and, yes, tear/coffee/wine-stained) pages, it charts my confusion, fear and ignominious entry into a whole new world, complete with a seemingly impenetrable language all of it’s own.

Trusted health websites always advise you to document everything, from the very first inkling that something is wrong – comes in handy for meeting with a Consultant who may just allocate you seven minutes (including an awkward silence when fumbling taking shoes off – will he notice my holey, mismatched socks?), if you’re lucky. And they may  bark random, medically-sounding words at you.

So I did. A bit like swotting up for appearing on Mastermind, with specialist-subject questions fired every 18 seconds. I failed. Miserably. I was sent home with a leaflet about MS fatigue and the MS relapse telephone number. But I didn’t have MS? Confused? Me too. I didn’t understand the ‘multiple’ in multiple sclerosis. D’oh.

One of my first entries, back in June 2011 is, ‘why am I so hot?? Mum thinks it could be an early menopause, grrrrr. Noooooooooo!!!’ Ha! Looking back, that would have been the least of my worries, Tena Lady adventures to one side. And anyhow, I was quite enjoying the flushed-milkmaid visage I seemed to be rocking, after years of hovering just above the ‘palest of the pale Celtic face look’, i.e. close to corpse-like. Or Twilight.

Quite suddenly though, the language gets more technical- I have oligoclonal bands in my CSF, I have lesions in the subcortical, periventricular and deep white matter suggestive of demyelination. I am diagnosed with CIS. Nope, no idea.

According to my diary, I called the MS nurse later that month to ask about the MS hug, an excruciating tightening around my ribs. Normal. What about not being able to write properly? Normal. Pins and needles? Normal. Foot drop. Yup, you’ve guessed it. Over the next few months, I moved from CIS to possible to probable MS, as if I were on an evil, unstoppable conveyor belt.

I called the MS nurse again. Electric shocks in my neck? Normal. Falling over? Normal. Slurred speech? Normal. Stabbing pains? Normal. Wouldn’t it be great to have a pain that wasn’t connected to MS?

May 2012. My last relapse. My hands. Of all things. Crockery was smashed left, right and centre, my mum bought me plastic tumblers and my friends had enormous fun cheering me as I dropped things without warning. And all along, the excruciating, tedious, soul-destroying fatigue.

Late May 2012. Diagnosed. At last. An absolute dichotomy. Utter relief mixed with utter terror. The diary’s closed now. I keep my new notes elsewhere. Thanks to cog-fog though, I haven’t a clue where they are…

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Older. Not Wiser.

older. not wiserI clung on as long as I possibly could.

On my birthday last week, I loudly proclaimed that, actually, actually, I wasn’t technically 41 until 8.04pm, so basked in the fading glow of my 40th year for most of the day.

I had a leisurely morning, a leisurely lunch with my mum and a leisurely evening with a friend. Very leisurely.

Anyway, after blowing out my candle (singular – I’m now too old to merit one per year) and making a desperate wish (nope, not telling), I scribbled a list of everything I would might achieve over the next twelve months, now I was of a Grand Old Age:

  • I will create a Capsule Wardrobe. A classic trench-coat, several well-cut pairs of trousers and a few silk blouses that hang just so. Plus some select pieces of discreet, yet classy jewellery and a couple of well-chosen scarves, which I would learn how to tie in many different ways, like all the French woman do.
  • Likewise, I would ditch the student wardrobe I’ve been cultivating for the last few decades. I would consign my ‘It’s Your Round’ t-shirt to the charity shop pile, along with my Gap hoodie, washed so many times, it’s faded from bright green to vomity-puce.
  • I will begin a proper skincare regime, with different creams for different parts and different times of the day. Day cream, night cream, afternoon cream, eye cream, neck cream, ear cream and hand cream. I would be slathered.
  • I will consider a National Trust membership, which will give me unlimited access to three thousand sites, ensuring a delightful day out every weekend for the next two hundred years. I will not go straight to the gift shop/ye olde cafe; I will instead join a guided tour and follow the held-aloft umbrella with all the other tourists. However, I will still buy a jar of honey/jam from the gift shop before leaving.
  • I will learn how to cook and love risotto. And a proper Sunday lunch, rather than going for a Carvery, along with a twenty-deep queue of other people. Who nick all the roasties before my turn. And steal all the gravy, tsk.
  • I will no longer hide the fact I highlight TV programmes I want to watch in the Radio Times, with my special fluorescent pen.
  • I may invest in a foot-spa. And one of those things that makes your bath ripple like a jacuzzi.

Yup, I have a plan. I already feel older than my years with this pesky MS – the cog fog, the pavement-watching, the dozing off in front of the telly. Should I embrace it?

Thinking about it, maybe I shouldn’t. I’ve just had a letter from the university I’ll be joining in September. A lovely invitation to Fresher’s Week. Really. Should I stay or should I go?

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You Can’t See The Stars When You’re Staring At The Ground

hunchbackMS is seriously turning me into a hunchback.

Over the last few years, I seem to have acquired rounded shoulders, and when I walk I automatically stare dolefully downwards, using my expert laser vision to scan for potential slips, trip-ups and mishaps.

I only really noticed this when my trainer asked me to put my shoulders back and look straight ahead. Oh, really?  Ohhhhhhh – kaaaay. Creak. Creak. Oh. Blimey. Hey! I’m six inches taller. Hey, I have a proper posture. Like in the magazines. S’mazing.

I used to strut. After years of being taller than your average British female (a not-that tall 5′ 8″), proudly sashaying along any pavement in high-heeled Italian boots, cobblestones no problem, I am now one of those people I used to cross the road to avoid. I mutter to myself, eyes fixed to the ground. ‘Meh, see! Told you, blinking stoopid pavement. Tut. Yada, yada, council, etc.’

In the three years since MS barged into my life, I have not walked tall. At all (lol). My shoulders are my shield, the pavements my enemy. I can literally (and I don’t use that term lightly), trip over dust. My shoes are all scuffed, bearing the brunt of my clownish walking.

But. Something magical happened when the trainer told me to stand up straight (in a very nice way). It was almost like a sixth-form A Level English Language metaphor – ‘after three years of looking downwards, she finally faced the world head on – indicative of how she was able to now walk tall, walk proud, defying the world she had unwittingly constructed.’ Discuss

You know what? There’s definitely something in that. I was so busy seeking out obstacles on the ground, I missed the beautiful vistas passing me by. I tuned out the white noise of my friends’ concern. I was totally focused on putting one foot in front of the other. Simple, no?

Well, no. I missed so much. I didn’t take the time to breathe, look up and be thankful I was still here, still in one (albeit shaky) piece. My head was buried in the sand. Friends peeled away. Life atrophied. The pity parties multiplied.

I hope that, along with torturing me with endless squats, the trainer has given me the space to hold my head up high once again. What’d I miss?

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Just Gimme The Cake (And No-One Gets Hurt)

41 and countingIt’s almost that time of the year again – whisper – hint – one more candle?

Yup, even before I’ve recovered from my 40th birthday (or to put it more starkly, the first year of my fifth decade), my 41st rolls round in less than two weeks.  Wouldn’t you know.

I’m at the very great age now that people start putting fewer candles on my cake, not more, i.e. four rather than forty. Perhaps making up the deficit with an indoor sparkler. Fire hazard? Sparing my feelings? Or just cheapskates?

And not only that, my cute, bonny wee baby turns FIFTEEN a mere week later, the effrontery. He was actually due before my birthday in 1999, but was so lazy he decided to doze off and hang around a bit longer before tidying his ‘room’, a portent of what was to come.

Anyway, with the onset of August, and the inevitable countdown to Christmas (grrr), it’s time for me to gaze at my naval once more. I do a lot of that. It doesn’t get me very far, but at least I’m seen to be trying.

So what do I wish for this birthday? Looking back at all those fruitless wishes of yesteryear (My Little Pony with the lightning strike, Cabbage Patch Doll twins, Fuzzy Felts At The Zoo), I won’t be getting my hopes up.

There are a few reasons for this:

  • I pretty much have all I could possibly want. My joy was complete when I brought my new bread-maker home a few days ago. And my new set of ceramic pans arrived this afternoon. Bliss.
  • I am grateful for all I have. Even when I hold my breath on entering The Teenager’s Lair. I’ve just been up to check – four plates, three forks (should I be worried?), a pyramid of coke cans on his windowsill, a pile of GCSE revision books stuffed into the corner and a pair of swimming trunks on the floor.
  • I have to save all my angst and energy for September, when I start my MA. I am now fully enrolled and fully scaring myself silly.
  • After it threw that curve-ball of vertigo at me a few weeks ago, MS seems to be on half-days for the summer. It won’t last, but I can pretend.
  • It’s raining. Hallay-loo-ya. Goodbye hot weather, heeeeellllllooooooo cool breezes and rain. Lots of it. Uthoff’s, begone.

Before The Official Date, I am chillaxing (ooh, get me), in the knowledge that this month will be Cake Month. Oh, and the next. It’ll be my two year Blogging Anniversary. How did that happen?

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