Oct 21 2014
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Symptoms and Treatment

MS Never Sleeps

knackeredThere was me, down to no afternoon sleep, dropping off to Loose Women, no slumping over books.

I had ENERGY, the MS currency of choice.

Yup, it had to end, and boy, it did.

On the one hand, the pesky thyroid was a gift from above.

I had an obscene abundance of energy. I am ashamed to admit I cleaned round my taps with dental floss and vacuumed my house to within an inch of its life. Dust was banished.

On the other, I ended up in hospital. On Sunday, my mum took one look at me and called a taxi, ‘um my daughter can’t stop moving and shaking, no it’s not drugs, um, apart from Amantadine, but no, it’s not speed, and she won’t throw up in the cab’.

So I spent the next five hours staring at a lovely man who had no idea where he was. I cried. He was wheeled away and I stayed in limbo, with a cannula in my hand and a difficulty talking to the Doctors children who were looking after me. Plus I had an ID band around my wrist. In case I forgot who I was.

They wanted me to stay in overnight but as much as I was tempted by the gruel they serve for breakfast, I demurred. I had to get home. A nurse gave me beta blockers. Sigh. Divine. The trembling stopped and I could breathe again.

At 1.30am, I went back home and sank into my bed. Today, I had an appointment with the GP. Thyroid meds – These will help, but if you get an infection, you have to get a blood test straight away.EVEN if it’s the weekend. Meh.

I was quite happy, just checking in twice a year with the MS team. Now I have to see an endocrinologist, have more blood tests, see the GP on a fortnightly basis. But if it’s the same endocrinologist as before, I’m looking forward to hearing his Italian dulcet tones.

There has to be some recompense, no?

p.s. I had to miss book club too…

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Oct 17 2014
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Symptoms and Treatment

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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Oct 07 2014
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Daily Life

Drowning, Not Waving

DunceOh dearie, dearie me. Oh my.

I started the Masters course in Creative Writing last week. How hard could it possibly be? I love reading. I love writing. Simple?

Er, no. I am a fish out of water. Or prawn. Squid?

It started so well. I made my way to induction, swimming and elbowing against the tide of children headed for the canteen. They were very, very young and I felt very, very old. Mumsy. Grey. Got my ID card. The woman who took my photo said, ‘you can smile you know love, it’s not Crimewatch.’

I grimaced, picked up my card and joined the young folk in the classroom. And I loved it – learning something new. Filled with enthusiasm, the first lecture loomed. Wasn’t too bad, took notes, swotted up. Then a different lecture about research. Without warning, the tutor switched to Swahili and the four hours passed in a blur of ‘why am I here, what am I doing and when will they unmask me and chuck me out?’

Then, the first writing assignment. I knew I could do this. I’ve been writing a form of flash fiction for two years with this blog, each post around 400 words but (hopefully) conveying so much more. I was chuffed with my effort, slaved over it, rewrote it, obsessed about it.

Let’s just say, I Don’t Get It. I am panicking. I wrote a terrible story. I adore my course, I love the research. I just don’t think I have what it takes.

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Sep 21 2014
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Daily Life

Wot I Did On My Holidays…

holidays 2…or rather, wot I didn’t do.

Every summer, I scribble down a long list of all the mind-expanding cultural and educational activities I will partake in.

Amongst others, I will endeavour to:

  • sign up for a three-day pottery course, throwing (literally) eclectic pots and wonky vases
  • pack a posh picnic, cunningly cultivated from the best of Lidl, and recline elegantly on the grass in the park, listening to live music
  • leave my hair unwashed for a week and watch the sunrise at Stonehenge on the longest day of the year
  • endure watch lots of subtitled films at the local arts cinema and be able to take part in the pretentious lively discussion afterwards
  • visit a food fair and pay triple for a lump of grotty cheese, but feel rather virtuous at the same time

You get the idea. That list is now in the bin. The closest I got to anything cultural was to buy one of those jumbo-CD packs of classical music from the local charity shop to listen to in the car, realising too late that one disc would stick forever on Chopin’s piano concerto No. 2 in F minor, 2nd movement.

Instead, I worked a lot. Despite numerous pleas to the Teenager such as, ‘C’mon, come on a day trip with your old mum, we’ll have fun! We’ll pack a Thermos and buy a tin of pear drops’, he refused to budge, preferring instead to play football with his friends every day, even though he’s in a rugby team. Kids.

For my birthday, The Teenager bought me an iTunes card and slowly, very slowly, explained how to redeem it. He recommended several memory apps and another one that pings when it’s time to take your medicine. In return, I stopped his pocket money.

The highlight though, must be GCSE results day, which happened to fall on The Teenager’s birthday. I plied him with an All-You-Can-Eat-And-Then-Some-Breakfast buffet at the Toby Inn (only £3.99, but mushrooms -bizarrely – is there a shortage? – and drinks are extra).

Anyway, he refused to pick up his results, as he didn’t want to ruin his birthday. I drove past his school twelve times, pointing out all the happy kids clutching bits of paper, driving swiftly past the crying girls on their mobiles, but still, nope. He wouldn’t go. So I did what any good parent would do and collected them myself. Bit embarrassing. Had to show ID, sign a form, swear allegiance to the examining board and explain in less than 100 words why The Teenager wasn’t there himself.

I passed. And, brilliantly, so did The Teenager. Highest marks possible. I drove back home and opened the door to The Teenager pacing the room, biting what was left of his nails. I put on my best sad face, wiped a tear away and gave him The Look.

‘Hah! Gotcha. You’re a star!’

Stunned silence,then he ran towards me for a huge hug before launching into a whirlwind of social media. And that, in a nutshell, was my summer. Fleeting but, um, memorable. Next year, I’m taking a caravan in Tenby.

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Sep 02 2014
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Symptoms and Treatment

Dim? Some.

Memory, what memoryI was with the boss one morning last week; we were driving to a warehouse to buy something or other for our latest project.

He pointed towards the humungous Tesco Extra on our left, saying, ‘it’s been refurbished, there’s a Costa there now too.’

‘Oh, um, great! Must check it out, but you know my heart lies with Ocado.’

We got the something or other from the warehouse, loaded the van up and drove away.

‘Hey, boss! Did’ya know that Tesco’s has had some kind of makeover. Someone told me. And Costa’s has opened. That one, over there.’

Silence.

Then, ‘are you winding me up?’

‘Nope, boss. Just know you love your Costa coffee with the caramel swirly thing.’

‘Yeeeeeees (very, very, slowly), but ten minutes ago I told you about it. You’re freaking me out.’

‘Oh.’

‘Your memory, honestly’ – then all I heard was the word ‘dim’.

‘Oi! I’m not dim. I won a medal once. For badminton.’

‘Noooooooooooo (very, very, slowly), I said you’re like a dimmer switch. Sometimes very bright but other times, you know, dimmer. More dim. No, not dim. Just not as bright. But not dim as such. You know what I mean.’

*sulks all the way to the meeting with the architect*

But, he had a point. My memory over the last six weeks has been atrocious. Embarrassingly so. I asked my mum, ‘I know I’m ancient now, but was your memory this bad when you were 41?’

Mums are a polite bunch, aren’t they? ‘Well, dear, we’re all different. We all have strengths and weaknesses. We all find our unique place in the world. But yes, your memory is dire.’

The Teenager plays on this – ‘But you said, you said I could have a Dominos. Is your memory playing up again? Don’t forget you said we could get a dog. AND, remember that £20 I owe you? I’m so happy I paid you back’ (he didn’t. I know this for a fact). Nice try.

Anyway, on the one hand, it’s a great cop-out (pesky MS cog fog), but on the other, I am liable to be hoodwinked on a regular basis, plus I just can’t remember anything important. I have to write everything down, to the point that when I walk through my house, I’m accosted by a forest of post-it notes. Which I can’t remember writing. What does ‘T-hhhhhhh!! CJ R’ even mean?

And as for Costa Coffee. I haven’t been yet. Did I tell you they opened one in my local Tesco Extra?

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