Category Archives: Symptoms and Treatment

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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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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Aug 27 2014
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Symptoms and Treatment

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.’

‘Huh?’

‘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?’

Oh.

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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Jul 22 2014
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Symptoms and Treatment

NO, *SIGH* I’M NOT DRUNK

Mother's RuinVertigo. Vile, evil vertigo: ‘a sensation of whirling and loss of balance’ according to my dictionary.

There’s two reasons you’ll get no sympathy for sharing this MS symptom with anyone else.

First, if you say, ‘ooh, me vertigo’s playing up something awful today’ as you fumble blindly for something to hold on to, you’ll inevitably hear, ‘oh yeah, I hate heights too.’ (Grrr).

Or they’ll say, ‘ha! Thought it was wine o’ clock and you’d already started on the Mother’s Ruin’ followed by them imitating your rolling gait in a totally exaggerated fashion.

This happened to me a couple of days ago and my ‘audience’ was non other than The Teenager, so I kind of expected just a tiny bit of concern on his part. Not a bit of it.

I was helping him to pack his bag for London, i.e. I was holding up clothes for his Romanesque thumbs up or down.

(Looks up from his phone for a nanosecond – snort, snigger) ‘Muuuuuuum, I know I’m going away for a week but did you have to start the celebrations early? Like, really?’ (imitates my rolling gait).

I did my best to explain in a non-worrying manner, playing it down, good parent that I am, trying to move ever so slowly so I didn’t fall flat on my face.

‘Vertigo? Yeah, I get that too. Dad took me up The Gherkin in London and I was like, woah, bit scary. But I didn’t look like you do. And I got some sick (sic) photos.’

After waving my little cherub off to the bus-stop I sank onto the sofa. The world stopped moving for a while, if I closed my eyes. But then I felt sick. My phone went.

‘Muuuuuuuum. You know when I get back next week, seeing as you’ll have missed me, can I have a Domino’s? Pleeeeeeeaaaaaase?’

‘Sweetheart, you’ve been gone all of three minutes. We’ll talk about it later.’

‘Meanie.’

The rest of my first evening of child-freeness was spent attempting to walk the length of my house without veering off to one side. The world didn’t stop moving. Everything was spinning faster than I could walk. I gave up and went to bed early, mega early.

The next morning, I woke up to a panicked message from a friend, saying she couldn’t get hold of me last night and was worried. I explained I’d gone to bed with vertigo at 8-ish and had put my phone on silent.

‘Oh yeah, I hate heights too. What were you doing? Rock climbing?’

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