Category Archives: Symptoms and Treatment

Feb 22 2015
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Symptoms and Treatment

Floating In A Most Peculiar Way

FloatingI had a consultation with my fabulous neurologist last month and we got round to discussing meds.

When the bullying started at work, I began a low-ish dose of anti-depressants (Citalopram) and they helped a lot. They got me through everything, including the legal case that followed and coming to terms with my diagnosis.

Two years down the line, I wanted to come off them as life is much, much better now, brilliant in fact, but was worried about how I’d feel. Would the pity-parties-for-one return with a vengeance? Would my Wotsit consumption multiply?

At the same time, the nerve pain in my legs and feet has increased and we discussed upping my Pregabalin dose. Luckily, Pregabalin can also be used for anxiety, so coming off the Citalopram could be a lot easier.

I then saw my GP who recommended decreasing the Citalopram gradually, i.e. moving to alternate days before cutting out completely. Sounded good?

Well, after a week I felt like death warmed up; inexplicably unmotivated, fed up, grumpy. I got worried.

Guess what? MS cog fog strikes again – I have a meds box I fill every week as I can’t be doing with faffing about with packets of pills every day. I diligently cut down the dose and popped one in the box every other day, completely forgetting I took two a day. So I basically reduced my dose by 75% overnight.

Anyway, I started the increased of Pregabalin yesterday and I don’t know if it’s psychological, but already the nerve pain has dropped dramatically. It is bliss. Unfortunately, they also made me float away quite alarmingly and lose track of where my feet where.

I went on a shopping trip with my mum. We wandered around, chatting, catching up until she said,

‘You ok dear? You seem a bit, um, odd. You’re walking funny.’

‘I’m floating! Floating. Feels kind of nice. Whoops. I meant to bump into that flower display you know. And the loo-roll pyramid.’

‘Quick, take my arm, there’s a small child in your way and you’re stumbling all over the place.’

The toddler, who was splayed on the floor, crying and drumming his feet was saved by my mum’s speedy actions. I waved at him and smiled, recalling The Teenager doing the exact same thing not so long ago.

When I got home with my shopping (a framed black-and-white picture of some empty park benches, a couple of books, a bowl and a fridge magnet), I gently bobbed on to the sofa and nodded off.

Cutting out the Citalopram is like severing the final link to a horrendous 2012 – it feels empowering. As for the floaty feeling, it’s still with me, but I’m sure it’ll settle down in the next couple of days, but for now, it’s a cushion, and it’s rather nice.

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Dec 13 2014
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Symptoms and Treatment

What’s MS Like?

movingHmm. As they say, every person with MS has a unique set of symptoms, so no two are alike.

However, I get asked a lot, ‘what does it feel like to have MS?’.

Quite possibly the hardest question ever.

Imagine this: you wake up every morning, flex your hands, feet, arms, before stumbling out of bed.

What works?  What doesn’t? You find your phone. And drop it. Curse. Paw the carpet to find phone then trip over shoes, falling into the landing and ending up face down in the laundry basket.

Sway downstairs, knocking into the bannister. Weave your way to the kitchen. Coffee. Think about a shower. The pitfalls. Take a deep breath. Teenager has used your expensive shampoo. Again,

Consider nodding off at kitchen table. Sort lunch money, blazer, Teenage Tantrums, lost paperwork. Head to work.

Fall asleep in van. Yawn a lot. Mix up numbers, measurements, tiles. Find a quiet corner.

Back home, dread cooking a meal and dream about a private chef. Make meal, clean up, ignore leg pain, can’t ignore hands, drop everything. Clean kitchen floor, badly.

Essentially, MS is a surprise. Who knows what I’ll wake up to? It could be tripping, falling, stumbling, umming or ahhhing. My brain seems unwilling to move on from my first recorded relapse, the one that affected my speech. I mean, me? It’s almost an insult. Especially when I try to reply to the good-natured building site banter. ‘Oh, yeah, give us a minute, yeah, and I’ll think of somefink witty to say’. Too late.

MS is an oppressive bully who just won’t give up. MS will push you around, kick your feet from under you, prod you, squish your memory and generally make your normal day-to-day life a living nightmare. It will make you incapable of paying by cash (my nightmare). Coins scatter everywhere. It will make you nervous at checkouts (um, can you slow down, just a little bit?).

MS is a malevolent shadow, mimicking your actions with a macabre comic touch. Anything you do, MS will magnify. A slight stumble on a doorstep will become a massive trip through your own front door. A twitch will become an embarrassing tic you can’t get rid of. You will fall out of cars, trip into stores and scan the pavements for cracks. And in amongst it all, there will be the Clinical Neurological Fatigue (TM).

And that’s the next problem. Try explaining that to people. ‘Yup, I have to sleep a lot’.

‘Oh, me too. I love sleeping. You’re so lucky!’

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Dec 11 2014
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Symptoms and Treatment

What Do I Do Now?

mazeI had an appointment with my wonderful MS nurse yesterday. The situation as it stands is: I was diagnosed with rapidly-evolving MS and have had two courses of Alemtuzumab, just before NICE licensed it for MS patients.

They recommend only two courses, whereas there have been people who have had a third or fourth course before NICE. Hmm. Can I have a third?

Please? Pretty please? I won’t complain about the hospital food?

Well….. Oh. Can I take anything else? I had a relapse in February?

Well, there is Tecfidera.

Yay!

But this Trust won’t give you it. Oh. Any new problems? The nerve  and muscle pain in my legs has increased terribly. Every single evening, I’m in agony. Thank heavens for my automatic car, lol (this is where, for some bizarre reason, I imitate driving a car).

Well, there is Sativex, licensed for use in Wales.

Yay!

But this Trust won’t give you it.

Oh. You can see where I’m going with this.

I asked about Tysabri. No good, as I’m now – thanks to Alemtuzumab – not deemed as having rapidly-evolving MS. Vicious circle? So what are my options? At the moment, purely symptomatic. I don’t qualify for any disease modifying treatments.

My health is deteriorating. I know it shouldn’t, given the Alemtuzumab, but I also shouldn’t have had a relapse seven months after my last treatment. Don’t get me wrong, without Alemtuzumab, who knows where I would be now, and I will be forever indebted.

I pleaded my case: it’s only thanks to this medication that I am still working, still taking cheek from The Teenager, have enrolled in further education. And still  manage to push the vacuum round every now and again.

No go. I left, by way of the WHS outlet, where I bought a trashy magazine to cheer myself up. Got to the car park and realised I  had left my card in the payment machine in WHS. Schlep back, cry a little when talking to WHS member of staff who finds my card. She says she sees it all the time. I buy a chewy healthy bar and leave.

Get back home, letting it all sink in. I had explained to my lovely MS nurse that I felt I was up against an egg-timer and  my time was running out. Could I see The Teenager through his horrible Nirvana stage and get him into uni? Would he ever get his hair cut? Would I complete my Masters? Without my beloved Amantadine, which combated my fatigue, I felt as if I was back to square one. Like an evil Monopoly game. Do Not Pass Go. Go Straight To Jail.

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Nov 27 2014
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Symptoms and Treatment

Packet In…

bang head hereWhat do Maltesers, Felix Crispies Cat Treats and Wotsits all have in common?

Nope, I don’t actually eat them all, honest; it’s the fact that I can’t open any of them without using Awfully Bad Language.

I first noticed this disturbing turn of events when I had settled myself on the sofa one evening with a good book and a pack of Maltesers.

Fumble, fumble. Use teeth. Grrrr. The ‘easy-tear’ opening remained unimpressed by my heroic efforts to free the chocolates nestled within and stayed stubbornly sealed.

Totally unfair. I got a bit upset before I stumbled into the kitchen and found a pair of scissors. But it’s not the point really.

‘Easy-tear’ should mean exactly that.

Just as I was coming to terms with this change of circumstance, shampoo bottles started ganging up against me. Ok, so they may not label themselves ‘Easy Squeeze’ like Mayonnaise does but you’d think it would be fairly simple to squish out  a blob of shampoo. Not a bit. Some of my bottles actively discourage me from doing this so I end up using The Teenagers’s all-in-one Body/Hair/Brain wash. My own bottles are just so darned hard to squeeze. Must be all the fancy packaging and promises. No wonder my hair is like a bonkers haystack.

I don’t think I’m asking for much. I only want to be that woman in the adverts who effortlessly opens sublime chocolates, beautifully eases out a perfect round blob of shampoo and can open a microwavable bacon buttie without weeping. But then, she has a size 2 figure and amazing hair, so I don’t really get off the starting block. Meh.

My hands just don’t work the way they used to, much like the rest of me. So perhaps I could decant stuff to make it easier and always, always have a pair of scissors handy. But then I would have to furtively snip the tops of packets when out in public. Bit weird. When did you last see someone in a pub open a shared packet of Scampi Fries with scissors? And would you want to sit next to them?

Me neither. So my quest for easy-open packets and bottles continues. We’re running out of Lynx and I’ve resorted to Kinder Eggs. Mind you, the toys these days are fabulous.

Is it me?

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Nov 20 2014
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Symptoms and Treatment

In The Wee Small Hours

insomniaMS is a pain.

It nudges me awake at night then makes me sleep through the day.

I have a good few days off work and the bliss of sleeping in the afternoon cannot be understated.

For example, today, I made myself a lovely tuna sandwich complete with mashed capers. Perfect. Thought I’d nod off for a little while before The Essay. I woke up THREE hours later, just in time to gather myself to welcome The Teenager back home from school.

But. In the ye olden days, i.e. before MS, I used to sleep like a log. Straight through. Now, I wake at 2am, 3am, etc. Anything can wake me – a cramp, a weird hand fixed into something gruesome (ewwww) or the cat lying on my face. It has been known.

In short, sleep has become the bane of my life. I hate it and I love it. To me, it is a complete waste of valuable time. To MS, it is a necessity. So I gather my blankie around me and do my time.

I try to fight it but I always lose. Sleep is a drug when you have MS and now I can’t take Amantadine (sniff) any more, sleep is more important than ever.

I did manage to make it to my lecture last night and stayed awake. But I scratched a lot. Is that an MS symptom?

Anyway, sleep, or lack of is becoming far too much of a problem. I will not and can not, sleep my life away.

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