Monthly Archives: October 2012

Oct 22 2012
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Symptoms and Treatment

The Joy of Meds

I’ve been taking Pregabalin (Lyrica) for over a year now to help with the neuropathic pain I get from multiple sclerosis – the burning/buzzing/stabbing pains in my legs, feet and just about everywhere else, including in some…..odd places.

Just for good measure, I also take Omega 3 fish oil, Evening Primrose oil, multivitamins, vitamin B complex and vitamin C with zinc, so I rattle around a fair bit every morning.

A friend asked me recently what the pains felt like. Tricky to explain. Some days it’s as if I have mobile phones strapped to my feet, set to vibrate constantly. Other days it’s just endless tingling and waves of pulsing, throbbing  pain. Then there’s the stabbing pains in my shoulders, the twitching, the muscle ache.

It can feel like my body is one big marionette, pulled this way and that, controlled by something much bigger than me.

At my last MS clinic appointment, the nurse recommended the Lyrica is increased and two days ago I started the higher dose. There’s no discernible change as yet but I am hopeful. Mostly the pain is a dull, ever-present lurking shadow, following me everywhere and I am learning to live with it. But sometimes, I just want it to stop. Even just for an hour, so I can remember what it was like before all this started. A whole hour with no jerking, twitching, burning, stabbing, buzzing.

The biggest side effect of Lyrica for me is an increased appetite. I know, I know, I should eat more fruit, stock up on boiled eggs and always have a handful of nuts in my pocket. I really try. According to the leaflet that comes with Lyrica, this can affect more than one person in 100.

The leaflet makes for fascinating  and thought-provoking reading. Lyrica’s other side effects include – tiredness, tingling feeling, clumsiness, tremor, lethargy, problems with balance, feeling drunk, abnormal style of walking, jerky movements, difficulty finding words, muscle twitching, muscle stiffness,  and  slow or reduced movement of the body.

Are you thinking what I’m thinking? Sounds very familiar…

Oct 21 2012
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Daily Life

How to Drink with MS…

Kermit DrunkOne of the more socially annoying aspects of having multiple sclerosis is that I am suddenly a very cheap date. A couple of glasses of my favourite tipple, dry white wine, and I’m zooming away into oblivion. Or more often than not, maudlin and tearful. ‘Why meeeeee’, I’ll wail, filling up my glass to the brim and wiping my smeared mascara all over my face. ‘Don’t wanna have MS, s’not fair’.

So, as with many other things in my life now, I have to be creative and think of new ways of doing things. I have now solved the alcohol conundrum. And I no longer argue with lamp posts.

I have cunningly switched from white wine to red. I can’t drink red wine quickly, so I drink far less than I would if it were white. Clever, eh? Plus, it gives me a much more mellow feeling than white, so rather than wailing, I simply ponder how my life has changed. Like a proper grown up.

On Friday night, with The Teenager at a sleepover, I put this new-found knowledge to the test. My friend took me out to a lovely old gastro-pub in the countryside. We shared a bottle of red. Lovely. And we had a very grown-up sophisticated conversation, catching up on our week. Sipping my wine thoughtfully, I made interesting and insightful comments.

At the next place, a cafe-slash-wine bar (car now safely deposited at home), we shared another bottle and had yet more intelligent conversation. And I even managed to go to the loo without stumbling. Finally, we had a night-cap at a pub, sitting outside. I felt smugly superior to the clearly-drunk women staggering around, clutching glasses of white wine, yelling at passing cars.

I was feeling very proud now, and congratulated myself on being such a responsible adult. So maybe we shouldn’t have popped into the late-night supermarket on the way home .

Waking up the next morning with a dry throat and slightly trembling hands, I went downstairs and found the previous night’s spoils. A packet of Hallowe’en cakes, two supersize bags of crisps, an unopened bottle of red wine and an exercise magazine. Muppet.

 

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Oct 20 2012
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Emotions

My dad, his MS

My dad died in the 1970’s, aged 35, from complications arising from multiple sclerosis. I was four and a half. I don’t think I remember him, as I find it difficult to distinguish real memories from what I have been told.

Over the years, of course I missed my dad, but was it hard to miss what I had never had in my life? I pieced together his MS progression, picking up hints here and there. Back in the 1970’s, MS was often referred to as ‘creeping paralysis’ and was a deadly diagnosis. MRI scans were not actively used until at least the 1980’s, there were no disease modifying drugs and people like my dad were routinely written off and sent home to cope as best they could with what little they had.

I recently heard that my mum had invested her meagre savings into buying a serum from the Eastern-bloc, which would apparently halt, then reverse my dad’s symptoms. She paid a dubious middle man and her money, and the serum,  were never seen again.

Now I have MS, confirmed through two MRI’s, showing the progression of my illness in devastating detail. I have my pick of drugs. I have a whole MS team behind me and have been assigned a neurologist and MS nurse. There is physiotherapy, yoga, counselling and an incontinence nurse if I need her plus a whole raft of support groups and forums. Do I feel lucky?

Yes, of course I do. I was fortunate enough to be born into an era of medical expansion and discovery. Hopefully we will have a cure for MS within a decade. Whilst I was going through the diagnostic process – a tedious, frustrating, point-ticking process – I put a photo of my dad on my kitchen windowsill so I could see him every morning. ‘Thanks, dad’, I would say as I put the radio on. Of all the things you could leave me with, you had to pass on this. Cracking legacy. I was angry, furious.

In a strange way though, having MS made me feel much closer to my dad. With every new symptom – and there were many – I would align myself with him. Did he have this, did he have that? I felt as if we could have been kindred spirits. I may have his eyes, his mannerisms, his fearlessness, but that is only what I hear, what I have been told by other people. Now, I have something I know he experienced.

Is that odd? I hope that I can take every opportunity going, as my dad did not have the chance, or lifespan, to do so. If I can somehow honour his memory in this way, then I will do everything I can to do just that.

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Oct 19 2012
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Symptoms and Treatment

Dodgy Hands and Wonky Feet

dodgy hands and wonky feetI have been bouncing off the walls the last couple of days. Quite literally. It started in work, where I walked into the kitchen door three times. Just for good measure, my hands have decided to suddenly let go of things at random or not grasp them at all and my feet aren’t working properly.

I had a day off work yesterday, but rather than hiding away with Jeremy Kyle and the Loose Women, I pushed myself out the house and went off for some retail therapy and a determination not to let the symptoms get the better of me. Bad idea?

It started so well. I navigated the supermarket, dodging the Jenga towers of Christmas chocolate tins and super-value loo roll packs. Went to pick up my newspaper and failed four times. Looking around me, I pretended I meant to do it, undecided as I surely was about which paper to choose. Think it worked. Got to the checkout where the terminally bored girl sighed loudly as I fumbled with my purse. And fumbled. Couldn’t open the darn zip or find my loyalty card.

Leaving with a heavy bag of shopping, I stumbled, knocked into the automatic doors and dropped my keys. Undefeated, and after being helped by the Big Issue seller standing outside, I made my way to the coffee shop. Deep breath. Order a coffee and a poppy seed cake for being so brave. Turn round with my tray, shopping bag heaved onto my shoulder. I can definitely do this. But somehow, within five minutes, a three-prams-and-a-double-buggy assault course had formed behind me. And the table I wanted was past them. Ok. Co-ordinate feet, hold on to the tray very, very tightly and do not bounce off the cake cabinet.

I must have looked distinctly demented and the mothers gripped their pram handles a little tighter. But I made it. I ate my cake, drank my coffee and watched the world go by. And when I got up to leave, I didn’t knock anything off the table or drop my bags. But someone had definitely moved the door….

 

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Oct 18 2012
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Daily Life

Hallowe’en Is Coming

I know it’s a bit early but I adore Hallowe’en. I used to love cutting witch shapes out of black card and making ghosts from scrunched-up toilet roll with The Teenager when he was younger. But I especially loved carving a pumpkin, cutting out a lopsided evil grin and having it lit all evening until it started to smoulder.

We didn’t really ‘do’ Hallowe’en as kids. I used to have a Canadian penfriend and I was puzzled when she sent me a Hallowe’en card, so much so that I took it into school the next day where it was handed round with reverence and wonder.

Now The Teenager is way beyond Hallowe’en crafts, laughs at my Happy Hallowe’en wreath and would be seriously worried if he caught me making those ghosts and witches, just for old times sake.

I am determined to keep up my pumpkin tradition no matter what The Teenager says, so yesterday I bought one, lugged it home and looked up pumpkin pie recipes. I do this every year and every year I look at the pile of gunk I’ve just scooped from the pumpkin then sweep it all into the food recycling bin, vowing to do it next year. Promise. A few years ago a yummy-mummy friend of mine separated and dried out all the pumpkin seeds in the oven, then sat down and made a necklace out of them with her daughter during their ‘mummy and me’ time. We are no longer friends, the pressure was too much.

Anyway, the pumpkin is finished. It’s not artistic, more deliberately naiive for that authentic, child-in-the-house look. Can’t be seen to be taking it too seriously. And The Teenager has just told me he is going out trick or treating. I tried to tell him he might come across as quite threatening, being  six feet tall, but I was just talking to the hand…

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