Nov 13 2012
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Symptoms and Treatment

Fatigue Management for the Weary

fatigue management for the wearyI was invited to join an MS Fatigue Management course, which started yesterday. The aim is to discuss strategies for coping with fatigue, the impact it can have and to meet people in a similar situation. Our little gang is now proud to be launching a new campaign – to redefine MS fatigue/tiredness/exhaustion as ‘Clinical Fatigue’, in the hope that we will be taken more seriously.

Let me explain. Fatigue is one of the most common symptoms in MS and around 80% of us have it. There is a medical reason for it – the demyelination in the central nervous system and is the result of the disease process of MS. Ok, technical bit over, now the day-to-day reality. MS fatigue is like being run over by a big lorry of tiredness and squashed flat. It can strike out of nowhere. It can seriously get in the way of life and is similar to how you would feel if you were awake for 48 hours non-stop.

So why the song and dance? Well, it’s just so darned difficult to convey to friends, family, work, random strangers that this is extreme tiredness. Off the scale in intensity. Typical conversation:

Them: How are you today (looking me up and down). You look good?

Me: Oh, I’m cream-crackered. Exhausted.

Them: Yeah, know just how you feel. I was pooped last night.

Me: No, I mean really, really tired.

Them: God, yeah. That’s like me every day. But you look so well!

Me: I’m off to bed…ta ra.

It’s frustrating. I would bang my head against the wall in frustration if it didn’t make me so tired, and anyhow,  there’s enough damage in my brain already.

The course was excellent and I met some brilliant people. It’s refreshing to hear that I’m not making it up, the tiredness is not me being lazy, or me going mad. This is why we want to campaign to redefine MS fatigue, give it a proper, medical name. So from now on, we will be referring to it as  ‘Clinical Fatigue’, to give it the gravitas it deserves.

I would go out with a placard and march up and down the street, but I am exhausted and I’m going to squeeze in a quick nap before The Teenager gets back from school…

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Nov 12 2012
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Symptoms and Treatment

Relapse Hide and Seek

playing hide and seek with a relapseMost of us with relapsing-remitting MS will be familiar with examining every tiny little symptom and asking, ‘is this a relapse or am I just being over-sensitive/paranoid?’. We live in constant fear and easily forget how, pre-MS, we got sick anyway and sometimes we felt under par or just generally a bit rubbish.

Post-MS, the situation shifts. A relapse is bad news. They can last for as little as a few days or for as long as several months and initially the symptoms can be confusing. I can quite honestly say, I have never analysed my health in so much ridiculously fine detail. I wake up every morning and lie there for a little while mentally scanning through my body. How do I feel? Anything odd? Ok, get out of bed. How’s my balance? Am I a bit more wibbly on my feet than usual? Standing in the shower, can I raise my hands ok? It is constant.

One day, I woke up from an afternoon nap in blind terror. My left hand was numb. I couldn’t move it at all and I began to panic – how would I change gears in the car, how could I go shopping with a dud hand? You can imagine how stupid I felt when I realised I had slept on it.

So I play a constant game of relapse hide and seek. If I pretend there’s nothing really wrong, well, there’s nothing really wrong, is there? I’ll just stay one step ahead of the game. MS is like a constant heat-seeking missile, on the prowl, stalking you all the time. Just for fun, you can also have a pseudo-relapse, a temporary flare up, commonly triggered by stress, heat or exertion.

I think this is what happened to me last week. I had a friend over for wine and a gossip, but I felt odd (before the bottle was opened….) – a spaced-out feeling I normally get at the start of a major relapse. I tried to shrug it off and laugh about it, but in the back of my mind, I was running away and hiding. Fast. Luckily, it came to nothing and I woke up fine the next day.

For now then, I am relapse-free and I hope to remain so for a good time yet. Until we meet again, Mr Relapse, go away and leave me in peace….

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Nov 11 2012
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My Ramblings

Why, Mr Darcy….

After some serious blog posts about being sacked from my job for having MS, it is good to bring some breathtakingly exciting news – Bridget Jones returns! There will be a third novel published next Autumn and I have donned my big pants in celebration.

Bridget played a pretty big role in my life. I read the novel while I was pregnant (always arriving late to a trend) and the first film came out when The Teenager was a baby. I remember watching it with a sigh of relief that I was past that stage, yet bittersweetly nostalgic for my ‘carefree’ single days. Mind you, I have never had two men fighting over me (oi, over here, Darcy!) and it never snowed quite so beautifully when I lived in London. But what Bridget showed legions of women, including me, was that it was ok to be less than perfect, or overweight or not entirely sure of which direction our lives were headed in. She spoke for all of us.

I identified with Bridget in so many ways – the badly-put-together work wardrobe, the awkwardness, the rampant self-doubt and the complete inability to cook for a dinner party. I winced with recognition at her eagerness to be wanted by Daniel Cleaver, the cad. And I too feared I would end my days alone, half-eaten by Alsatians.

I am worried though, that if they age Bridget in real time, she will be in her late 40’s. Will she be as funny? Will she be blogging instead of writing a diary and counting her Twitter followers instead of how many cigarettes she smokes? Crucially, will she still speak for all of us? I await with baited breath.

If I were Bridget, my daily life would be something like: Alcohol units: too many, Weight: fluctuating, Meds: 3 plus 5 supplements, Hours spent seeking blogging inspiration: 2.5.

Note to self: Lose weight, drink less and eat more vegetables. Then my very own Mr Darcy may just come along…

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Nov 09 2012
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Symptoms and Treatment

Magical Alemtuzumab

The day I was diagnosed with MS, my neurologist told me that mine was the highly-active or rapidly-evolving sort. I had two choices. The usual disease modifying drugs or Alemtuzumab (Campath). It’s a drug used to treat leukaemia, and in laywoman’s terms, it strips out your immune system, killing the T-cells involved in the MS immune response.

There’s some pretty serious side-effects including a 1 in 3 chance of developing a thyroid problem, but it can halt the progression of MS for at least 10 years by reducing the number of relapses. A no-brainer for me – I was having relapse after relapse with barely time to catch my breath inbetween. It was like being thrown against a wall repeatedly. My body was battered and bruised, I couldn’t walk properly, I slept all the time and fell over a lot.

So, it was an easy choice and I know just how fortunate I was. I was lucky to be under a hospital which took part in the trials. It is still unlicensed for use with MS, but was given to me on a ‘compassionate basis’. All I wanted was to be able to see The Teenager off to university in a couple of years. I didn’t want him to be my carer, or to always be too tired to take him anywhere.

After five days in hospital, hooked  up to an IV, pumped full of chemicals and steroids, I was back home without an immune system for the next few weeks. Now, four months on, a miracle has taken place. I still get tired but I don’t need to sleep the afternoon away, I haven’t fallen over, I can walk (stumble) far better than before and I just generally feel, well, normal(ish) again. I haven’t had a relapse…yet. Touch wood. Don’t walk on cracks on the pavement. I still have a whole bag of symptoms, just not all at once.

So why am I angry? Well, the makers of this wonder-drug have withdrawn it from market, in a bid to relaunch it as an MS-drug and will price it out the reach of most health authorities. Big Pharma strikes again…..

Read Sian’s brilliant blog for more information – she’s pretty angry too.

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Nov 08 2012
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Blogging

Discovering New Blogs

Lynn C Schreiber has created a blog hop for discovering new blogs – I’ve only been blogging since September, so I’m in! Following the rules, here are my answers:

Who am I?

I am a working-mum, living with multiple sclerosis. I was diagnosed this year and I seem to have a whole load to talk/get angry/be sad about. Whether you like it or not, life with this diagnosis changes in so many ways, most of which I explore in my blog. Along the way, I was sacked for having MS, so this saga is unfolding too…

Aside from that, I am a normal 30-something gal who likes nothing better than meeting up with friends, exploring/trying out new things. sitting in cafes people watching for hours on end, upcycling things rescued from charity shops and attempting craft projects seen on Pinterest, not always with a great deal of success.

Why did I start blogging?

I wanted to write about living a life with MS. It’s challenges, quirkiness, oddness and downright madness. In light of recent events (being sacked), I now want to let people know that yes, this does still happen in 2012. I want to rail against the injustice of it (and eat a lot of chocolate).

Which post am I most pleased with?

Ooh, too many to mention! Can I choose two?

Doing Housework the MS Way – Simply because it still makes me smile when I read it, and it’s good to see the brighter side of life sometimes.

A Recipe For Changing Your Life – As I was so angry when I wrote this and it was great therapy!

Which post had the most response? 

Get Lost – about the day I was sacked for having MS. It was great to know I had a lot of support out there.

Which blogs do I like reading?

pressiesbypebbles.com

2under2.co.uk

homelessmummy.wordpress.com

alemtuzumabmsandme.co.uk

lickingthehoney.org

 

 

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