Aug 28 2013
8 Comments
Symptoms and Treatment

Last Year A Neuro Saved My Life

last year a neuro saved my lifeI’ve had quite a few emails and comments asking about the Campath (Alemtuzumab) treatment I had and how it works.

It is an experimental drug treatment (originally licensed for leukaemia and in organ transplantation) for rapidly-evolving or highly-active relapsing remitting MS and acts by suppressing the immune system and killing T-cells which are involved in the MS immune system response.

It’s a bit like re-booting a computer – after the immune system is taken down, it builds back up again with T-cells that don’t destroy myelin.

Before I had this treatment, I was having relapse after relapse with barely any breathing space in between. My life and health were on a downward spiral and I was struggling to hold myself and my little family together. I had a five day infusion last year and a three day one this year and hopefully, that’s it.

Campath has given me my life back. I still have most of the same symptoms I had before, but the baseline is much lower and as I haven’t had a relapse since last year, there’s been no progression in my MS. It’s as if I have been handed a miracle.

It’s not without side-effects, as in any serious medication – the possibility of an overactive or underactive thyroid gland in around a third of people (which can be treated with lifelong thyroid medication) and the risk of idiopathic thrombocytopenic purpura (ITP), a blood clotting disorder, in 1-3% of people, which is why anyone having Campath must have monthly blood tests for five years after the treatment.

Genzyme, the manufacturer of Campath, submitted it for licensing in Europe last year. If a licence is granted, NICE (National Institute for Health and Clinical Excellence) will appraise the drug, determining whether the cost of treatment is approved for the NHS. There is a fear the company will price the drug out of reach of the NHS.

Judging from my own experience, I can only fervently wish that anyone eligible for the treatment receives it. Financially, I am far less a drain on NHS resources now that my health has stabilised. But more importantly, I can face the future with more hope.

(Some of this information comes from the MS Trust’s excellent fact sheet –  read more here)

p.s. after today, I’m back to blogging every other day – I just really wanted to publish this post and reply to people who had asked about it.

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Aug 27 2013
18 Comments
Daily Life

Groundhog Day

groundhog dayI was away at the weekend with The Teenager and a friend, who came with me only on the condition that he could watch Formula 1 (yawn).

To pass the ho-hum time away, I read the newspapers and amused myself by reading bits out to him as he tried to concentrate on men in leather onesies going round and round and round in little cars.

– ‘I didn’t know Richard Pryor had MS, did you?’

– ‘Nope. Shhh. They’re on the 27th lap.

– ‘Bored.’

– ‘Shhh. Anyway, you’ve got MS, what’s the big deal?’

Of course. I completely forgot I had MS. Weird. I’d like to say it’s because I’m in rude health, but it’s probably more likely that all my symptoms have now been fully assimilated into my life and it’s just…normal?

This happens most days and it’s like a short, sharp shock every single time I remember. A bit like mornings when The Teenager was a newborn and it’d dawn on me that I was A Mother. I’d lie there, waiting for him to start yelling (never took long) and wonder why on earth the maternity unit actually let me leave the hospital with him. When they told me I was free to leave, I looked at the baby then back at them, asking, ‘seriously? He’s so….um, so, kind of small?’ ‘Yes love, babies generally are. Now, be a dear and shut the door behind you.’

Will this groundhog day ever end? Of course I know I have MS. My legs, arms and brain tell me. Or is this actually a good thing? Have I come to a point of quiet acceptance? I mean, I still chuckle when I realise I’m a mother to a teenager. Me? Really? I feel like I was one myself only a few years ago.

Or as The Teenager says, ‘mum, if you say ‘totes’ one more time and keep reading Heat magazine, I’ll get you a subscription to Women’s Weekly for your Christmas.’

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Aug 26 2013
12 Comments
Media

The Daily Fail

fifties housewifeAfter a cup of strong black coffee, I force myself to look at the Daily Mail every morning.

Before you start pelting me with rotten tomatoes, I read it to keep up with what the fabled Middle England thinks of benefits ‘scroungers’. And disabled people. And single mums. And mums who only have one child. I could go on. Knowledge is power.

Anyway, my particular gripe today is their ‘Femail’ section, published each Thursday. Here’s a selection of last week’s illuminating articles:

  • The couple who say the secret of a happy marriage is NOT having children – selfish and deluded or just honest?
  • The nun who ached to have a baby.
  • Would you let your man pack your holiday case?
  • I’m anorexic but love Bake Off. 
  • Simple tricks to look 10 years younger.
  • The real reason you’re stressed….SUGAR.
  • The new parenting fad experts fear could KILL your baby. 
  • The five shoes every woman should own. 
  • Quicker chores. 

If this is a snapshot of today’s modern woman, just hand me a bottle of Fairy Liquid and chain me to the kitchen sink in protest. Apart from the fact it’s truly astounding we even have a dedicated women’s section in a national newspaper (we can’t handle the proper news, eh?), this section consistently rams home the same old dreary message week after week: all women (even nuns) want children, and if they don’t, there’s something wrong with them. All mothers need expert guidance, or we could kill our babies.

We also all want to lose weight (either that or we’re at the anorexic end of the spectrum), look younger, need tips for whizzing through the housework faster, presumably to allow us more time to affectionately tease our ‘men’ when we let them pack our suitcases for us only to sigh at their helpless, endearing incompetence. Men, eh?

The subtext message is even more sinister than just wanting to keep us in a Prozac-ed version of the 1950’s. The paper consistently pits women against each other – who can forget the Samantha Brick ‘I’m so beautiful’ furore? We might laugh at this ridiculous newspaper, although their ‘experts’ could quite feasibly claim too much laughter leads to cellulite (here’s 10 top tips to deal with this orange-peeled menace!), but the fact is, The Daily Fail has a daily readership of over 4 million and their website has over 100 million unique visitors a month.

Don’t ask my opinion though, I’m far too busy whipping up a tasty meal for my man. Oh. I don’t have a man. Maybe it’s the cellulite?

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Aug 24 2013
6 Comments
Blogging

Emotions….

Craig's pictureCraig is my guest blogger today. He’s just started his own blog, so check it out at www.jonnyspandex.blogspot.co.uk.

Hi, my name’s Craig. I’m 27 and from Leicester, UK, and I’ve got MS (shock!).

Sorry if I’m sat funny, I’ve just injected copaxone in my stomach.

So, after my request for a guest blog was accepted, while I made a tea for the missus and installed MS (see what I did there?) Word, I got to thinking about what I wanted to say, the ideas just started rolling! But I had to pick one, which is like when you have to pick one thing out of several you like and want. So I’ll start like this:

Emotions. Emotions are like MS. We know what they do, and how they work (how symptoms occur in MS, not the disease itself). The issue with both is that we don’t know how to stop them. My daughter is deaf, has been from the day she was born, but it was caught fast and she got hearing aids. At 4, it started deteriorating. I knew it was coming, but the night her deaf teacher rang and told me, I cried my eyes out. I knew exactly why I was and the reason scares me. I’d lost control of the situation, we’d countered on her hearing loss with the aids but it wasn’t going to be enough as it got worse and I was powerless to stop it. Quick end to the story, she’s now got cochlear implants and is fine! 🙂

Right now I’m doing things to hopefully help with MS; I’m in control (aka remission!). But with my first relapse, it hit home at the seriousness of what I’d got, that night I lost control. I’ve still got a lingering side effect, but it’s part of me. More recently, I’m looking at situations in life more and more and imagine what it’d be like. I could actually cry at soppy films sometimes, not because Di Caprio dies at the end (hat that film!)  but because I’m relating to stories so much more. A PPMS sufferer I speak to on Twitter (sorry, Steve, it’s you!) was having an especially bad day and what I read on it made me so angry, that I/he/anyone can do nothing for it. It made me feel so many emotions but again, no on has control over it, all you can do is sit back and watch the proverbial hit the fan.

Forget all that anyway, the footy’s back!

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Aug 22 2013
19 Comments
Blogging

Confused Dot Com

to blog or not to blogHmm. Excuse my random ramblings in this post – my last blog post threw up some extremely thought-provoking comments and I’m still working my way through them.

A couple of people were concerned that I’m blogging/thinking/worrying about MS too much perhaps and I completely understand what they mean, as I blog every two days.

Has MS dominated my life to detrimental levels? I’ve also always posted about things unconnected to MS, such as my adventures with make-up, The Teenager, my rantings against the Daily Mail, politicians, lifestyle gurus, etc.

Funnily enough, before the comments, I was wondering how I should move my blog on slightly, especially after the second lot of Campath treatment I had in July. Or is it naturally evolving anyway?

Initially, I started the blog for two reasons. First, to make sense of everything and second, to show that there is light at the end of the tunnel. It’s not all bad and some of it can be downright hysterical. Worst case scenario, if my blog bombed, at least I would have a nifty diary to show The Teenager when he was older.

So, where do I go from here? How much is MS a part of my life? Honestly, blogging has been the best form of therapy ever, and it’s thanks to comments from you guys that I can be prodded in the right direction. Blogging is public and I’ve always published every comment, no matter how much they might make me go ‘Ouch, that hurt.’ Otherwise, why blog? Why put yourself up for public scrutiny? Why not just scribble in a diary?

My MS journey has been weird and wonderful. If nothing else, I hope that people can see that it is possible to fight back against discrimination in work, that it is possible to be a single parent with MS and it is possible to get back up after being knocked down. I’m still confused. I love writing. I adore the discipline of searching for the right word, the best way to convey complicated feelings. I’m not yet sure how to change the direction of my blog.

Finally, now I have had Campath and haven’t had a relapse since last year, am I still ‘qualified’ enough to talk about MS? All I know is, blogging kept me sane through dark times. And without you guys, this wouldn’t have happened.

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