Mar 25 2016
16 Comments
Emotions

MS Survivor’s Guilt – Is That Even A Thing?

guiltIt’s bad enough being made to feel guilty by some fellow-MS’ers, now I’ve had Alemtuzumab treatment.

‘You’re lucky.’

‘You don’t know what I’ve gone through.’

‘Are you sure you have MS?’

Before this treatment, I was a wreck – relapse after relapse was destroying my body – I barely had time to breathe before the next onslaught.

The treatment is brutal but effective; it’s held off the endless relapses and hopefully I will manage to see The Teenager off to University – my main aim.

My detractors forget something.

Not only do I feel ‘bad’ that I’ve been deemed eligible for a treatment not everyone can access, but I also live in the shadow of so-called survivor’s guilt.

My dad died from his MS complications, way back in 1978. His birthday would have been today. He was 35 when he died.

When MS first appeared when I was 37, I’m not ashamed to say I panicked. I fell down a deep well of despair. I went in to denial. This could not be happening to me. There was no way it could happen. Could history really repeat itself?

Well, it seems it could. I was diagnosed four years ago this May and as my MS was highly-active and rapidly-evolving, I took the step of taking Alemtuzumab treatment. I have now had three courses over the last four years. The relapses still appear, there’s just fewer of them.

As I was hooked up with a cannula, having steroids first, then a flush, then the treatment, I lay back and thought about how lucky I was. Not to have MS, but to have the treatment options.

So, today, on my dad’s birthday, I will mourn everything he missed out on due to this disease. The unfairness of it takes my breath away. I miss him.

And if I have elected to undergo a horrible treatment three times to make sure I can give The Teenager experiences I never had, I will.

Why wouldn’t I?

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Mar 20 2016
8 Comments
Emotions

Miss Non-Opportunity

idiotStory of my life.

I let the (potential)  man of my dreams slip through my fingers. Perhaps.

I was having one of those Sunday mornings, when you think, ‘ah, I’ll wear those really baggy jeans and a really old top with holes in it and some ancient shoes, but for some reason I’ll spray myself in perfume.’

You know – you just want to feel a little feminine despite the clothes? Touch of mascara and tinted lip-balm. Sorted.

In my defence, and with hindsight, I’d had an awful MS Saturday and MS sleep. No matter. It was too late.

Anyway. There I was, in my local corner store, buying up a pile of papers and one of those huge chocolate bars on offer.

A man appeared in my peripheral vision. I didn’t look – playing it cool. He leaned a little closer. I moved a little away (honestly – I have learnt nothing from reading all those ‘how to meet a man in your local store’ articles).

He spoke. ‘I love your perfume!’

Reader, I garbled. I cast a quick glance at the very tall, very handsome, very without-a-wedding-ring man standing next to me with a takeaway coffee in his hand. From my favourite coffee shop.

‘Ah. Ta, mate. Got it from Aldi.’

Did I just say that? Mate?

I did.

It got worse. I rummaged in my bag and actually pulled out the bottle to show him.

I even said, ‘Under a fiver! How’s that for a bargain!’

He looked a little scared, paid for his  newspaper and left.

I went home and had a very serious talk with myself.

Story of my life.

p.s. If you see this man – over six feet, black coat, Observer newpaper, bit of a stubble, nice boots – let me know …

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Mar 17 2016
22 Comments
Emotions

Handbags and Gladrags …

fatWow. Blimey.

My blog has been short-listed for an MS Society Award,

Three things go through my mind when I got the magical email:

  • Wow. Blimey.
  • Gah. Double gah. What. On. Earth. To. Wear. To. The. Ceremony?
  • What will The Teenager wear? Now he is very, very tall and has worked out a lot?

I must clarify, I’m not precious: most days, I hang out in baggy builders’ trousers, with seventeen pockets full of screws and a pad and pen in my hand. Just in case. I wear a bobble hat (dust always falls from the ceilings). In short, I am the furthest from glam than you could possibly imagine.

A day off for me is baggy jeans and a baggy top. And flat boots. Air-dried hair, slumped shoulders.

I literally (and, as an aspiring novelist, I don’t use this word lightly), cannot imagine me in a dress. Or a skirt. Or a skort. Or culottes. Which leaves trousers. Capri, full-length, baggy, tight.

Perhaps I should do a Jenny Beavan?

Anyway, that to one side, this is a great opportunity to turn it back to you guys.

Almost four years ago, out of sheer despair, I started my little blog with the encouragement of M. J. Hyland, a wonderful novelist; I had contacted her after reading an article she wrote for The Observer about her MS.

We emailed for a while and she suggested I blogged. The rest, as they say, is history. Almost four years later, my little blog has over 4,000 hits a month and is read in over 100 countries.

For a teeny-tiny MS blog, I’m chuffed. I write the blog I wanted to read – life is more than MS; it’s all about friends, family, work, studying, falling over, picking yourself up and … MS.

So, tonight, me and The Teenager are celebrating. He’s had a Domino’s pizza (treat night, once a week, to make up for having a ‘ripped and toned’ gym routine the other six nights).

As for me. I’m just taking it in.

One last thing – without your support, your comments, your ideas and encouragement, I know that I would not be here today. I would still be having that first Pity Party for One I mentioned way back in 2012. And where would I be then?

How times have changed.

Thank you for travelling this road with me.

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Mar 10 2016
12 Comments
My Ramblings

Divided We Fall?

worldI have a serious question.

There’s a lot of us across the world living with MS – some new to it, some ‘old hands’.

Do the people who have been living with MS for a good few years feel somehow separate from all those newly-diagnosed people?

It’s a personal question for me; regular readers of my blog will know that my dad died of MS complications when he was 35: he had Primary Progressive MS.

With that in mind, I didn’t hesitate to have Alemtuzumab treatment when I was diagnosed with highly-active, or rapidly-evolving MS in 2012.

Yet, when I attended MS-oriented events, there seemed to me to be a clear division between those who had benefited from the rapid advance in MS disease modifying drugs and those who had not had the opportunity to take them.

However, I have also met people younger than me with a drastically declined state of health that no amount of disease modifying drugs could halt. Where do they fit in?

Over the years since my diagnosis, I have heard from fellow MSers:

  • You don’t really know what it’s like to have MS.
  • You’ll never suffer the way I do (from a sprightly 70-year old)
  • MS? You don’t know the meaning of it – you’re cured now you have those drugs.

Is this helpful?

We do at least have something in common – the abject terror a diagnosis of MS brings. So why can’t we unite in our fight against this illness rather than comparing ourselves on a scale of 1 – 10?

Why can’t we be happy that significant advances in medication have been made, so that future MSers will enjoy an easier life? Isn’t this something to celebrate?

I will be forever grateful for the treatment I have had. It has given me back valuable years with The Teenager. And I am saddened there are not such a vast range of treatment options for those with a more progressive form of MS.

Yet, if we can unite, and stand up to MS together, no matter what hand it has dealt us, surely we are stronger?

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Mar 06 2016
10 Comments
Symptoms and Treatment

Eyes Wide Open

googlyNow, this is strange.

Since MS, I’m quite used to falling asleep at the drop of a hat, dozing off mid-conversation and eyeing up anything remotely comfortable – in any location – as a possible bed.

If I’m in a home-furnishings shop I’ll prod and pummel cushions, checking for sleep-ability. Too small, too hard, too soft. Too … not right.

But until now, I’ve never fallen asleep sitting up.

It’s a recent development and quite bizarre. The first time it happened, I was flicking through How to Write a Killer Novel in Ten Days, studiously highlighting important points (I may as well have highlighted the entire book).

Suddenly, my eyes went ‘all googly’ (technical term). They rolled around my head. I fought back, urging myself to wake up. The googly eyes continued and I dozed off, but was still able to hear everything around me. Very odd and ever so slightly terrifying.

I knew I was aware of my surroundings as I could hear The Teenager thundering down the stairs and snapping his fingers in front of my face, yelling, ‘Aaaaaand, you’re back in the room. Can I have some toast?’

It was exactly like being hypnotised, but being hypnotised for no good reason, such as creating an aversion to crisps or having an inexplicable hatred of Kinder chocolate.

The second time it happened was last night. I was watching a very interesting programme on catch-up and was just getting to the good-bit, the unveiling of the villain, when, blam, googly-eyes started up again. I shook my head, snapped it back. To no avail. Boom, I was out for the count.

I was only revived when The Teenager shook my shoulder and told me it was past my bedtime and there was no milk in the house. Unfortunately, the side-effect of googly-eyes is a complete inability to walk in a straight line, such is the strength of the induced sleep. So I staggered around the kitchen and living room, turning off lights, replenishing the cat’s crunchy food bowl, filling the kettle, then weaved my way to bed, bidding goodnight to The Teenager and his seventeen school friends who were playing online with him.

I lay in bed, pondering this new symptom. I told myself to stay calm. It could pass. It may not. So, I can sleep anywhere if I lie down and now if I sit up.

What happens if I can sleep standing up?

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