Category Archives: Emotions

Mar 30 2016
10 Comments
Emotions

MS – You’re Only As Old As You Feel …

shout… in my case, 82.

But it’s been a long week.

Anyway, I know I’m old as:

  • The Teenager has come home and told me – with great urgency – to listen to the uber-ancient song by Alanis Morisette; ‘Ironic’.
  • The Teenager has introduced me to Oasis. Again.
  • My knees are playing up and I grab on to things to hoist myself out of my seat.
  • Me and the cat listen to ‘Tweet of the Day’ on Radio 4 and discuss it afterwards.
  • I fill my trolley with tuna cans for one and a solitary bread roll.

This  has to stop.

In my mind, I am around 25-ish. (Note that I had The Teenager when I was 25-ish) Yet MS can do it’s darndest to make you feel, well, old. Ish. The creaking joints, the nodding off after the news, the brain fog, the unsteady walk.

How to counteract such MS deviousness?

I suggest a reclaiming of everything that makes us MSers feel old:

  • Tell everyone you meet you have MS. Works wonders. They will say, ‘by golly, I would never have known – you seem so, well … normal?’ (long argument)
  • Explain to the very handsome barista in your local coffee place that you may need some help carrying your tray of latte and chocolate brownie to your chosen seat, as you have MS. Shit happens?
  • Practise your ‘I know, I know, I don’t look old enough to have a debilitating, degenerative neurological illness. Blame my genes, lol.’

Most of us are diagnosed at an unseemly age. It’s plain wrong. We don’t feel ‘disabled’, merely ignored by society. I went from being valued, respected and well-regarded in my job until a diagnosis of MS made me into ‘a problem’. This has to stop.

If we can harness this outrage, we will go a long way.

We don’t ask for much – a little understanding, a little compassion. We are a talented bunch, who just so happen to have an illness which actually makes most of us more determined than ever to overcome the ‘disabled’ label.

What do you think?

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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 04 2016
2 Comments
Emotions

The MS Muse …

WriterAfter a very rocky start to 2016, life is slowly becoming more settled.

Sadly, MS hasn’t.

Perhaps it’s the stress of everything that has happened so far this year. And what a year.

Yet, life continues and I’m absorbing the same-old challenges MS insists on chucking in my path, like some super-charged Easter Bunny with a basketful of chocolate eggs: the slower than expected recovery from the flu, the mental fog, the tiredness (I now fall asleep sitting up, gah) and the usual increase in nerve pain.

Anyway, I plan to funnel this bounty of symptoms into my latest challenge – writing 4,000 – 6,000 words of my novel for my Masters. In six weeks.

Er. What novel?

Despite all the turmoil of the last two months – very ill relative, family dramas and ridiculous politics – I’ve at least attended my tutorials. I mean, I was there. But I appear to have taken nothing in. Thank goodness I have a scribe and I’m fascinated by the notes he sends me. Did we really discuss that? Did I actually make that terribly pretentious point?

Yup.

I’m panicking. A novel. Ok, not a whole novel, but the makings of one. Erm. Must dig out my fingerless gloves and turn the heating down. Exist on eggs boiled in saucepans of soup. Could be the makings of a new diet?

In between all this, The Teenager is interrupting my feeble efforts. He swoops downstairs, randomly flies his fingers across a few keys on my computer and sings along to Oasis hits. I mean, really? And … Stevie Wonder’s ‘Sir Duke’.

This isn’t really helping. Neither is MS. So I will call upon the MS Muse: when the worst has already happened, how bad can it be?

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