Category Archives: My Ramblings

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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Feb 19 2016
14 Comments
My Ramblings

MS – The Interview

forgiveMS is fairly busy these days – 100,00 of us to pester in the UK alone and millions across the world.

So it was fortuitous that it could take time out from a hectic schedule to settle down for a cosy chat:

MS: How’s things? Bad, I hope? Any more nerve pain?

Me: Funny you should say that, but yes. Don’t you ever give up?

MS: Short answer: No.

Me: Long answer?

MS: Well (long pause). It’s interesting, don’t you think? Push you just that little bit more?

Me: Really?

MS: I’ve always said – and no word of a lie – you have to be tough to live with MS. I have, haven’t I?

Me: Erm, yes?

MS: So. The way I see it, I’m doing you a favour? So, it’s bad, it’s sad, it’s painful, it’s isolating. And?

Me: What do you expect me to say? Thank you?

MS: Actually, yes. Whoah, stay seated and put that vase down. Listen. If I’m honest, it’s fun – all that freaky tiredness, making you walk funny, seeing you drop stuff. It makes me laugh. And?

Me: And what?

MS: Well. Let me think. You were diagnosed in – hang on – 2012? Yes?

Me: Yup.

MS: And what’s happened since then? Still with that bullying boss? That useless boyfriend? Still harbouring a vague notion of, and I quote, being a writer?

Me: I know what you’re doing.

MS: Good.

Me: You’ve ruined my life. I went through hell. My son was scared. I was scared. My future is uncertain.

MS: I haven’t ruined your life – you have a different job now and you love it. Your son is doing brilliantly. You’re not scared, you’re fearsome. And like anyone else on this planet, your future will always be uncertain. Deal with it.

Me: Why do you pop up so unexpectedly? Cripple me with absolute fatigue when I least expect it?

MS: Like I said, it’s fun.

Me: That’s unfair.

MS: Life is unfair. Are we done now? I’m very busy you know.

Me: I hate you.

MS: I hate you too. So we’re quits.

And with that, MS leaves.

But not quite …

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Dec 28 2015
4 Comments
My Ramblings

Standing Up For Sitting Down

sittingChristmas, I salute you.

It’s practically mandatory to sit down all day, watch old black and white films, gorge on chocolate and generally do not very much at all.

I love it.

Sadly though, I also have a short story (experimental and transgressive, gah) and a critical reflection piece to write.

Looking on the bright side however, it just means I get to sit down some more, only this time at my desk (after shoving the cat off the chair). Plus adequate supplies of chocolate and an old film playing in the background, the tv turned towards me.

Or that was the plan.

The Teenager has taken to his phone to communicate with me by text throughout the festivities and subsequent academic struggles:

‘I’m awake!!!’

‘Lovely dear. It’s 2pm’.

‘Mum?’

‘What?’

(Teenager sends through five screen shots of tops he wants to buy with his Christmas money)

‘Preference?’

‘I’m trying to write an essay’.

‘I like the red one. You?’

‘Very nice’.

‘Mum! What’s the best one? Is there toast in the house?’

‘The red one is nice. There’s bread in the freezer’.

‘Muum, muuuum, wanna make me toast? Because you wuv me? With honey? Jam if it’s easier?’

And so on and so on.

I’ve looked at all the study guides, and they recommend taking breaks after twenty or thirty minutes. So every half hour I sort out the laundry, organise the shopping list, vacuum, feed and play with the cat (I stupidly bought her a laser toy), dust, catch up on paperwork and sort out the recycling. Then I get back to the essay.

I suddenly have a wonderful idea, linking a little-known theory to my essay. I jot down notes, feel inspired, hover over the keyboard …’

A text.

I can’t help it. I look.

‘Have you seeeeen this?????’

(A short film or ‘gif’ of a rabbit doing a high-five, over and over again)

My wondrous literary thought (which could have changed the literary world) has disappeared, never to be retrieved. I save my paltry document and give in to the inevitable.

I resume my default On The Sofa position, controller handy, legs tucked up (MS nerve pain is a nightmare), bowl of chocolate within reach and a book at my side.

I scroll through my tv recordings. Ah. Aiden Turner, in an Agatha Christie locked-room mystery. Of course, I am compelled to watch it for, ahem, research. It’s based on a very, very famous novel.

I settle down.

Ping. Text.

‘Mum. Guess what?’

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Nov 06 2015
8 Comments
My Ramblings

That’s No Lady …

ladyI have a problem in work, and it’s not The Boss.

Well he is, but I have another one.

As I’m often to be found on a building site trying to make sense of architectural plans, tripping over wires, getting my hands dirty and generally mucking about with the lads, people sometimes forget that I am actually, ahem, a lady.

Yup, it shocks me too.

So it was with interest that I perused the recent article courtesy of ‘Country Life’, ’39 Steps to Being a Lady of 2015′.

I wish I hadn’t bothered.

Of the 39 steps, I tick only around a third, as I:

  • Never wear shoes I can’t walk in – er, yup. Tick. Huge tick.
  • Would never have Botox – I quite like smiling.
  • Would never own a handbag dog – my cat would disown me.
  • Can handle a sports car and a sit-on mower – does a JCB mini-digger count?
  • Know when a man is spoken for – aren’t they all?
  • Offer the builder a cup of tea – oh yes, and cakes, biscuits and bacon butties. 
  • Cook perfect, crispy roast potatoes – I can, I just choose not to. 
  • Know songs for long car journeys – ‘The Laughing Gnome’ by David Bowie and ‘500 Miles’ by The Proclaimers. Sorted. 
  • Knows how to let a man think it’s his idea – it’s why I’m so good at my job …

Otherwise, I fail miserably. Mind you, some of the points make me wonder exactly what a ‘lady’ looks like in 2015:

  • Can paunch a rabbit, pluck a pheasant and gut a fish, but allows men the privilege – Downton Abbey lives on.
  • Can imitate Piglet and Pooh voices for a bedtime story – back in the day, it was ‘Bob the Builder’ and ‘Pingu‘.
  • Knows when to deadhead a rose – when it falls off?
  • Knows when to take control in the bedroom and the boardroom – hmm. I don’t have a boardroom.
  • Owns a little black dress – nope, I have skinny black trousers and natty flat shoes.
  • Always has a hanky – I truly fail to see how this could make anyone a lady.
  • Can silence a man with a stare and make a dog lie down with a hand signal – and vice versa – if I had this skill, my life would truly change. 

So it seems I am nowhere near being a lady. But you know what? I don’t think I’m missing out. I like handling a massive SDS drill like I was born to it. And I love driving a digger. But I also like shopping for a gorgeous new top and taking two hours to get ready to go out.

MS has pushed me to my boundaries and beyond. It’s only now, at my age, that I am discovering that I really can be … me?

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Aug 07 2015
40 Comments
My Ramblings

Rewriting The Relapse …

mehIn the short space of writing my last post, I have had three emails asking/demanding to know:

‘If you’re having a relapse, how come you have the energy to write about it?’

‘Don’t get it – if you can get to a keyboard, you can wash up.’

I expected this.

I had an in-depth conversation with my mum and one of my sisters last night about the same thing.

They understand that my outlet is blogging, writing, whatever you want to call it.

In short, there is no one else here. It’s just me.

So you guys, sorry, are my outlet.

Which is the beauty of social media. It’s called ‘social’ for a reason.

I remember so vividly how comforted I felt when I posted one of my blogs. I was in a bad way and the support came flooding back. I was not alone.

That’s the point.

This blog is my venting point, my working-out-my-emotions-point.

Yes, I still work. I work hard. And when I get home, it takes me at least three hours to recover. The Teenager will tell you the same thing.

I am exhausted. And alone. So, yes, I reach for the keyboard. And I don’t really think I should be judged for that?

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