Jan 12 2016
10 Comments
Emotions

When Life Turns On Its Head

changeLife has a strange way of shaking things up.

Brutal, unexpected and shockingly painful.

A close family member has been taken quite seriously ill and normal life has been suspended.

It might be a cliche to say, but you really do find out just how strong you are when the chips are down.

I’ve been surprised at my inner strength, something I can only attribute to my trials and tribulations through MS.

This last week has been extraordinarily challenging, emotional, cruel and exhausting.

I’ve slept at odd times, eaten junk, had so many cups of coffee, I’ve lost count.

But through it all, life has to go on.

The Teenager has been superb, although my instinct is to protect him. Thankfully, his life is continuing as normal as possible. My family has rallied round and I think we’ve rekindled latent bonds.

I find myself with a whole host of new responsibilities, but we share them. When I feel lonely and lost throughout this, I know I have support.

Of course, MS has been making the most of it all and is up to its usual tricks – more foot drop, more tiredness, walking into walls, falling over my rugs. But for once, I’m dismissing it.

Sometimes – not often – but sometimes, life is bigger than MS.

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Jan 07 2016
10 Comments
Daily Life

The Chubster Goes To The Gym

chocIt’s January, and so far I’ve been to the gym three times.

I’ve also cooked at least five healthy chicken dishes.

Don’t faint with shock.

Okay, so I drove to the gym but waited for The Teenager as he exercised for an hour. Luckily, his gym is on a retail park, so it would be rude not to look round the shops.

I’ve bought a pizza and some yoghurts from Marks and Spencer’s, shampoo and conditioner from Boots (which promised to give me luscious, luxurious and nourished hair – they lied, it’s still straw-like), a candle from the Laura Ashley sale and three Starbucks soya lattes (healthy).

Going to the gym is costing me a fortune.

I’m actually rather envious of The Teenager and his absolute dedication to getting fit. I have no idea where he gets it from. The other night I was settling down in front of the telly with a bag of crisps when he bounded downstairs, heading for a bowl of Special K and skimmed milk. He saw me, plucked the crisps from my hand and read out the calorie and fat content in a horrified voice, wagging his finger.

He’s helpfully suggested gentle exercises and talked me through the proper way to do bicep curls (surprisingly similar to the Malteser box-to-mouth action). And all this while I’m trying to cook or finally finish my essay.

He was chatting away the other day, pondering the price of tuna steaks when he asked me what my New Year resolutions were. Hmm. Good question. I hadn’t really thought about it as I normally give up by the second week in January.

Anyway, he pressed me to come up with five things I wanted to do in 2016, so here they are:

  • Begin a proper, grown-up skin care regime with at least five steps.
  • Learn how to wear scarves in a French-like manner. Or Danish.
  • Grow herbs on my kitchen window-sill without killing them.
  • Make my own bread, brownies and chia seed porridge.
  • Take up calligraphy.

The Teenager was distinctly unimpressed …

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Dec 31 2015
32 Comments
Emotions

You Do Not Have To Be Alone With MS

aloneOn the cusp of 2016, this is a post to thank everyone for their wonderful support for me and my blog over the last three years.

You’ve watched me grow from being bullied and sacked simply for having MS, changing career, coping with three courses of Campath, going back to university and most importantly, bringing up The Teenager despite MS.

 

MS can be a lonely, frightening and isolating illness.

It doesn’t have to be.

If you are reading this and you are feeling alone, please reach out. There are fantastic Facebook groups, tweeps on Twitter and blogs you can connect with. It can be a relief to be amongst people who just … understand.

Whether it’s making sense of foot-drop, cog fog, wibbles and wobbles, there’s a lot of us who know exactly what you’re talking about.

Personally, I don’t know where I would have ended up without the help and encouragement I’ve had from other people – my blog has been a lifeline. Every single comment has helped and I can’t begin to thank you all enough.

My wish for 2016?

I don’t want anyone with MS to suffer in silence.

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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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Dec 19 2015
8 Comments
Emotions

So You Can’t Miss What You’ve Never Known?

Dad2It’s strange.

I grew up ‘knowing’ my dad died of MS.

I was guided to a window shortly after his passing and shown him travelling to heaven.

A lot of people get angry when I tell them this  – you don’t die from MS.

Well, back in 1978, you did.

There were no MRIs, no disease modifying drugs, nothing.

Technically, he died from a complication arising from his MS; in my mind, he wouldn’t have had this complication at the age of 35, without having MS. Which came first?

So, yes. It was normal to grow up with one parent. I missed him at seminal points in my life and often wondered how he would laugh, how he would hug me, how he would sit down with me and put the world to rights. How he would protect me. I strove to bring the photograph to life to no avail.

When people found out my dad died when I was four, they were sympathetic, of course. And I would reply,

‘You can’t miss what you’ve never known.’

I was adamant. A protective mechanism?

I now stand corrected. You really, really can.

At 37, broken and alone, I missed him more than anything.

Think of the conversations we could have had! I would compare symptoms, speak with someone who understood exactly what I meant by ‘fatigue’, ‘nerve pain’, ‘abject terror’. He would have held my hand and understood.

When I was going through the diagnostic process, I felt closer to that figure in the photograph than never before. Now I knew. Now I had an inkling of what he had gone through.

It was this that made me choose Alemtuzumab as a treatment option – I was going to blast MS with everything my dad never had. Call me sentimental.

On this sentimental strand, I would like to think he would be proud of me and all that I have achieved, despite MS. Sure, I have collapsed, reached rock bottom and felt like there was no tomorrow.

But everything I have done since, whether it is making The Teenager toast or writing a book, it is all with my dad at the back of my mind. According to others, he was intrepid, fearful of nothing.

I would like to think I have picked up where he left off.

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