Monthly Archives: August 2015

Aug 18 2015
22 Comments
Symptoms and Treatment

Third Time Lucky …

campathMy MS has been slowly getting worse again, so I’m booked in for a third course of Campath (Alemtuzumab) next month.

I had a sneaky relapse earlier this year and another one just the other week.

First off, I know how lucky I am to be eligible for the treatment; the earlier two courses put a stop to the relentless grind of relapse after relapse.

I got my (so-called) life back on track. Things were good. Until they weren’t.

So now, at the busiest time in our work’s history, ever, I’m frantically sorting out details:

The Teenager – he will (hopefully) be embarking upon his A Levels (all will be revealed on Thursday). I want to make sure he’s settled and happy before the Campath. My wonderful friend, who lives just down the road, will be having him for two nights.

The Cat – she has a reserved place at a cattery ‘overlooking beautiful Welsh countryside’ and her cat basket is safely stashed in my car boot. With her favourite blankie.

The University – which starts two weeks after hospital. Gah. I’m booked in to sort out a scribe, in case I’m not well enough to attend that all-important first lecture.

The Book Club – a week after Campath. I have diligently started reading ‘A Suitable Boy’, all 1500 pages of  it.

And as for the hospital trip, after the last two times, I’m feeling more than prepared. I will bake a batch of chia-seed energy bars to take with me, should the snacking compulsion overwhelm me. No more Jelly Babies and Maltesers. My mum has offered to bring in fresh salads and tempting-yet-healthy treats.

No books this time, certainly not ‘A Suitable Boy’. ‘Erm, excuse me, would you please stop screaming through your lumbar puncture, I’m losing my place. Ta.’

Pillows, natch. Favourite blankie (it’s not just the cat). Stash of magazines, from which I will snip out a pile of ‘must-buys’ before binning them. Ear-plugs, notebook to scratch down my very important musings upon hospital life, mobile phone, herbal tea bags, a few tea lights to brighten up the ward in the evenings.

It will all be fine. What could possibly go wrong?

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Aug 16 2015
4 Comments
Symptoms and Treatment

You’re Back In The Room …

RelapseI was in the van with The Boss last Friday, nattering away about my new devotion to chia seeds and almond flour, when, blam, there I was.

I gulped, slightly surprised, then said,

‘I’m back! I’m really … here. Wow.’

The Boss rolled his eyes. ‘You never went away. Believe me.’

‘No, really, I just know, I know, this relapse or whatever it was, it’s just suddenly gone.’

‘What, so can like, do some proper work now? And what the heck are chia seeds anyway? Actually, don’t answer that.’

It’s impossible to describe the sensation a relapse brings with it. Not just the usual problems, the tiredness, the wading through cotton wool soaked in treacle. It’s the disconnection, the sense of otherness. The sensation of being apart from people. It’s lonely.

For two weeks I’ve simply been focused on getting through the days. And this time around, I made sure I was still out and about, no matter how airy-fairy I may have seemed to everyone else. Please excuse my feet, dodgy hands, the slightly glazed expression.

For me, relapses descend quickly. I know the warning signs – the buzzy head, fuzzy brain and wuzzy feelings in my body. And just as quickly, they leave. Although they always leave behind some extra little symptom I never really had before. And the usual suspects remain.

I remember asking an MS nurse all those years ago, ‘but how will I know I’m having a relapse?’

She replied, ‘Oh, you’ll know.’

And she was right. Just like when I asked my midwife how I would know I was in labour. After she stopped laughing, I kind of got the feeling, yup, I’d know. She was right, too.

Anyway, the end of a relapse brings a certain clarity. The fog lifts and I realise just how much I’ve let slide. Which is fine. Life still goes on, despite it all. My mum very kindly disposed of the pigeon my cat wrestled home one morning and has brought me pesto salads and boxes of onion-y things to chomp on when I’m too tired to cook.

The Teenager gets his exam results and turns 16 next week, so the timing couldn’t be better. I tried to arrange a birthday meal with him the other day (having booked the day off work). I got a text back, ‘Can fit you in for brunch, 10.30 to 11.15. Any good?’

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Aug 13 2015
20 Comments
Daily Life

Birthday (Cake)

birthdayYup, today I am another year older but not much wiser.

However, in my ongoing bid to become a responsible adult, I decided to take the bull by the horns and do something I’ve never done before.

There’s a special occasion coming up next month and after gazing at my pre-thyroid wardrobe, I realised I really do have nothing to wear.

So. Get this – I booked in for a personal stylist appointment at John Lewis. I know. Me!

I drove into town, parked up and had a coffee in the local bookstore’s cafe, ear-wigging at the French for Extreme Beginners group meeting being held next to me. Quite excruciating, but their seriousness was inspiring. They caught the waiter’s eye and yelled ‘Garcon!’ in unison. Ah.

Anyway, I arrived at the due time this morning and was quickly ushered into a little room full of mirrors. Great start. The lovely stylist made me stand up and turn around. Before I knew it, he’d pulled my loose-flowing shirt tight, showing my muffin top off in all it’s glory.

‘I see‘, he said with a certain level of gravitas.

He dashed off with a rail and I sat there for ten minutes, glaring at Cara Delevigne on the front cover of Vogue.

Against all hope though, Boy Wonder The Stylist arrived back with five garments. Each of them was perfect. Divine. Behind my heavy velvet curtain I sighed and stared at my transformed figure. The clothes were beautiful.

He was a genius. He had picked the perfect outfit. Simple, comfortable, and most importantly, stylish with flat shoes.

I paid and floated out the store on a shopping-induced high before foot-drop tripped me up and me and my John Lewis bag – clothes exquisitely wrapped in tissue – went flying outside the Apple store. Red-faced, I gathered myself together with the help of two pensioners and got back to my car in one piece.

p.s. I’m not actually 42 until 8.04pm tonight.

p.p.s. So I still have a few hours in my very early 40’s.

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Aug 11 2015
8 Comments
Daily Life

S’Fine …

tiredI’m fine.

I’m absolutely fine.

I’m still doing the laundry, still using my hand as a duster round the visible ornaments.

Still pushing the vacuum half-heartedly through the pathway from my front door to my kitchen.

Whilst languishing on my sofa (the cottage is that small, honestly).

S’fine.

It’s the relapse trick – look useful and, ok, you’re … fine.

Which I am.

After work today I had my wonderful friend and her two children over for coffee. We are Uni mates and needed to catch up before the new term.

She greeted me with, ‘Wow! You look fab!!!’

Which is lovely. I had made An Effort. I even dug out the duty-free Clairol lippie I’d bought on a scary whim after being ganged up on by four beauty consultants in Dover. I had scrunched my hair into a random bob. I dressed in loose clothing and slouched in what I though was an effortless, writerish sort of way.

I really do think relapses are an exercise in deception.

Don’t get me wrong, I’m sure if you have a partner/husband/wife, they will soothe your brow and take over. Not in my case. I sneak and deceive.

I rummage plates and bowls, clinking them together. I sigh loudly as I change a toilet roll yet again. I rustle the recycling. Loudly. Anything to be visible. ‘Look, I’m doing something.’ I really don’t want to crawl into bed and pull the covers over my head. Honestly.

I clank and bang around the house, an orchestra of a relapse.

In amongst it all, I just want to lie down. My sofa calls me. My bed calls me. I could lie down. I really, really could lie down. But I can’t. So I noisily chop and de-seed red peppers (actually quite difficult), and cry over the onions. I bang the tray into the oven.

I’m still here. I’m in the kitchen and I’m doing something.

Then The Teenager tells me he’s spending the evening camping with friends and can he have a fiver for the curry?

Oh.

Ok.

I supervise his packing. I stop him stuffing two of his brand new feather pillows into his rucksack. I tuck some money in and wave goodbye after a shower of Lynx and, well, more Lynx.

I got away with it. For now.

And. I can go to bed early.

Result.

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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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