Aug 28 2015
4 Comments
Symptoms and Treatment

Life, Interrupted.

lifeI’m all booked in for Campath (Alemtuzmab), Round Three in mid-September.

Only problem is, so is The Teenager for his A Levels and me for my second year of the Master’s. Oh, and work.

My mind is spinning with lists, plans, worst-case-scenarios. And what on earth do I write about for my dissertation?

Luckily the pesky MS melancholia has lifted somewhat so I am no longer drifting aimlessly around the cottage full of angst and woe. Instead, I am bumping around the house like a pinball wizard, clutching bits of paper.

I really didn’t see this third course of treatment coming. I had imagined it somewhere else, years and years down the line. When perhaps I could stay in hospital and knit myself a bed-jacket and thumb through old copies of People’s Friend. And maybe commiserate with the lady next to me, bless.

In reality, I’m rushing around in between work, buying pyjamas, slippers, mini bottles of shampoo and conditioner. The Teenager is sorted. The cat is sorted. I’ve told Uni. I’ve ordered a pile of books to read when I’m off work.

In amongst all this rush, I need to take a step back and … breathe.

After my last relapse lifted, I was doing just fine until yesterday when MS slapped me once more right  in the face: I was suddenly pole axed. I staggered home from work, crawled to the sofa and fell asleep. When I woke up, I rationalised it, ‘it’s a one-off, it’s fine, it really, really is fine.’

Today. Before a thyroid appointment at hospital, I fell asleep. It’s fine.

And this is MS in a nutshell. You just never, ever know how it will be. From one day to the next. Like most of you, I wake up every single morning not knowing what MS has in store for me.

Funnily enough, the endocrinologist asked me when I last felt awful. I consulted my Little Book Of Symptoms (Both Weird and Fairly Normal) and said, ’29th July’. She looked at my blood test results, ‘oh, yes, there was a blip then, did you feel anything strange?’

Well, that’s a very, very long story …

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Aug 24 2015
16 Comments
Emotions

Sad, Sad World …

tedReally?

What is it with MS?

This melancholic feeling has descended like a lump on my life. And I hate it.

Yeah, yeah, life is hard with MS, but I mean, really?

It started when I drove home from work (a very good day, as it happens).

I sighed. Then I sighed some more, from deep within. And I felt a little bit sad.

Gah.

(lump on chest)

I got home, made a coffee and thought about it, then I sighed a lot and felt a whole lot sadder.

MS. A license to feel like crap. Except I didn’t want to.

I struggled against it. I organised my scarves (a tick on my to-do-before-campath-list). I shuffled through my herbs (another tick).

I cannot say how this melancholic feeling descends. It really is out of the blue.

Life trucks on in a great way, bizarrely- I sent my book off for an award and I bought some Brazil nuts for breakfast.

So what is this stoopid MS nonsense?

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Aug 20 2015
14 Comments
The Teenager

Now I Know My A, B, C’s

examsExam results day for The Teenager.

Bitten nails, late-night angsty-chats with friends, contemplating the future.

And that’s just me.

These last couple of months have been an exercise in diplomacy, negotiation and extreme patience:

 

‘I’ve failed. I know it. I just know it. I have. So there.’

‘You haven’t.’

‘How do you know?’

‘Well, um. Ah. Good point. You tried really hard? And, you went through a lot of post-it notes?’

‘S’not fair. I bet the exam markers hate me. Maybe they couldn’t read my writing.’

‘I’m sure they’ve seen it all, don’t worry.’

‘Mum. You’re, like, so not helping. Please, leave me to my despair and close the door behind you, ta.’

This morning, finally, we got here. The Teenager plonked himself with a grunt onto the sofa and watched beaming kids opening their results live on telly. Probably not his best idea ever.

I went to work (after offering to take the day off and do something nice, like feed the ducks), put my phone on loud and waited. And waited. Phone rings.

‘Muuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuum.’ (heavy panting down the phone)

‘Hello dear!’

‘Muuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuum! I’m in!!’

‘Wonderful! In what, dear? In school? To get the results?’ (non-committal, just in case)

‘D’ur!! Like, I diiiiiiiiiiiiiiiiid it! I passed, gonna do my A levels, do my A levels, yay, like A levels.’

Phew.

I collapsed in a crumpled heap outside work.

‘Muuuuuum, just one problem.’

Gah.

‘You know how I have to register for the next two years? For the A levels? Well, like, I threw out my results from last year. By mistake.’

Oh.

Long story short, I left work, took him to school and he got a print-out. Sorted.

I dropped him off at a friend’s house before heading back to work.

I was a wreck. He’s out celebrating.

It’s all good. We got there in the end.

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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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