Tag Archives: relapse

Pre-Relapse Stress Syndrome

worryAnyone else have Pre-Relapse Stress Syndrome?

After a rocky road back to some sense of recovery following my third course of Alemtuzumab in September, I am once more mired in my usual emotional mode – worrying about when the next MS relapse will strike.

Considering my last relapse began next to the hot-dog-and-fries stand in Ikea, I have reason to worry.

One minute I was holding a well-thumbed Ikea catalogue in one hand and a hot-dog in the other when splat, I was catapulted into outer MS space, floating around, my legs turned to jelly, my brain to mush.

I dropped the catalogue, but managed to hold on to the hot dog as I tried to tell my mum something was very, very wrong and it had nothing to do with the ketchup pump being out of order.

I don’t know why I was so surprised. I’ve had relapses start in random places before – walking up a garden path, sitting in a cafe eating a slice of carrot cake, in the middle of a book shop.

And there’s where the stress lies; it’s the Not Knowing. You can’t make a contingency plan. It’s a bit like having an MS UFO permanently hovering around just waiting to zap you up, mess around with you and spit you back out again.

I try to get on with normal life – my usual routine provides the solid framework I cling to. If there’s something I begin to struggle with, I’m suddenly alert. Dropped a cup? Poured boiling water over my hand? Walked into a wall? (hello again).

It’s not a great way to live, but it brings me back to mindfulness I wrote about in my last blog post – taking and experiencing life as it comes. Not projecting forward, just remaining in the moment. Om.

It’s definitely harder than it sounds. The slightest thing and I’m panicking. The relief when an episode comes to nothing is immense.

As it goes, I haven’t been back to Ikea since February. The trauma is still raw.

But. I could really, really do with ordering a family-sized hot-dog meal and eating it all by myself.

I blame the thyroid meds.

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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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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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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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How Little Is Too Much?

duckWell, this relapse trundles slowly on.

I’m still wading through the days, clutching on to passing moments of clarity and tiny pockets of energy.

Thanks to Ocado, The Teenager is fully-stocked with his Special K and baked beans, his latest requests thanks to his new training regime (his muscles are shaping up nicely – very impressive, especially when compared to my flabby efforts).

The cat has her Whiskas and Dreamies. We have Bloo in the loo, milk in the fridge and blessedly, Ocado even delivers stamps. So on the surface, we’re doing just fine.

Take a look underneath and it’s a slightly different story.

The paperwork pile is a mess of unanswered letters. I haven’t taken my meter readings – too much effort to bend down into two different tiny cupboards with the torch on my phone to squint at the teeny weeny numbers.

The cobwebs are multiplying at an alarming rate. The vacuum remains silent. I’m still doing the bare minimum and it’s exhausting.

After waking today from a three hour afternoon kip (I mean, really), I tidied the kitchen then sat down. I opened the mail, then shoved it into a corner. Time for another little lie down. The smallest things take forever.

But I will not be beaten. I know I’m playing a tricky game. I keep on pushing myself, over and over again. It’s the thought of going back to those awful couple of years when I was coping with relapse after relapse. I just cannot return to those long, dark days, spent shut inside my house.

So I continue ‘as normal’. I still go to work (The Boss would totally disagree with this statement). What my colleagues don’t see though is my state of utter collapse when I get home. I still meet up with friends, ignoring my spaced-out state and heavy eyelids. I pay for it afterwards. But it’s worth it.

I just worry that I’m pushing myself a little too far. Apart from the relapse affecting my walking, speech and balance, I’ve now got a throat infection, making swallowing a real pain.

However, on a much, much brighter note, I had a wonderful phonecall from my MS nurse this afternoon. The MS team has recommended that I have a third course of Alemtuzumab (Campath).

There is light at the end of the tunnel. And this time, it’s not an oncoming train.

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