Tag Archives: multiple sclerosis

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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Aug 07 2015
6 Comments
Symptoms and Treatment

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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Aug 03 2015
14 Comments
My Ramblings

Relapse! A Game The Whole Family Can Play

GamerSadly, an MS relapse never comes alone.

It brings with it problems and complications for everyone.

In my case, mostly for The Teenager.

Luckily, my mum took my exploding pile of laundry back to hers, and I had already made a batch of green lentil lasagne for the freezer, which I’ve slowly been grimly chomping my way through, The Teenager preferring beans on toast (which he makes, result!).

So, yes, the biggest problem I have right now is navigating my way through this relapse, making sure The Teenager is ok. Money helps. As do his friends.

There’s a fine line between total disclosure and discreet hiding for kids and MS. They need to know enough not to worry too much. It’s their childhood after all.

I’ve become an expert in abstract usefulness – as soon as he’s around, I’ll ‘busy’ myself with some random task, in the hope that he’s reassured. I/we can’t escape the inevitable tiredness. It’s there for all to see. But, in the ‘up’ time, if I can still keep our show on the road, then I am winning.

A work colleague asked me recently how I managed a relapse without a partner. ‘Badly’ was my answer. There’s no one to take the slack. But it’s fine. We muddle through.

With my brain so concentrated on getting through this, I am an avid listener. As parents, we often tune out our Teenager’s rambling (at least I do) as we’re so busy catching up on Things That Must Be Done. These past few days though, I have debated (lying on sofa with blankie) the merits of Ed Sheeran versus Nirvana, his play-list of catch-up series’ and the beauty of his Pulp Fiction poster (discuss). It’s been illuminating.

He’s been very patient, although he does have a captive audience. I just lie there, directing. And you know what? I told him where the drill was and he dismantled his old wardrobe. I gave him a pile of coat-hangers and he hung up his clothes. I pointed him in the direction of the vacuum. And he found it. A joyous moment.

So a relapse is bad news, but with it, hopefully, there’s been some silver/teenagery linings. We’re no longer in the emotional meltdown arena of a few years back. I guess you could say we’re both finding – and stumbling – our way through this.

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Aug 02 2015
26 Comments
Symptoms and Treatment

Here We Go Again …

RelapseYou know how it starts, that ‘whoops, where’d my brain go?’ sensation.

That out-of-the-world feeling, the disconnection, along with the overwhelming fatigue, stumbling, mangled words, etc.

It must be Relapse Time.

MS has flicked through it’s malicious diary, thought, ‘hmm, let’s see, last one was in …. oh yes, February. I’m thinking August sounds about right. Bring it on and let the games begin’.

It started three days ago and I’m struggling to get the bare minimum done. And by bare minimum, I mean barely getting by with the minimum. The washing basket is overflowing, the paperwork is mounting up and I’m re-reading the same page of my novel over and over again. Some bright spark chose ‘A Suitable Boy’ by Vikram Seth for our next book club. 1500 pages. I may have to Wiki it.

On the other hand, The Teenager is having a fabulous time shouting out, ‘watch the wall!’, ‘d’oh, there goes another plate’ and ‘nah, don’t understand what you’re saying, soz, that’s not even a word, muvver.’

Luckily at work on Friday, there were loads of people on site, so I was able to sit in a corner pretending to look at complex building plans. Whenever anyone walked past, I whipped out a pencil and appeared to be calculating steel beams and floor boards. I got away with it. Back home, I stumbled to my sofa, collapsed and lay there for three hours.

I physically couldn’t get up. I wanted to, I needed to get stuff done, make dinner, appear normal, be a mum. I simply couldn’t. The Teenager came downstairs, modelling his newest t-shirt. I cocked an eye open, told him how lovely it was and apologised. What more could I do?

The next day, I woke up, yawned, went out for the essentials, yawned, came back home and went back to sleep. When I woke, I yawned and thought about going back to sleep. I stumbled to the kitchen, yawning, dropped a plate (this one bounced) then back to the sofa. And repeat.

The only ‘good’ (and I hesitate to use that word) thing about a relapse is that it concentrates the mind right down to the base level. If you can just drag yourself through the day, that’s an achievement. Nothing else matters. All the stress of the last few weeks means nothing when you’re gripping bannisters and falling over in the kitchen.

The aim is to get through this as quickly as possible, to yank my brain back from it’s wanderings. To rein in all the physical symptoms so that they’re more manageable. In short, to become me again.

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