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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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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The Plastic Revolution

food processorAfter an awful couple of weeks (health, blah blah, vicious people blah blah), I have found ‘The Answer’.

Who would have thought that a modest plastic thing with two settings – plus a turbo boost – could bring me such joy?

Yes. My brand-new food processor has revolutionised my life.

I was standing there the other day feeding bits of butternut squash into it, the mash part of my vegetable pie. It may have taken a couple of years but I’m now embracing a much healthier diet, spurred on by the daily weight increase thanks to the dratted thyroid meds.

Anyway. There I was, letting my mind wander when it came to me, ‘hang on, why am I feeling this despondent about recent goings-on, all of which are outside my control?’

Hmm. This scenario was beginning to sound boringly familiar. A bit like MS.

As luck would have it, I saw my lovely neurologist last week who mooted a third course of Campath as there’s a couple more lesions, one which was active, on my last MRI. We chatted about it and it was obvious I was going to take the damage-limitation path and choose a third course.

So, my MS is, for now, manageable.

People, sadly, are not.

I’ve learned that if you keep getting cannon balls lobbed at you, you begin to duck.

Then you walk away.

Back to my food processor. I stumble home after work, a new recipe already printed off, ingredients waiting for me in the fridge. I chop, blend, pulse and pulverise. It’s unexpectedly therapeutic.

With no small amount of serendipity, The Teenager is also going through seismic changes. Hold the front page – Dominos has lost one of their most faithful customers.

He is going to the gym five days a week, losing the pounds and toning up. I’m currently researching chia-seed  and flourless birthday cake for next month when he turns 16. However, we have yet to get over his aversion to onions, red peppers, garlic, apples and porridge. Give it time.

So, where are we? Me and The Teenager are doing just fine. We’ll both get through this and we’ve both got a whole lot to look forward to. At times it seemed our little family unit might implode under the dual pressures of MS and those few rogues intent on making our lives a misery.

They can pack up their cannon balls and leave. And let us get back to what we enjoy doing the most – looking after ourselves.

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The Year Of Tragical Thinking

tragedyI’m a bit weird, in that I seem to celebrate my own personal New Year around the time of my birthday.

Which, I hasten to add, isn’t for three whole weeks.

Anyway, this time last year I could still be found in dark corners, lamenting my fate.

I mean, really?

Sure, I had MS, was fat, single, wrong side of 40.

And today?

I have MS, am fat, single and the wrong side of 40.

So, what’s changed?

Well, I think I have finally found some backbone, even though my spine is yet to be MRI’d. But I’m sure it’s only a matter of time.

I’ve been trucking along, picking up the pace when MS allows, making sure The Teenager is ok, ensuring our household is running smoothly and the kitten is fed, yet all the time in the background there’s been certain people hovering, just waiting to see me trip up and make a spectacular fool of myself (I wish I was making this up).

And it would have been so easy. Almost too easy.

I’ve often wondered what drives people to make other people utterly miserable. What possible enjoyment do they derive from it?

And there’s the nub. I’ve spent far too long thinking about this. A very tragic, very long year. Years probably.

I watched an excellent programme the other day, ‘Before I Kick the Bucket’ on BBC ( I urge you to download it and follow her on Twitter – @B4IKTB). A woman explains she will probably die soon from breast cancer. Puts life into perspective, Big Time.

I can sort my weight out. I can join Tinder (lol). I can accept a third course of Campath. But I will never be able to change other people’s perceptions of how I am failing miserably at being … me.

And if that’s not enough to get my soggy brain around, I don’t know what is.

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Parallel Lives, Sliding Doors

appleEver wondered what your non-MS life would look like?

I have. Frequently.

On that fateful day in 2011, when I woke up into a nightmare, I often imagine how it would be if it were just another Saturday.

I would schlep around a flea market, buy some artisan bread, laze around on my sofa like there was no tomorrow.

  • I would still be a trusted member of the team in my workplace. The very idea of being sacked for having an illness such as MS (when we, as a company, prided ourselves on, ‘allowing our customers to reside at home as long as possible, with a little care‘) would have seemed like a bad dream.
  • I would still be in a relationship.
  • I would still be an active parent.
  • I would still be awake at normal hours.
  • I would still cook everything from scratch.
  • I would still have a fully-functioning brain.
  • In short, I would be trucking along, just as always.

Instead, I woke up into a beautiful, cloudless day when all that was missing was my power of speech and my balance.

There were no warning signs, nothing unusual, although I was a lot more tired over the previous six months. But that was all it took – a massive, life-changing relapse and everything had altered.

I lost my job, my partner, the trust of my child and my future.

But what did I gain?

Well, when I look back, I would still be in a soul-destroying job, still in a dead-end relationship and still be oblivious to the wonders all around me. Ok, so my brain might not work properly, but what’s writing creatively without a little struggle?

I gained a new direction and a new purpose.

Not all to do with MS – like a lot of you guys, it could have been any life-changing illness. It just makes you wake up, take stock and steer your life in a whole new way.

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