Tag Archives: The Teenager

It Takes A Village …

MS is hard enough on your own body and soul, but witnessing your child coming to terms with it in a parent is heart-wrenching.

Up until he entered High School, me and The Teenager did a whole lot of things together; I was forever picking up leaflets, magazines, nabbing numbers and ideas from flyers.

We fought dinosaurs, made shields in a castle and painted pottery.

I sewed badges on swim bags, then faithfully unpicked and re-sewed them on to new bags. I bought uniforms, day trips and packed the lunches.

I stood at the rugby sidelines weekend after weekend, freezing cold, following him to tournaments miles away, in the rain, without ever mastering the rules of the game. I picked him up after injuries and faced the long journey home, but with a medal or mini-cup clasped in his hands as he fell asleep in the back seat.

I’m so glad I had that time as everything was set to change.

Just as he put on his brand-new High School uniform, MS hit. His once-active parent was more often than not going through relapse after relapse.

We factored in three Alemtuzumab treatments to coincide with his summer holidays – after coming home with no immune system, I had less than two days each time to be back to ‘normal’ after he spent time with his father.

It takes at least a month to recover an immune system.

The Teenager saw a lot and he didn’t like it – the enforced sleep, the early bedtimes of his main parent, when I should have been the one getting him to sleep.

The utter fatigue and lack of immune system floored me. Luckily, kind parents filled in a lot of gaps, taking him to rugby, standing in on Parent’s Evening, inviting him along to sun-drenched trips to the beach.

But I cried; it should have been me. Yet I was so tired, I couldn’t get my head around it. Instead, I tried to ‘stay present’. If I could not move from the sofa, I would at least try to remember everything that was going on.

And now we have The Teenager at University, having the absolute time of his life.

It’s not just thanks to me, it’s thanks to friends and family, everyone who has ever followed him on my blog, or who has met him in real life and chatted with him like old friends, and to everyone who has ever made him feel that he is not alone.

Significant people may be absent from his life, but he knows that he has a whole support network to call upon.

Watching him at an MS filming session last weekend, I was stunned to hear him speak so coherently and poignantly about his experiences and as soon as I can, I will share it with you.

In 2012, all I asked for was to be well enough to see my son off to University. I firmly believe that thanks to everyone here, he made it.

I certainly didn’t do it on my own.

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Just Go For It …

A small film crew is visiting my even smaller cottage on Sunday, to create a short film of my life with MS.

I had great chats with both the producer and creative director this week, working out the best angles and what to focus on.

Here’s what went through my mind:

Best angles – will there be a make-up artist?

Can I be contoured and strobed to slim my pudgy face down?

Will there be a generous amount of Photoshop in the final editing?

My cottage is dark (yay), almost like being candle-lit. Result. Then I found out they’ll be bringing super-strong lighting. Meh.

Focus – we chatted about my life with MS, what inspires me, what motivates me. Writing seems to be the strong theme – in fact, it seems as if, through my blog, I am writing my way through MS?

All this got me thinking. They will film hours of footage, to be reduced to a few minutes. What do I want to convey? What is important?

For me, the beauty of writing is that I can make mistakes. I can delete, add, rewrite. Perfect for MS; I’m the one in control, even if my dodgy typing fingers have other ideas.

However, I’m understandably anxious as I’m probably the least photogenic person on the entire planet and I have a slight lisp. Plus a Scottish accent. And the pudgy face. Hair up or down? I haven’t been to the hairdresser since January.

Despite all the negatives, I said yes.

What does it matter? I may carry a little more weight (ok, a lot, but I’m working on it). I may have a pudgy face (perhaps they can film me from the nose up?). I may lisp, but that’s me.

Ultimately, I think I have a lot to say, and a lot to talk about. Sure, MS was a wrecking-ball, but we rebuilt and I think this will shine through.

You heard it here first, but we also have The Teenager on record, agreeing to be filmed. He might not wake up until 1pm, but he’ll be there. After all, he is the main focus and the reason I get up every day and carry on.

Do you think they’ll send a catering van?

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Well, We Did It?

The Teenager turned nineteen yesterday.

My incredible son, who has had to cope with MS from the age of eleven.

Could there be worse timing?

MS was instantaneous for us – no warning, no real preview of the devastation to come. He went away for the weekend and when he came back (picked up by a friend as I was in hospital) everything had changed.

Suddenly he was thrust into a world where his main parent was ill.

I was the mum who had taken him to, and picked him up from nursery, primary school, breakfast club and after-school club. I was there at the sidelines for rugby and sewed badges onto swimming trunks and Beaver’s outfits. I checked over his reading books, helped him build castles from cardboard and sorted outfits for school plays.

I was ever-present and then suddenly I wasn’t. We both had to learn to live by very different rules and it wasn’t pretty. I was in and out of hospital, the Doctor’s, various clinics, alongside coping with an employment tribunal. And there he was, starting High School.

I fitted three courses of Alemtuzumab around his school holidays, specifically booked in for that reason. After my second course, I had 24 hours to get back on my feet and be there for him coming home, not easy with zero immune system.

But we muddled along, and my sofa became the ‘command centre’. I had my blanket tucked behind it and could whip it out at a moment’s notice. I jotted down important points, dates, friend’s names, anything I could to keep up to date with everything that was going on.

For both of us the most difficult symptom was the fatigue. I always tried my hardest to stay awake until his bedtime and a little bit extra, to appear, ‘normal’. Now he is back home for the summer Uni break and goes out for the evening, he says, ‘you can go to bed at whatever time, I’m out.’ And a little bit of me dies inside. I know that he knows that I know.

MS has been a terrible learning curve for both of us, but we got through it. I had friends I could confide in, ask for help from. The imperative was to give The Teenager as normal an upbringing as possible. It didn’t always work out that way and I will always regret that.

Yet now, here he is, a super-confidant young man.

In my blogs I normally whinge about The Teenager (as you do), but today I’m going to say how proud I am of him. He made it easy. His inner strength saw him through the worst.

I’m impressed at his resolute attitude and his sheer enthusiasm for life. In short, I love him to pieces.

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Grand Theft Auto (Immune)

Sometimes, life with MS feels just like that pesky game – the bane of my life when The Teenager played it for hours on end – sitting at the wheel of a very fast car, out of control, driving around with no regard for anyone else.

MS is such an all-consuming illness, affecting every area of our lives.

Six years after being diagnosed, I still feel as if I am shaking the branches of a tree, seeing what falls out. What have I forgotten to deal with?

Serious illnesses are often portrayed as ‘monsters’, ‘the demon’,  an ‘enemy’, something external, something to be conquered. If you’re ‘lucky’, you may be in the clear after five years.

But what happens when the illness is within us? And will last a lifetime? Our very own immune system misreading their specific directions, wearing down, and ultimately attacking us?

Welcome to the wonderful world with MS, where not only do you lose friends, perhaps your job, or your partner, but also your own body has decided to attack you?

It’s a lot to deal with, and it’s personal.

So, perhaps you can deal with being sacked for having MS, however unfair it is. You can mourn the loss of a partner who couldn’t face an unpredictable future. You can talk sensitively with your son, explaining everything in gentle terms.

I won’t die, like your grandfather. I had great treatment. I’m trucking on (my alternative to the hideous ‘fighting’) with MS. I’m still working, I’m still here. I’m even still studying. It’s all fine.

Yet that kernal of auto-immune is always present. How best to prevent or delay this? Massive doses of Vitamin D? Munch on almonds every day? Yoghurt?

A restrictive diet, full of courgettes and not much else? Pasting a smile on every single day, and blessing it for allowing me another day where I can carry on with life, however limited?

Or. The alternative. Questioning everything and accepting nothing. Pushing myself to the absolute limit, to prove a point.

When this illness is within us, where do we go to escape?

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Teendults – A Survival Guide

The Teenager is home for over three months now Uni has finished for the Summer break.

He sent me an extensive shopping list in advance – ‘lots of protein, fruit, veg, rice, protein bars, frozen fruit, milk, eggs, bit more protein’.

Just to be on the safe side, I added extra loo roll (he’s the Houdini of Andrex), more toothbrushes (he chews them), gallons of shower gel (he swims in the stuff) and some more protein.

If I’d thought about it, I should have sent a list back, something like this:

  • Take your key when you go out.
  • Change the loo roll when it’s empty (handy hint, there’s more next to the loo).
  • Take your key when you go out.
  • Turn the oven off after cooking your usual six salmon steaks.
  • Take your key when you go out.

And that’s pretty much it. The key issue is a biggie; he’s lost more keys than I can count, forgets to take it or just seems surprised to find it in his pocket after hammering on the door at 1am.

On one memorable occasion, I woke up to find his bed empty and my front garden littered with plastic bottles and newspapers. He’d forgotten his key and in his endearing wisdom, decided to chuck the contents of our recycling bag at my bedroom window in the hope of waking me up.

I eventually tracked him down to a friend’s sofa and had a little chat about the aerodynamics and weight of newspapers.

And so it was I took my friend for the journey and we picked up The Teenager plus all his worldly possessions and trekked back home. The cat rolled her eyes and scarpered, used to a more sedate pace of life in his absence.

It’s strange welcoming back an adult, after dropping off a boy at Uni last Autumn. We’re both adults now, yet somehow there’s the maternal temptation to revert to type.

I remind him to take his coat when it’s chilly. He reminds me he’s an adult. I press an apple into his hand before he goes out. He places it back in the fruit bowl. He’s not the only one rolling his eyes. And so it goes back and forth.

I think though, that we’re getting there. I’m getting used to him singing in the shower again; some days Beatles hits, others Oasis. The thumping as he gets dressed (no idea). The evidence of overnight fridge-foraging when I come downstairs in the morning (follow the crumbs to the empty packets).

Some things never change though. One evening last week, I resisted the temptation to ask if he had everything before he went out – key, wallet, fully-charged phone (hah!). I waved him off, feeling quite pleased with myself, and settled down to some serious Danish drama on telly.

A minute later, a knock on the door. The Teenager, looking sheepish.

‘Forgot my key’.

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