Tag Archives: The Teenager

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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How Little Is Too Much?

This blog will be six years old in October. Six!

When I first started firing out my random thoughts to the blogosphere, I knew I’d be buried in amongst the millions of other blogs out there.

I just wanted to write, get all the confusing thoughts down, in the small hope that someone, somewhere would understand.

I blogged anonymously, as I was experiencing horrendous workplace bullying due to my MS and had a feeling it would end up as a legal matter, which it did, after I was fired suddenly.

I took comfort in the cloak of anonymity, writing painfully honest posts about anything and everything as me and The Teenager adjusted to a whole new reality. And the reward was an incredible amount of support that flowed back to us. We chewed over problems, discussed different options through comments feedback and Twitter.

In short, my blog became a vital lifeline.

You guys saw me through Alemtuzumab treatment, three times. The subsequent thyroid problems. The weight gain. Adjusting to a more limited but still fun way of living. You generously shared your own experiences and advice about symptoms, getting through my studies, cheering me on all the way.

You also watched The Teenager grow up, which is particularly special to me – as someone once told me, ‘it takes a village to raise a child’, and despite being alone, your input saw both of us through some pretty turbulent times. Regular readers might still remember his School Uniform Protest.

Even though he’s now at University, he still asks me to post this photo or that comment on Twitter – he’s got a following all of his own and I know it means a lot to him.

The blog is now read in over 150 countries, the latest being Rwanda last week (hi!). I’m absolutely delighted. And when people buy my book and tell me it’s helped them through hard times, I grin for days. So many of you have emailed me directly and become firm friends.

Closer to home, and perhaps inevitably, now I blog under my real name, my rambling thoughts are now read by people I know. Which puts a whole different slant on things. It’s the same as leaving an open diary on the table.

Although my recent posts are still personal and open, I’m aware that I hold something back each time. I go so far, then stop. I’ve been mulling this over and over in my mind and am still unsure what to do.

Should I just not worry, go for it, life is short and ultimately, what the hell? Can you be held to account for what you feel? Or should I still temper what I write, creating more even-handed posts?

As always, I’d love your advice …

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Always On Call …

The Teenager has always been fiercely independent – give him a phone charger and he’ll travel anywhere, talk to anyone and generally find his own way back home.

He’s settled into University life as if born to it and has found his feet exceptionally quickly.

So I’m always a little thrown by random texts I get from him, at the oddest times.

Take Friday for example. I’d mentioned to him I’d be at an MS Council meeting 60 miles away and staying overnight. There’s a get-together in the hotel in the evening to meet other people affected by MS in the surrounding area and it’s great to see new faces.

I’d settled down on a squishy sofa and was having a brilliant discussion with two lovely people, and , well, whaddaya know – up pops a text at 7.30 – ‘Should I get bleach to clean my toilet?

Umm. Ok. I replied, he indeed should and use it a couple of times a week. I then rejoined the conversation and picked up the thread.

Another text pinged – ‘How do you do it?’

I texted back about squirting it under the rim and making sure he had a loo brush. He did, so that’s good. I should know, I bought it for him along with a million other items on his IKEA Student Survival Shopping List, an event I’m still recovering from.

And that was that. Until the next time.

What the toilet bleach conversation showed me is that you just never, ever, ever stop being an always-available parent. Which is kind of lovely. It’s nice to help fill in the gaps he’s finding as he learns what it is to be an adult, bleach and all.

I like the fact he knows he’ll get a quick answer from me, even if it’s an ‘I don’t know’, as in one of his other texts recently, ‘Have you heard of the band Royal Blood?’ Nope. Or when he just wants to say something, such as, ‘I made chicken katsu curry. From scratch.’ Proud.

When it comes to priorities in my life, he will always come first, no matter what MS throws at me. He knows that even if I’m sprawled on the sofa, virtually unable to move for fatigue, I will make sure my phone is by my side.

Looking back, I can’t say he had it easy with MS. It hit just as he entered high school and we went through some pretty dark times, but we did it. First and foremost, MS was my battle, and I wanted to protect him from the worst of it, as is right. His childhood and growing up feeling secure and loved were top of the list.

So, I love his random texts, his song suggestions, his little remarks about how his latest essay is going. I’m involved in his life, but not overly so and that’s the way it should be.

P.S. Has anyone heard of Royal Blood?

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