Tag Archives: The Teenager

Mar 05 2019
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Emotions

How I Live Now

My seventh official MS-versary is looming.

The Teenager’s 20th Birthday isn’t far behind.

We got this far, and I still can’t quite believe it. Who would have thought that broken, miserable, pity-party-for-one person would morph into, well, me? Us?

We did it. All I wanted was to see my son safely into the next stage of the life of his choosing, not one imposed on him by this illness. .

He won’t have to tell people he never knew his mother, can’t remember her apart from a few vague snapshots; as I did with my dad who died long before the incredible MS treatment options we now have today.

Yes, we still went through hell. Mortality and High School don’t tend to go together, especially when you’re the single, main parent. Corners were cut, but the absolute commitment to him remained. I did my absolute best and he has, after a few shaky starts, turned out to be a young man I am incredibly proud of.

Of course, like me, he got angry. Angry that I was sacked, angry that I couldn’t find a new job after I ticked that disability box, angry that society turned its back on me . And most of all, angry that this illness had interrupted his childhood.

We had our battles, as we got used to our new roles. His once energised parent was now useless and tired, so, so tired, but he was never my carer. I hope I was always emotionally present for him even when my body didn’t follow the protocol.

I planned my Lemtrada infusions around his brief holidays with his father, trying my hardest to appear rested and healthy when he returned home two days after I was discharged.

Now he is at University, he is forging his own path. You could say my job is done, I got what I wished for all those years ago, and it is. The relief is immense, although I know his years in High School were not without MS dramas.

My son is not my confidant, I have friends for that. He is not my carer, I would employ one if I needed that. He is a young man making his own way in the world.

Some people say I’m just lucky that I was able to access brilliant treatment and I completely agree with them. I took the riskier, quicker option that I was fortunate enough to access and why wouldn’t I? Who else would pick my son up from rugby training twice a week? I accepted the side-effects (Graves, yep, am fat), but I would do it all again in a heartbeat.

I’m glad my son will not be taken to see my body when he is four years old, and forever wonder what he would say to me, should he have the chance. I’m glad my son grew up with me at his side, no matter what my disabilities. And I’m glad my son has grown up to be such a compassionate advocate for disability rights.

Above all, I am glad that he had you guys at his side – you’ve watched him grow up, you’ve given advice and you’ve comforted him and I cannot thank you all enough.

So, I may struggle every single day, but I will still struggle every single day and I will still struggle to continue doing so, no matter what comes my way.

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Jan 22 2019
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Emotions

Hello World

I don’t get out much.

Truth be told, I don’t get out much at all.

So, to be part of a regenerated writing group has been brilliant and so far, I’ve managed three monthly meetings out of three. Yay!

Fair play, it takes a lot of planning. I worked all weekend and took the day of the meeting off. I’ve been whacked over the head by my old nemesis MS fatigue recently, so I woke up, watched the news and fell asleep. Twice.

Wading through treacle is an understatement. There are simply no words to describe the skull-crushing, soul-sapping fatigue of MS and it doesn’t seem to get any easier.

Is it the invisibility? The difficulty in explaining? Or just that awful, horrendous feeling that most people with MS will be familiar with? The one that makes you want to cry with frustration. Who knew tiredness could actually be a painful ache?

So it’s all the more important that I get out into the world, tempting though it is to stay hunkered down in my sofa. Living on my own, perhaps even more so.

And here’s the truth:

MS is bad enough. But living with MS and Complex PTSD is a double whammy, something I had to admit to in my PIP form. Many of us do, and it’s something I’ve touched lightly upon in my past blogs.

Weirdly though, knowing what I’m up against has made me stronger and more willing to fight, after wondering why I feel so bad when I should be feeling better. I have a wonderful life, for which I am eternally grateful. The Teenager is thriving, despite the terrible knock-backs he’s had to cope with, and that to me is more important than anything.

I only have to look around our cosy little cottage to smile; The Teenager’s bedroom ready for whenever he wants to crash here, the cat ready to greet him, the continuity of it all is a wonderful thing.

MS has made me face up to challenges and Complex PTSD is one of them. It can happen to any of us, at any time, but if the effects are suppressed, the fallout can be huge. Add MS into the equation, and it’s asking for trouble.

I’ve messed up, trusted the wrong people with the right information. I’ve made a fool of myself and have paid the price.

True friends are hard to come by. The ones who ask how they can help are the ones I cherish the most.

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Jan 09 2019
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Emotions

Growing Old Disgracefully

I met with my fabulous MS nurse last week for my six month review.

I recounted my most recent symptoms (I keep a log book, MS brain).

After I’d read out the last one, we both looked at each other and said, ‘Hmm, age, or MS?’

It’s true – it’s becoming far trickier to work out which is which. Balance, fatigue, brain, all of it. I mean, I’m not ancient (cough, 45), but life does have a funny way of creeping up on you when you least expect it.

At Christmas, The Teenager mentioned he’d be twenty years old in August and it took me aback. Seriously? I quickly worked out the dates, and he was right of course. I just never figured my son would be … 20. Just as I never expected to say I had been diagnosed with MS for seven years. A bit surreal.

Not only that, as we’ve debated, what on earth will I call him? The Twenty-ger?

In some ways, I now think I’m ‘settling’ in to MS. It is what it is, if this it what it is. And whether it’s age or various busted neuro-pathways, it’s all the same – some sort of loss.

What I should be concentrating on is what I can do, not what I struggle with. So, I’m trying to come up with a list of things that encompass a more positive approach:

  • I’ve had an epic cold since November that only now shows vague signs of finally leaving. Rather than lament my neglected writing, I’ve been reading books to prove I’m still, just, studying.
  • Downside to that is I’m totally mired in Victorian times, but it’s quite comforting, all the carriages and fainting spells, horrid asylum episodes to one side.
  • I’ve sorted through my wardrobe, passing on clothes, buying some others in the Christmas sales.
  • I’ve dusted off the Nutri-Blast.
  • I’ve analysed the two new wrinkles that appeared overnight on the 2nd of January, initially dismissing them as ‘pillow-face’ creases. Nope, they’re here to stay Two days of anguish followed by, oh well.
  • Should I get a shopping trolley?
  • I’m four and three-quarters years away from a Saga holiday.
  • My lovely friend, who is 57, has found love on a dating site. Hope?
  • Our house is incredibly sorted, as I look for any excuse rather than study. Even my cutlery drawer is gleaming.
  • The little cutting I took all the way in the car from Geneva in March is thriving.

So all in all, a good result for January. The Teenager (I can still call him that for a while) is gaining confidence after a blip, I’m getting better, the cat is recovering from The Teenager’s procession of friends over Christmas and all is well.

What could possibly go wrong?

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Dec 23 2018
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Emotions

Christmas, Present

I’ve finally finished work for the Christmas break.

Me and The Teenager have our schedules worked out.

His consists of an ironic Christmas jumper, pints with the lads and a catch up with old school friends.

Mine is a stack of books to read, chatting to the cat and not moving far from the sofa.

The Teenager asked me once why we don’t have a Christmas, ‘like you see on the telly, you know, the long wooden table , thousands of people around it all smiling, with snow falling outside the window.’

I’m sure, somewhere, those kind of Christmases exist, but for most of us, we muddle through and make the best of things.

It’s the one day of the year we know exactly where we were and what we were doing in years/decades gone by, which can certainly add a bitter-sweet twist to the day.

On the plus side, we celebrate the achievements of our children (The Teenager survived a nasty attack, he’s studying hard and appears to have an astonishing amount of emotional intelligence) and on the downside we remember family members who were so vibrant last year and who are now struggling.

And of course, the family and friends who are no longer with us. It’s hard to juggle all the emotions and still stay, well, present.

It’s been a tough year for me, in so many ways; fights with the Department of Work and Pensions, fights with Student Finance Wales. Dredging up thousands of words about how my life is difficult now I have MS (surprise!).

I’m a tough cookie, until I’m not, and this year has pushed me to the absolute limit. I’ve won battles and lost others. I’ve struggled to explain just how awful things have been. I’ve wished that people could ask how they might help rather than judging, however well intentioned.

Mental health is much more in the open arena now and I’m thankful for that. However, sometimes I feel I have more support during a physical relapse than an emotional crisis.

This Christmas, I would like to think that we could reach out to our friends and family, ask if they need support, and give it. It often doesn’t take much – a kindly word, a quiet conversation, the feeling that you can be in someone’s corner.

My Christmas, this year, is tinged with sadness; I’ve had to give up two activities which kept me grounded and in touch with the wider world.

However, Me and The Teenager are both looking forward to a brighter 2019, and for good reason. Opportunities are opening up for us and hopefully, with some support, we can catch hold of them and turn them in to reality.

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Dec 09 2018
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Daily Life

So This Is Christmas …

We are recovering – The Teenager from being attacked, my much lesser incident of a twisted ankle.

Damned foot-drop.

I remember lying at the back of the works van, having fallen and thumped to the ground, thinking, ‘this is just not happening’. But it did.

Do you remember those falls you had as a kid? That sickening thud of the pavement rushing to meet your head? That’s what foot-drop is like. Of course, it’s ‘curable’, if you concentrate on every single step you take and will your feet to rise to the occasion.

But who has time for that? So I fall. I trip. I can trip over dust, cables, pavements.

And it brings me up short, and maybe not in the way you might think.

Our dad died forty years ago this year from complications arising from his MS; I am one of four siblings he left behind.

When he died in 1978, nothing was available to alleviate his condition; he was sent home after brutal tests, with only a walking stick and a diagnosis of ‘crippling paralysis’, now known as Primary Progressive MS.

After eight years, he died at the age of 35, a husk of the brilliant man and scholar he once was.

I am lucky. I was born into an age of MRI’s, MS nurses, disease-modifying therapies, which is why I didn’t hesitate to accept the one that would allow me to be well enough to be around long enough to see The Teenager in to University.

So when I come up against seemingly impossible situations, such as The Teenager calling me in work saying, ‘Don’t worry, but …’, I am perhaps more sanguine than most parents.

He is alive, well, and healthy. It is him who called me, not a consultant, a police officer or an anonymous University staff member. I was only grateful that I could speak directly to him, despite his trauma.

Christmas is always a tough time for families. The Teenager will be home in a week, and the washing machine will be pushed to its limit. The cat will be giddy with delight and I will be over the moon to have him back in our little cottage.

However, gratitude is the most important emotion; gratitude that I can greet him at the door, welcome him in and be the same person (plus limp) he last saw at University. His bed is ready with fresh linen, the fridge will be stocked and we’ll have a great catch up.

It’s precious. I’ll never lose sight of what we could have lost.

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