Tag Archives: diagnosis

Aug 22 2018
4 Comments
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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May 23 2018
6 Comments
Emotions

The Best Worst Day of My Life

Six years ago on Friday 25th May, it’ll be my six year MS-versary.

Six!

It feels like yesterday. I vividly remember parking up a whole hour early, my car facing the huge hospital before me.

For some bizarre reason, I tried out a new lip-gloss as I waited, a freebie from a magazine I was probably too old for, my nerves shredded.

After an hour, I locked the car and made my way to the clinic where I flicked through a battered Argos catalogue. I was called through and in less than ten minutes I was diagnosed with a highly-active form of MS and offered two different treatments.

I left, dazed, spaced-out, stumbling, a sign of things to come. I stuffed the leaflets into my bag, sat in the car and exhaled, catching sight of that awful lip-gloss in the mirror. It truly was dreadful,  but at that point, I could’ve painted a clown face on and not worried about it.

No one wants to be diagnosed with MS, but after 10 months of endless relapses, I just needed an answer, and with that, access to vital treatment. In the interim, I was spinning around in a frightening world of anxiety and fear. My health was declining rapidly, I was confused and I was losing control of my life; partner left, sacked from work. Cat stuck by me.

In the car, I smiled. I would be treated. The medicine, no matter how brutal (and it was pretty harsh), would slow this all down. Give me some breathing space, allow me the energy to get The Teenager through High School, that he’d just started. The timing wasn’t great.

Six years on and three courses of Alemtuzumab treatment later – one more course than the usual two, thanks to a particularly active bunch of lesions – we’re still here and still doing well (or ‘calm‘, as The Teenager would say).

He’s wrapping up his first year at University and I’m doing … ok. Ish. It’s been an unimaginably steep learning curve, adapting to a life I’d imagined would be a couple of decades in the future. Slowing down, readjusting.

I sleep a lot and have the whole routine down to a tee – blanket, earplugs, zonk. I’m gone. I can quite literally say, I could sleep anywhere, anytime. And that’s before 8 hours at night.

I trip a lot. I fall over a lot. My hands are wonky and my feet don’t listen to me. And as for the nerve pain; that’s a whole different matter.

Six years on, I’m in a perpetual cycle of adapting, albeit on a downward path. Yet the more I go downwards, the more my mind struggles to stay afloat.

I push myself, then have a little nap.

I could count out my post-MS life in naps. But I would far rather count it out in successes. We’re still here, and we’re here for the long-term.

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Aug 29 2017
10 Comments
Emotions

Denying the Anger of Bargaining with Depression and Acceptance?

griefI don’t know about you, but the so-called ‘5 stages of grief’ annoy me.

It’s too neat, too … sanitised and packaged.

MS is anything but.

So, you get your diagnosis (of this life-altering, incurable illness) and then you seamlessly glide from the Neurology Consultant’s office onto this Grief (for your old, pre-MS life) Conveyor Belt, at the end of which you happily reach Acceptance and proceed to remain a valuable member of society? And you have the leaflets to prove it.

Yeah, ok.

This concept was devised by Elisabeth Kubler-Ross in 1969, primarily in dealing with terminally ill people, but has since permeated everything from illness to divorce to coping with not having your smartphone to hand for 24 hours while it’s being repaired.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

In the right hands, it can be a useful tool, especially if you make clear that we can go through the stages in any direction, not necessarily in this order and we can boomerang between all of them for years. In the wrong hands, it can be yet another pressure to conform to what is deemed ‘normal’. You’ve got MS? Go through this and you’ll accept it. You’ve not accepted it? What’s wrong with you?

In my own case, I never once denied I could have MS. In fact, with a family history of it, it was my first thought when my body failed spectacularly, despite the initial diagnosis of a stroke. Anger? Self-pity, yes. In buckets. I’d like to add this to the ‘stages’.

Bargaining? Never entered my mind. I’m confused to what it actually means. If I do this, I get that result?

Depression is almost a given for any life-changing illness, so I think that goes without saying.

Acceptance? It comes and goes, probably in tandem for each relapse. Just as I think I’ve adjusted to MS, it throws a curveball.

There is no magical formula to coming to terms with MS. I wish there was. Just as MS is unique to us all, so are the ways we cope with it. So, resist that conveyor belt and be true to yourself. If you want to scream and shout, shut yourself away for days eating nothing but ice cream or you fancy painting the town red, do it.

Should you ever reach Acceptance? Have I ever climbed Everest?

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May 23 2016
12 Comments
Emotions

Happy 28th Birthday To Me!

birthdayI was diagnosed with MS four years ago this week.

If you’re anything like me, and each MS-diagnosed year feels like a dog year, then that makes 28 years I’ve had to get used to this.

And, whoah, do I feel every single one of those years.

Four years? Is that all?

But, as with any birthday, there is a lot to celebrate. Challenges? I’ve had a few. I’m still here. Bad times? Many, and I’m still here. Horrendous, vile, despicable times? Too many to mention but they are behind me now. This week is about having a look over how far I’ve come, not just about the hurdles I had to clamber over to get here.

The Teenager is thriving; he’s just finished his last exam, has actually hoovered his entire bedroom and emptied his bin and even decided to start cooking for us both a couple of nights a week, in preparation for university life. First up? Beans on toast. Yum. It’s the thought that counts.

Don’t tell the boss, but I love my job. The alternating work sites so I’m never bored, the camaraderie, the fresh air. I adore it. I can pick and choose my hours so medical appointments are never a problem. There’s no tutting or eye-rolling when I take a bit of time out to shake off the Uthoff’s or get to grips with foot drop.

I’ve just entered the dissertation stage of my master’s degree. It’s flown by and here I am. Completely unprepared and uncoached in academia-speak, but I will try my hardest. And when I hand over my hard-backed version to my tutor in twenty years, I will be beaming from ear to ear.

And last but not least, I have been through a major life-upheaval with my mum being ill. I found strength I never knew I had and thanks to my fabulous friends and family, I have navigated the ups and downs that a serious illness brings, only this time I am at the other side of it.

The downsides? I’m still working on my spontaneity – I can’t wait to say, ‘yeah, great, it’s 7pm, it’s a beautiful evening, of course I’ll join you’, or, ‘ok, macrame wasn’t quite what I had in mind for an exciting hobby, but, sure, I’ll give it a go.’

Or the usual gremlins – appearing drunk, tripping/falling over, wonky speech, dodgy hands, etc.

Yet for all that, I can’t quite believe how far I’ve come since the Bad Old Days of Deep Sorrow and Wailing. I think I am a kinder, more compassionate person and I appreciate every single positive thing in my life beyond measure.

MS might have laid down a challenge, but I challenged it right back.

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Jan 19 2015
10 Comments
Emotions

My Own Kilimanjaro

KilimanjaroI’ve been a wee bit down recently – thinking about all those peeps with MS I read about who’ve done remarkably astounding things, such as climb Kilimanjaro or walk the Great Wall of China.

Or abseil, sky-dive, bungee-jump, fire-walk.

All this adrenalin was making me feel somewhat inadequate. I want to do these things, I guess I’m just a coward.

But over lunch in work today (blueberries, strawberries, chicken and egg muffins – s’Paleo), I realised something. Apart from the fact that the boss was chomping loudly on a Gregg’s pasty right next to me, followed by a chocolate sponge cake and clearly enjoying every minute of it.

We all have a personal Kilimanjaro. MS shoves us out our comfort zone and all of us, I bet, have done things we never thought we’d do before diagnosis. Not just the big, spectacular things, but the small things that ultimately add up to life-changing experiences.

In my case, I learned to relax about housework. I began to take each day as it comes (not as easy as it sounds). I started to truly see life for how wonderful it is, despite everything. It’s as close to a near-death experience as I’m going to get (for the second time – long story).

With MS (and any other serious illness) , I think we get the chance to rewrite our life-plan, some parts of our own choosing, some we are compelled to take on board. We are forced to adapt to limitations and prejudice, yet we are also presented with the opportunity to try things we’ve always wanted to do but never taken further than idle daydreams. What do we have to lose when we’ve lost so much already? We can only gain by not just allowing MS to shove us out our comfort zone, but by taking ourselves out of it too.

My bigger Kilimanjaro is writing. I’ve written all my life and promised myself that one day, some day, at a vague, distant point in the future, I would do something about it. Perhaps. Well, thanks to an overflow of MS emotions, helped along by a huge dollop of anger at being bullied at work for having the cheek to have MS, I started my blog. And a couple of years later I thought, hey, maybe I can write? So I started an MA in Creative Writing. And then I thought, maybe I could turn my blog into a book. So I am.

If MS is in your life, pinpoint your own personal Kilimanjaro. It probably won’t be too far from something you always wanted to do …

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