Tag Archives: diagnosis

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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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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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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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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What? So What? Now What?

brain tabsOver the last few weeks, I’ve been speaking with someone who’s recently had an MS diagnosis.

With their permission, and anonymity, here’s what we talked about:

To begin with, I answered their questions about the practicalities of MS – the drugs, the DVLA, etc.

All well and good but it was clear that this person was struggling and trying to put a brave face on it. Like many of us, they had never faced such a seismic shift in their health and the impact it could have on everything in their life.

We talked some more, but it felt a bit ‘woolly’. Unusually, I had a minor brainwave, and thought about my current reflective essay for Uni. How could we harness this and develop a new plan, a reconsidered way of living, alongside reflecting upon and coming to terms with the diagnosis?

The reflective model I use is deceptively simple – What? So What? Now What?

What?what’s happened? How did you get to this point and what has happened along the way?

So What?what will happen as a consequence? What will change/stay the same? Which areas have been impacted the most?

Now What?what can we do next? How can we adjust and adapt to what’s happened? What will the future look like?

As a (very) brief example to ensure anonymity, here’s mine:

What?rapidly-evolving MS, constant relapses, diagnosis and swift decision needed regarding treatment. Partner leaves, the meanie. 

So What?bullied at work due to diagnosis, sacked, legal case, drastic change in health, need to find new job. Abandoned by some friends.

Now What? make sure The Teenager is ok. Work out what I really want to do, i.e. write. Learn WordPress and start blog. Find new job which will fit in to new lifestyle.

The beauty of this is that it allows you to empty everything onto a large sheet of paper, with just a few coloured Sharpies. The ability to pour out everything, all those niggles that float around at night and all those fears is truly cathartic. I wish I had done it back then; life may have been a lot simpler.

And, why stop there? It’s a great way of keeping up to date with yourself. Say, if you do this every year or so and keep your old reflections, it’s a fantastic way to see how far you’ve come. When I wrote my current one out last week, it seemed quite remarkable how much my life had changed, the majority of it for the better. Try it, you may just be surprised…

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