Category Archives: Emotions

Out Of Date(s)?

cheeseI discovered an old block of Parmesan in my fridge the other day.

It was well past it’s sell-by date and had been sadly neglected and forgotten about, but I sliced the edges off, grated it and it was just fine. Perfect.

As I was sprinkling it over my pasta, I realised, I am this Parmesan.

Before you think I truly am suffering from an extreme case of Empty Nest Syndrome now The Teenager is at University and my only companion at home is my cat (and my plants), bear with …

Back in 2012, soon after my diagnosis of MS, I lost:

  • My partner (he scarpered, sharpish)
  • My job (bullied, then forced out)
  • My health (left the building)
  • My envisaged future (dashed)
  • Hope (lol)

Now in 2017, I have:

  • A brilliant job
  • Despite MS, decent health and access to treatment
  • A brighter future (I think)
  • A whole lot of hope

Excellent. But this is where the Parmesan comes in. I am still partner-less; I am that forgotten-about block of cheese in the back of the fridge. Whilst the milk and sweet chilli sauce may have regular outings, I never go anywhere.

And, sticking with my very dodgy analogy, with a bit of sprucing up, maybe I should rediscover myself and find the True Me lurking just beneath the surface. Sure, I may be a bit battered and bruised from experiences over the last five years, but with a bit of help, who knows?

Part of me hasn’t looked for a partner, focusing instead on the more pressing matters of giving The Teenager as normal a life as possible, winning a workplace discrimination case and sorting out MS treatment. It didn’t leave much room for anyone else. Plus, I was in the middle of an MS Pity-Party For One, which wasn’t pretty.

Well, now The Teenager is having a ball at Uni (latest text, ‘Being an adult is weird, but am getting used to it‘), my job is sorted and I’m facing the future filled with hope, a teeny-tiny bit of space is being carved out.

Then the Fear Factor kicks in. I simply can’t date because:

  • The cat wouldn’t like it
  • I don’t own any ‘dating clothes’ and I can’t wear heels
  • Ditto dresses. Outside of my job (building-site clothes), I wear jeans
  • When do you bring up MS?
  • The last time I dated, the iPod hadn’t been invented
  • I could suddenly get foot-drop and splatter myself across the floor

So you can see the dilemma I’m in. It would be kind of nice to have a partner-in-crime; someone who didn’t mind the jeans, the cat … the MS. Then again, it would be nice to wear heels again, but that isn’t going to happen any time soon.

I often wonder if I am subconsciously preparing myself for eternal singledom. I cut out holiday adverts from companies with names like, ‘Only The One’ and ‘Just You’ (no single supplement, no pressure). I am taking an unhealthy interest in talking to my plants. I automatically divide recipe ingredients by four.

As we approach the season of unbridled smugness, i.e. Christmas With a Loved One, spare a thought for little old me, pruning my Poinsettia and signing Christmas cards from me and – you guessed it – the cat.

Sad, much?

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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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If I Had My Choice, I Would Fire The Scriptwriter

shockedI was is in work the other day and in amongst a conversation about the previous night’s ‘Game of Thrones’ and the price of jacket potatoes, the attention suddenly switched to me.

‘Oi! What’s up with your face? You having a heart attack or something?’ (builder humour).

It was a hot day. My face was burning and bright red, so I yet again explained MS heat intolerance, one of my first and most annoying symptoms, trying to put a jokey slant to it.

‘Oh yeah, that old MS excuse again. Don’t you ever not talk about MS?’ Now, this may seem brutal, but bear in mind this is a building site, they’re all friends and I can give as good as I get. So I did, and cut him down to size.

A while later, more unsettled than I wanted to let on, I casually asked if it’s true, do I always talk about MS?

‘Um, kind of.’

I found a shady corner, sat and sulked for a long time (admittedly, not very grown up) and brooded. It was bugging me. I always prided myself on putting MS to one side and getting on with the job. Apart from when I can’t, and I stay at home, the beauty of a flexible job. I thought I had a ‘work mask’. I’d calibrated my working day so that I started early, finished early and spent the rest of the day recovering before starting again. To most people, I should appear perfectly fine. 

Finally, it was time to go and I continued sulking in the van. Then I thought about it on a different level. They were perhaps right, but it just showed how much MS dominated my life. I try to keep it in a box, or at least a separate part of myself. I’ve tried to come to terms with the totality of it, but maybe it hadn’t really sunk in.

I ran through work scenarios:

  • Unable to work in the sun – MS heat intolerance.
  • Being tired all the time – MS fatigue.
  • Tripping over at work – MS foot drop.
  • Garbled speech – a hark-back to one of my first symptoms.
  • Brain freeze – MS cog fog.

Yep, it was all about MS. To me though, it’s all normal now. So it’s not so much that I talk about MS all the time, it’s when people ask me why I did this or did that, the answer almost always wends its way back to MS.

Maybe they could focus instead on how much I have moved the company forward, which has nothing to do with MS; my superb organisational skills, my rapport with clients, my eye for detail and my all-round fabulousness?

What do you think?

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A Shadow Of My Former Self

mirrorI had an illuminating conversation with a fellow person with MS today and it made me think.

We were talking about what our ‘other’ selves would be doing at this point, without MS in our lives.

Number one on my list is the death of courage.

I was in a beautiful hotel in mid-Wales for a meeting but getting there had been a carefully-crafted expedition. On my own. For someone who has had The Boss pick me up every day for work since January with a cup of coffee and a chocolate croissant,  this was, well, big. Huge.

I drove there for a meeting all on my own, with only my nagging sat-nav and a can of Red Bull for company. I was utterly petrified. To put this in perspective, I used to think nothing of finishing work in Austria and driving to Prague for dinner.

As I wended my way around the winding roads, I reflected upon my Other Life. I would have gone to work, no need for day off to prepare. I’d hop in the car with tousled wet hair fresh from a shower, perhaps wearing a jaunty striped t-shirt with a scarf knotted just so. I would toss a few essentials in a canvas bag and leave.

In my other life, the one that I forked away from back in 2011, I would be a fully-qualified social worker. I would be helping people. I would also have matching cushions and dinner parties with interesting people, where I would serve kitchen suppers involving pomegranate seeds and an Indonesian paste.

My shadow self stalks me. Yet, isn’t that the same for everyone, MS or not? Don’t we all wonder what we could/should/would have done; it’s merely that MS throws this in to sharp relief?

Maybe I should concentrate on that other fork in the road, the one that led me here? Ok, so I may not have matching cushions and a satisfying career, but would I have grown as a person? Probably not.

Without MS, I would not have that job where I could be here every single day that The Teenager got back from school. I would not have been witness to the tiniest moments that are the biggest in a Teenager’s life.

Without MS, I would not have pursued a childhood dream of writing. It seemed silly, something unimportant and indulgent. MS forced my hand.

Without MS, I would not have experienced the fragility of life until I was a lot older, and perhaps it would have been too late? And the regrets would have been more powerful?

Me and my alternate shadow co-exist. We have to. As someone once said to me:

The darker the shadow, the stronger the light shining nearby.

Just The One Candle, Ta …

ancientYep, it’s that time of the year again when I’m staring down a Saga Holiday (see the world! make new friends! we have doctors and defibrillators on board!).

Obviously, I’m not quite there yet, but it’s getting ever closer.

However, the issue of my age was put into startling perspective when The Teenager, whilst hanging off the fridge one day, asked me how old I was when I had him.

’26’.

‘Wow! Like, that’s …  like, wow … old, yeah?’.

‘Well, ok, but if you’d behaved yourself and arrived on time, I would have been 25, so ner’.

He was due the day after my birthday but hung around for another week, dozing off every time the midwife wanted a poke around.

‘Hmm, he’s big, isn’t he? You look a little uncomfortable?’

‘Yeah’.

Almost 18 years later, The Teenager was aghast. ‘So, in, like 26 years time, you’ll be, like, 70? If we count your next birthday, which is like, a couple of weeks away? Or 69 if we don’t. To be fair. But, like, wow‘.

When you’re pregnant, they tell you kids will keep you young.

They were wrong.

As The Teenager loves music, I have to play along to ‘Guess The Year’. I’m always a decade or so out. Same for films. And major news stories. Is this what happens in your 40’s?

It’s strange because I seem to exist in a time warp. The Teenager plays almost exactly the same music I did at his age – Oasis, The Verve, The Beatles. He watches the same films. He wears the same clothes as my old boyfriends. And me, apart from the mirrored skirts and stripy tights with Doc Martins.

In fairness, I will grow old disgracefully and fully intend to embrace my hastening years and wear lots of black flowing garments accessorised with large beads and silver bracelets. I envisage giving readings of my eighth bestselling book to hoards of said Teenagers who will be rapt as they listen to me espouse words of wisdom.

In real life? I will no doubt reach 69/70 in the blink of an eye, much like my first 26 years, so I will do my utmost to cram every experience possible into such a slim window.

MS-willing …

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