Category Archives: Emotions

May 27 2015
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Emotions

The Un-Signposted Road

signIn the three years and two days since I was diagnosed with MS, I’ve been waiting for A Sign.

Something huge, massive, with the words ‘Congratulations! You’ve made it through! Life Can Now Return to Normal!’

I thought, ok, if I go through the five seven twelve stages of grief and adapting to MS, I would pop out the other end ready to pick up the threads of my old life. I would brush myself down and carry on regardless.

Only three problems with that: my old life no longer exists, MS is a bit bigger than I gave it credit for and there won’t be a sign.  I’ve come to realise that there simply isn’t an end point, it’s a continuous process, so I might as well just get on with it (note to self). Quite possibly I’m stating the obvious and am a bit late to the game.

Looking back, I think I was a little guileless about the whole thing. I used to think A Sign could be:

  • When I would no longer spend an evening bemoaning my fate and crying into my wine, Morrissey playing on a loop in the background.
  • When I didn’t reach for the MS Nurse Relapse Hotline every time a tiny new symptom appeared.
  • Ditto, I wouldn’t endlessly google every tiny new symptom which would bring up a list with not just MS but every other horrifying illness on the planet and subsequently I would go to bed crying (see first point).
  • When I wouldn’t quake with fear when meeting with my neurologist as I would be semi-fluent in long MS medical words.

Nope. Well, of course they all count towards some kind of acceptance of my weird and wonderful new life with MS, but it’s not the whole picture. MS has a funny way of tripping me up, literally.

Take the other day. I woke up, put the kitten out, put the kettle on and fell against the cooker. Gah. Later that day, I stumbled and whacked my arm badly. I had stranger than normal tingling in my left leg. My hand hovered over the MS Nurse Relapse Hotline leaflet. But, no, I put some Morrissey on, poured a glass of wine and settled down in front of Google instead.

I have therefore decided to count my blessings and enjoy my new life. The Teenager is thriving, my studies are going well, I love my job and, despite the occasional set-back, life is looking not-too-bad. Although I do wonder if my neurologist will have some pesky new MS words to slip into conversation the next time I see him, the meanie.

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May 15 2015
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Emotions

When MS Is Your ‘Significant Other’

datingBefore work one day this week, me and The Builder were busy slurping our McDonald’s coffees, nattering away.

We usually talk about screws, fixings, grout and such like. As you do.

But today, he was telling me all about his neighbour and his have-to-be-seen-to-be-believed dating adventures.

Apparently this neighbour has six women chasing him and has recently been proposed to. Gah.

I have no men chasing me and am sadly lacking in the Sorrento Engagement Experience.

This got me thinking.

Quite soon after MS popped up, my partner scarpered. And I’m quite glad, in hindsight.

But now, three years down the line, where does that leave me?

I was recently contacted by a TV  company. They were lovely; they enjoyed my book, liked what I was doing to raise awareness about MS and asked if I would like to take part in a dating show.

Well, my heart leapt. At last! I could find a croissant-eating academic with an interest in knitting. I was sold.

Until.

The email.

Thank you for expressing an interest in ‘Too Ugly For Love’.

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May 09 2015
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Emotions

The Darker The Shadow, The Stronger The Light …

limboI’ve had the most incredible week.

Believe it or not, my podgy-moon-face has been in three different films, all raising awareness about MS in different ways.

First up, a video at my local teaching hospital to show trainee doctors a real-life MS scenario. Let’s just say, I hope I haven’t put them off neurology, gah.

Second, a film for The Newly-Diagnosed. Hopefully I came across as reassuring and positive about MS. A tricky place to be as we all have to go some sort of mourning period? I know I did and it lasted well over two years.

Third, me and The Teenager went to London yesterday. I was taking part in a film for World MS Day, about coming to terms with an MS diagnosis and all it entails.

It’s all been busy and illuminating. We went down the day before so we could be calm and collected before Filming. Plus The Teenager has GCSE exams looming next week, so he packed  a bag full of notes and a lot of anxiety. Mind you, all notes went out the window when he spied the massive telly on the wall in our hotel room, conveniently placed in front of his bed. And the chocolate vending machines in the foyer.

Anyway, I met some phenomenal people, all living well with MS. Despite MS? And that’s the thing. We’re all so different. We all have wildly varying MS stories, but we’ve all forged an ultimately positive path.

I’ll be honest, I often feel isolated. I’m a divorced, single parent with MS (get the violins out, meh). Yet there is a wonderful network of people who will draw you towards them, putting an arm around you and tell you, ‘no, you are not alone.’

MS casts a very dark shadows on our lives – on our relationships, our family, our work, our … very being. Who are we now? Now we have MS?

Well, the good news is, if you are in the shadows, there are so many people out there holding out a friendly hand. No one has to go through MS alone.

I remember, back in the Bad Old Days, when fatigue and relapses pinned me to my sofa. I sent out a tweet, ‘I need support’. Well. The support came flooding back. I was never again alone.

And that’s the thing. For all of us who have been through the darkest days, can we light the way for the peeps who are going through the same thing?

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Feb 15 2015
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Emotions

It’s Not Right, Until It’s Alright

beginIf there’s one thing I’ve discovered from combing through my blog ready for publication, it’s that when you have a diagnosis of MS, you’ve got to cut yourself some slack.

If you’re unlucky enough to spend time in that awful waiting room, otherwise known as ‘Limboland’ (as I did) , you will understand this even more.

MS makes everything wrong – it messes up your life; your plans, your dreams, your work, your family. Yourself.

It’s just not right. It’s not fair.

I cried this out, over and over, when MS first appeared in my life, and for a long time after. How (insert swear word(s))?!?! How unjust. How dare MS intrude into my life in this way?

As people with lives, jobs, family, we desperately want to make everything … right again. Back on track.

And that is what coming to terms with MS is all about.

It’s not right. MS is indiscriminate. Thrown into chaos, we have to begin to make sense of our lives, from top to bottom.

There’s no easy way to do this. In my case, I had to grieve; everything I would never achieve, everything I was now not eligible for (medical insurance, life insurance, etc). My future with The Teenager. Not going to the beach on a beautiful day thanks to heat intolerance. Losing my job purely based on my diagnosis.

But grieving is ‘good’. Ok, it’s awful, but it also throws up our regrets. What could you miss? What can you do now? It can’t all be bad?

I’m not saying MS is good. It’s far, far from it. But if we have to embrace our unwelcome intruder, surely we should make it work for us?

With MS, our lives go wrong. Very, very wrong. But it won’t be right until it’s alright – we have to come to terms with it at some point. Why not sooner rather than later?

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Jan 19 2015
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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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