Monthly Archives: July 2013

It’s Sunny, So What?

ice creamThe weather forecaster on telly, wearing a short-sleeved shirt and stupid grin, could barely contain his excitement. ‘You’ll be pleased to hear this lovely sunshine will be continuing right into next week, folks, so get those barbecues fired up!’

I chucked another toffee wrapper at the screen and shifted the bag of frozen peas perched precariously on my head.

Then the forecaster turned on his sad face and sighed, ‘but it’s not all fun in the sun (dramatic pause), children, elderly people and those with chronic illnesses, take extra care!’ It feels strange to be in that category now, a bit like when you move up a section on the ‘tick your age bracket’ question on forms.

The country’s gone mad. I pass the time of day peering through my window, counting all the men who really should know better than to parade their naked, tattooed bellies to an unsuspecting public. Newspapers eagerly tell us we’re hotter than Spain, France, Morocco. Shops have been stripped bare of ice lollies, burger buns and cider. £5 paddling pools are changing hands for £50 on Ebay.

Which is all well and good, but we just don’t do hot weather in this country. Same as we don’t do snow. Our European cousins would frown upon our fondness for frolicking around in garish ‘summer clothes’, gnarled feet shoved into plastic flip-flops, downing lager like there’s no tomorrow. They’re the ones who coolly sip an espresso in a shady cafe, clad in perfectly coordinated outfits, chic neck-scarf tied in the way only Europeans can manage.

Frankly, us Brits embarrass ourselves. So, I am going to turn MS heat intolerance to my advantage. I will cultivate a Euro-chic demeanor. I will re-name my afternoon MS fatigue sleep a siesta. I will stay out of the midday sun and embrace my Celtic paleness. If I venture out at night for a drink , I will walk primly past the sunburned  sun-worshipers. I won’t be hosting a barbecue, but will instead sit in an dark, arty bar talking about arty things and existentialism.

So all you MS peeps with heat intolerance, join me in my one-woman mission. If I can just get that knot right on my neck-scarf, I’ll be right with you.

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Scaredy Cat

scaredy catA couple of days after my last A level, I boarded a train with £90 in my pocket and a one-way ticket to Vienna. With my Doc Martin boots and schoolgirl German, I was ready to take on the world.

Four years later, I went home, courage (or naivety) having taken me to several continents and back, with enough adventures to last a lifetime.

These days, I look back at that time with wonder. Who was that person and where is she now? The other day, someone said to me, ‘Oh, you’re so brave, the way you cope with MS.’ Am I?

Thinking about it, no, I’m not brave at all. I’m scared beyond belief. And what’s this ‘brave’ thing all about anyway? Why do people think it’s a compliment to tell someone with a life-long illness they’re brave?

What’s the alternative? One thing I do know, my courage has deserted me. I’m not brave. I’m just making the most of a terrible situation. MS has split my courage right down the middle. Yes, I stood up to bullying at work. Yes, I fought my way through the NHS. On the other hand though, MS symptoms have stripped me of my day to day courage.

I drive as little as possible. I walk as little as possible. I don’t go out in the sun. I sleep rather than socialise. Everything is planned right down to the last detail. In short, I am boring. Did I really drink Champagne on a train station roof in Poland for my 20th birthday? Did I really move to New York on a whim? What happened?

After I mentioned this to my mum, she kindly said, ‘you haven’t lost your courage, it’s just been re-directed.’ In a way, she is right. MS was a curve-ball that dismantled life as I knew it. Courage didn’t come in sweeping gestures, it came bit by bit as I slowly put my life back together. Tenacity drove me forward and got me through the long, lonely nights when I wept into my wine glass.

I’m working on changing from being boring back into a semblance of my former self. So if you see someone drinking Champagne on the roof of Cardiff Central in August, holding an ‘I’m 40!’ balloon, that’ll be me.

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Just Do It Yourself

Just Do It YourselfA brilliant idea came to me during this heatwave. Why not order everything I need online? No more trailing round the shops in the boiling sun rocking the drunken lobster look.

I ordered food from Ocado, printer ink from Amazon and school shirts from M&S. Getting carried away with my success, I looked for paint on the B&Q website. The Teenager wants to paint over his old Manchester City blue walls into a more mature light grey (or ‘light rain’ on the paint chart). Not a problem.

I ordered the three tubs of paint and threw in some ceiling paint for good measure. Got to the online checkout. Home delivery not available, just reservation in store. Ok. My nearest store is a ten minute drive away. With air-con on full blast, I could manage it. So I happily put in all my details, printed off the confirmation email and planned to pick it up the next day.

The morning after, someone called to say that my paint wasn’t in stock. Fine. Could you you let me know when it will be in stock please? No. You have to fill in the entire online page again. Which I did. And printed off the confirmation email and planned to pick it up the next day.

The morning after, someone called to say that my paint wasn’t in stock. Groundhog Day? Can you let me know when it will be in stock? No. You have to fill in the entire online page again. I counted to ten, said thank you very much (I’m British), and put the phone down.

Fired up with indignation, I got in the car and drove to the store. Bypassing the cruising pensioners in bright t-shirts, clutching pots of lavender, I stalked the paint aisles. And there, right where I expected them to be, were my two tubs of paint. And the ceiling paint.

Shoving them in my wheely-basket, I stomped up to the checkout, trying to find someone I could complain to. No one in sight, so I scanned through my items, put them back in the wheely-basket to take to the car. As I was leaving, there were three members of staff chatting to pensioners in bright t-shirts, clutching pots of lavender.

The website name for B&Q? www.diy.com. Does exactly what it says on the tin.

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Guilty As Charged

gulty as chargedSomething lovely happened yesterday that also broke my heart into tiny pieces.

The Teenager had arranged to go out biking with his friends in the morning. That was great – he’s an outdoorsy kid and I’d much rather he was out than stuck in his bedroom in front of the computer screen. He phoned me early afternoon to tell me excitedly he’d been invited to the beach by some of his friends and their parents.

When I got home, he was in the middle of packing his swimming costume, a towel and some money, bouncing around, beaming from ear to ear. I waved him off, sat at the kitchen table and cried.

Why? MS. Extreme heat intolerance means I will never be able to take him to the beach in the summer. I can’t take him anywhere in this weather. Add constant fatigue on top and I’m a pretty useless parent now. I’m only glad we did a lot together when he was younger, before MS reared it’s ugly head.

I’m trying to stay positive. The flipside to my new working hours is that I am always at home after school. He might only want to say a few words/grunts before raiding the fridge, but I listen. I know all the dramas going on at school, I know what homework he needs to hand in and he knows I’m always there for him.

Finding a new way of parenting with MS has been one of the hardest challenges and one we are still working out together. Gone are the days we jumped in the car on a whim and headed off. Everything is meticulously planned now, with one eye on the weather forecast and energy levels.

Years ago I was told that when you give birth to a child, you also give birth to a lifetime of guilt. What you feed your child, which toys you buy, which school you send them to – all are guilt-laden. Throw in a hefty dose of MS and the guilt skyrockets. I’m failing as an active parent. I can only hope that when he looks back as an adult, my son will not remember the times I didn’t take him to the beach, but will instead feel secure in the knowledge that he was always, always the centre of my world.

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MS Society To The Rescue…

downloadMy last post about how hard it is to describe MS to other people struck a chord with lots of you and a huge thanks to everyone who retweeted it and posted it on Facebook.

Well, those lovely peeps at the MS Society have just given their introductory guide to MS a makeover. The guide – What is MS? – is for anyone interested in the condition and can be useful to give to your friends, family and colleagues. (click here to have a look at it)

It’s still going to be hard to describe what MS is like, but this is a great starting point. This compact edition has only seven sections, compared to 14 in the last one:

  • What is MS?
  • What causes MS?
  • What are the symptoms of MS?
  • How is MS diagnosed?
  • Are there different types of MS?
  • Can MS be treated?
  • How can the MS Society help?

Feedback on the previous edition now means that the booklet is A5 rather than A4, has a photographic cover to make it more visually appealing and the amount of text has been reduced. There’s also lots more graphics so the information is easier to read and take in.

This new guide is a lot more upbeat and fresh (even The Teenager gave it a thumbs up). Have a read, download it and hand out to everyone you know. The MS Society is always on the ball with information and leaflets covering every aspect of life with MS. I’ve got a whole bunch of them at home that I picked up at last year’s MS Life in Manchester. So spread the word – knowledge is power.

p.s. MS Life 2014 will be 26th – 27th April. Click HERE for more details.

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