Without You, None of This Would Be Possible

totesAt last, the editing is over and I’m almost ready to publish my book – a collection of blog posts from the past two years in one handy format.

I’ve learned a lot from this process:

  • I mention chocolate way more than I thought.
  • My spelling and grammar have been appalling at times.
  • I still say ‘totes amazeballs’.
  • My kettle-bell is still my doorstop.
  • The Teenager still refuses to have an up-to-date photograph taken, meh.

Apart from that, it’s been an emotional time – reading and sifting through everything I’ve written, deciding what to keep and what to leave out (my cat’s not that interesting). I’ve cringed, but I think (hope) it’s the honesty that keeps it real.

However, one thing is more important than anything – a blog is only as good as the readers, you guys. You have been incredible. You’ve lifted me up through my darkest moments and laughed along with me through the good times. You helped me through my blip when I (briefly) stopped blogging. Your comments have been inspiring and thought-provoking. In short, without you, none of this would be possible.

So a totes huge thank you to everyone who  has supported me and my blog.


p.s. anyone know how I can lose two stone before publication?

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Second Generation MS

life goes onMy dad had MS.

When he died, aged 35, it wasn’t from MS (which he had, PPMS), it was from TB. His immune system was shot.

From what I’ve been told, he was a go-getting, cheeky, funny  bloke with his whole life ahead of him.

Until, in the 1970′s, MS struck. Or, ‘creeping paralysis’, as it was known back then.

He was tossed in ice-cold baths to test his temperature tolerance. He was given a wooden stick and sent home.

He died and times changed.

Fast forward to 2011 and I now faced a future with MS.

We have a myriad of DMD’s. Support from MS nurses. We are lucky.

I remember, when we had to write about our parents in primary school, I would write, My Dad Is Dead and MS Killed Him’.
For that, I was called up to the teacher’s desk each year, to explain my single-parenthood.

I spoke to my mum before I wrote this. I was worried that by referring to my dad in my book, I was being mawkish or overly-sentimental.

She disagreed.

So. I have MS. I wish my dad had lived long enough to see me now, and everything all of us who live with MS today are achieving.

The One About the Courgettes

courgettesI am a walking, stumbling slapstick comedy.

I’m desperately trying to see the funny side but yesterday took the biscuit (or courgette, now I’ve gone over to the Paleo side).

The shelves in my kitchen are groaning under the weight of vegetables so yesterday I decided to tidy them into neat heaps, reds/purples to one side and greens on the other with mushrooms and onions somewhere in between.

I found myself with a courgette in each hand and paused momentarily to give them a gentle squeeze – ‘cook tonight? Can I bear another courgette spiralized into tasty noodles?’

Having made my decision, ‘nah, not tonight’, I turned to pop them on the green pile. However, my left leg decided to stay where it was (such is the contrary, tantrum-y behaviour of MS), next to a curtain hanging over the back door to keep out the Welsh damp and random mice entrails dumped by the cat – a rather fetching print of bookshelves. Anyway, the last thought that went through my mind was, ‘must save the courgettes’.

I twisted, pesky leg still refusing to behave, caught my other leg in the curtain, spun in a circle and landed face down on my kitchen floor, courgettes held aloft. I lay there, gazing at the ceiling before hurling the courgettes against the fridge, where they bounced off and landed on the kitchen table, knocking my coffee over and scattering post-it notes.

Courgettes are dangerous.

It wasn’t the best MS day yesterday – a lot of my symptoms are ramping up and it’s getting harder to keep them under control. After the Courgette Incident, I had to go to the surgery for my monthly Alemtuzumab blood test. Perhaps sensing I had a day off work, my feet decided to do a little American line dance rather than behave. I jigged into the surgery, danced in front of the electronic booking-in computer, took a seat and watched as my feet twitched and jerked. Fun.

It was also, of course, my first day back in Uni after the Christmas break. We were a packed class, rapt as we listened to the history of the Flâneur (basically a nosy people-watcher from the last century who then writes about it). Trying to look semi-intelligent, I rested my face on my hand, elbow on the desk. Out of nowhere, my fingers started to twitch so badly it looked like I was sending dodgy signals to the tutor.

I sat on them. Wish I’d done the same to the courgettes.

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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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Paleo for Schmucks

paleopicThis Paleo malarky is taxing my brain.

I’ve read everything I can get my hands on, I’ve raided the local fruit and veg shop and The Teenager can’t find his yoghurts in the fridge without foraging through bags of curly kale and spinach.

I’ve scoured Gumtree and am now the proud owner of a juicer (ok, not strictly Paleo, but I’m easing myself in gently). I have also bought a spiralizer gadget thing which I tried out yesterday; after grating my fingers over and over I finally figured out how to make carrot ‘spaghetti’, yum.

I made a packed lunch for work today, eschewing my usual carb-laden fare and pulled out my brand new salad box (with detachable dressing pot) and started munching away on my carrots before moving on to four chicken drumsticks. I also turned down a pastry and snacked on nuts instead. Unheard of.

So far, so good. I’m feeling virtuous and renewed, and it’s only Day Two. I’ve read that Paleo can be excellent for MS although some of the internet posts verge on the fanatical and are a little worrying. According to some of them, by not doing Paleo before, I’ve been compromising my health and making my MS worse. I even – if you can actually believe this – read that the Paleo lifestyle, i.e. living clutter-free and calmly, can cure MS. Oh, really?

I like the idea of Paleo, eating a more natural diet, cutting out the wheat, etc. It’s basic and it makes sense. And that’s where it stops for me. None of this forum nonsense with people posting questions such as, ‘I weakened and had a Dairylea Triangle and now I’m devastated, how can I overcome my feelings of shame?’. Or, ‘can I feed my cat a Paleo diet?’

For now, I’m going to stick to the 80/20 rule, i.e. for newbies like me, Paleo 80% of the time and treats the rest, even a Dairylea Triangle if I fancy it. Or some chocolate cake. Sigh. Will I stick to it? I reckon so, as long as I relax about it. Since my thyroid’s been playing up I’ve had the unparalleled joy of losing two stone rapidly then piling most of it on again. I spent a couple of weeks in my skinny jeans and loved it, but it was the wrong way to lose weight.

This time, I’m going to do it properly. And reward myself along the way …

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