Tag Archives: blogging

We Are Five

candlesMy little blog turned five last month.

Five years old!

The Teenager had just celebrated his 13th birthday, I was a lot skinnier and life was pretty horrendous.

Full of frustration and anger at the constant bullying I was experiencing in work since my MS diagnosis a couple of months earlier, I needed an outlet.

I had been chatting through email with a wonderful author, M. J. Hyland (her books are brilliant – I totally recommend ‘How The Light Gets In‘), who herself has MS, and she encouraged me to start a blog. And so, I did.

Five years later, The Teenager is throwing himself into University life, I am mourning a wardrobe full of clothes I don’t fit (thanks to Grave’s disease) and life is pretty wonderful.

Looking back over the last five years, it’s been a twisty-turny path. For at least two years, I was in a dark place; coming to terms with such a diagnosis was complicated enough, but coping with vicious bullying in work and an extreme course of MS treatment at the same time almost pushed me over the edge.

And then I was sacked from my job for ‘being a liability’ due to MS and with the ensuing legal battle  life wasn’t fun for me, or, more importantly, for The Teenager. Something had to change, and luckily it did: this blog.

It’s no exaggeration to say that it pulled me out through the murky swamp I had found myself in. After a shaky, tentative start, I began to receive comments on my posts. There were other people out there, just like me! You guys. I talked about everything. And you sent me your own experiences and your wisdom. We mulled over problems, worked things out and I had the benefit of many different viewpoints, not just my own.

Life now is a world away from five years ago. The Teenager is a happy, confidant, go-getting young man and I could not be prouder of him. He tackled all the challenges he faced head on. I’ve completed a Master’s and gained a Distinction. I enjoy my new job and it’s flexible, working around the MS quirks.

I often wonder where I would be today, had I not had this diagnosis. Quite possibly, unfulfilled, still dreaming about writing, still wondering when my real life would start.

Now I know there will be no knight in shining armour, I have gained an inner strength. Now I know that life can be utterly random, I go with the flow.

But above all, now I know there are people like you out there who take the time to send comments, opening my eyes and expanding my vision of the world, I know me and The Teenager will be ok.

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A Considered Response …

terrifyingI’ve been so fortunate to receive glowing reviews of my book on Amazon and Good Reads, and I treasure every single one (often reading them when I’m having a low day).

However, I had one the other day which made me stop and think.

The essence was, ‘loved the start but at the end … so much of it rambles on and is not really in the realm of most MS’ers, eg. taking on an MA’.

Do I ramble? Yes, most definitely. I even have a category on my blog labelled, ‘My Ramblings’.

It was more the second part which stuck in my head. Let me explain:

Due to MS, I have had to give up my entire career path. It just won’t happen, especially after being sacked for having MS. I was derailed. Luckily I was offered a job by my best friend, which, although fulfilling and excellent at fitting around the myriad of appointments I suddenly have, has no real career path. I will no doubt end my working days with this company.

I needed something else; something mind-expanding and difficult. As I struggled tremendously to complete my degree just when MS struck, I thought, ‘OK MS, you almost won, but get this, I’m going to try something even more challenging.’

I hit on the idea of a Creative Writing MA. Could I write anything else apart from my blog? Believe me, it’s looking like I can’t. But at least I tried.

I’m not that different from MSers who run marathons, who raise money for MS charities or hold cake bakes. Or the MSers who progress through their career path, defying their detractors. My way of pushing back the frontiers and limitations of MS is to indulge myself in something I never thought I would be able to do.

Don’t get me wrong, it’s been hell. I’ve cried, almost withdrew from my course several times, torn up endless manuscripts and sniffled in class when my short story was brutally dissected.

Perhaps an MA is ‘outside the realm of most MS’ers’. Just as jumping out a plane is for me. Or winning a gold medal in Rio.

My MA is precious to me – it shows me I still can. 

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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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You Don’t Know What You’ve Got ‘Til It’s Gone….

teddy bearA lot of you know I gave up blogging a while back.

And yet here I am again.

I gave up for a lot of reasons – lack of time, a need to move away from multiple sclerosis for a bit, family stuff.

But you’ve also probably noticed I just can’t keep away.

It really hit home to me with my last blog post just how much I respect and value your opinions, comments and experiences. I had a terrible week – that awful, all-enveloping depression landing on me out of nowhere. I didn’t know where it came from and I didn’t know how to get out of it.

Just as abruptly, it lifted. But what got me through the last few days of it was your support.

Without sounding too much like a schmaltzy Hallmark card with a teddy bear on it, I really missed you guys!! You talk a lot of sense – a lot more than I do.

I’m going to think of this stage of my blog as Part Two (or Deux when I’m feeling pretentious). You all came with me on my journey through MS, the discrimination, the struggles with studying, finding a new job, coming to terms with every aspect of MS. And not forgetting The Teenager and his Dramas, i.e. run out of yoghurt or crisps.

So, yes, Part Two. What’s next? I still have down days, but they’re more and more outweighed by the good. Life has settled down. I have the best job, working with my best friend. I’m starting my MA in creative writing in September when hopefully I’ll be able to call myself a proper writer, jotting down wandering thoughts about clouds, the meaning of life, etc…

The Teenager is (at the moment) behaving himself and at least giving a good impression of studying for his GCSE’s. I still have to fumble my way through clouds of Lynx and pick my way over dropped clothes on his bedroom floor. Newsflash – he opened his window AND curtains yesterday. I think the fresh air made him slightly giddy, as he printed off a revision timetable.

Anyway, I can’t say how often I’ll blog but judging by how much I have missed your words of wisdom, I’m here to stay for the foreseeable future. Hope you’ll take me back….

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Craig's pictureCraig is my guest blogger today. He’s just started his own blog, so check it out at www.jonnyspandex.blogspot.co.uk.

Hi, my name’s Craig. I’m 27 and from Leicester, UK, and I’ve got MS (shock!).

Sorry if I’m sat funny, I’ve just injected copaxone in my stomach.

So, after my request for a guest blog was accepted, while I made a tea for the missus and installed MS (see what I did there?) Word, I got to thinking about what I wanted to say, the ideas just started rolling! But I had to pick one, which is like when you have to pick one thing out of several you like and want. So I’ll start like this:

Emotions. Emotions are like MS. We know what they do, and how they work (how symptoms occur in MS, not the disease itself). The issue with both is that we don’t know how to stop them. My daughter is deaf, has been from the day she was born, but it was caught fast and she got hearing aids. At 4, it started deteriorating. I knew it was coming, but the night her deaf teacher rang and told me, I cried my eyes out. I knew exactly why I was and the reason scares me. I’d lost control of the situation, we’d countered on her hearing loss with the aids but it wasn’t going to be enough as it got worse and I was powerless to stop it. Quick end to the story, she’s now got cochlear implants and is fine! 🙂

Right now I’m doing things to hopefully help with MS; I’m in control (aka remission!). But with my first relapse, it hit home at the seriousness of what I’d got, that night I lost control. I’ve still got a lingering side effect, but it’s part of me. More recently, I’m looking at situations in life more and more and imagine what it’d be like. I could actually cry at soppy films sometimes, not because Di Caprio dies at the end (hat that film!)  but because I’m relating to stories so much more. A PPMS sufferer I speak to on Twitter (sorry, Steve, it’s you!) was having an especially bad day and what I read on it made me so angry, that I/he/anyone can do nothing for it. It made me feel so many emotions but again, no on has control over it, all you can do is sit back and watch the proverbial hit the fan.

Forget all that anyway, the footy’s back!

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