Tag Archives: blogging

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.

Bxxx

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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Emotions….

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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Confused Dot Com

to blog or not to blogHmm. Excuse my random ramblings in this post – my last blog post threw up some extremely thought-provoking comments and I’m still working my way through them.

A couple of people were concerned that I’m blogging/thinking/worrying about MS too much perhaps and I completely understand what they mean, as I blog every two days.

Has MS dominated my life to detrimental levels? I’ve also always posted about things unconnected to MS, such as my adventures with make-up, The Teenager, my rantings against the Daily Mail, politicians, lifestyle gurus, etc.

Funnily enough, before the comments, I was wondering how I should move my blog on slightly, especially after the second lot of Campath treatment I had in July. Or is it naturally evolving anyway?

Initially, I started the blog for two reasons. First, to make sense of everything and second, to show that there is light at the end of the tunnel. It’s not all bad and some of it can be downright hysterical. Worst case scenario, if my blog bombed, at least I would have a nifty diary to show The Teenager when he was older.

So, where do I go from here? How much is MS a part of my life? Honestly, blogging has been the best form of therapy ever, and it’s thanks to comments from you guys that I can be prodded in the right direction. Blogging is public and I’ve always published every comment, no matter how much they might make me go ‘Ouch, that hurt.’ Otherwise, why blog? Why put yourself up for public scrutiny? Why not just scribble in a diary?

My MS journey has been weird and wonderful. If nothing else, I hope that people can see that it is possible to fight back against discrimination in work, that it is possible to be a single parent with MS and it is possible to get back up after being knocked down. I’m still confused. I love writing. I adore the discipline of searching for the right word, the best way to convey complicated feelings. I’m not yet sure how to change the direction of my blog.

Finally, now I have had Campath and haven’t had a relapse since last year, am I still ‘qualified’ enough to talk about MS? All I know is, blogging kept me sane through dark times. And without you guys, this wouldn’t have happened.

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