Tag Archives: blog

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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MS Is Truly, Horribly Awful. And Then Some.

disgraceIt must be that time of year, but the trolls are back out.

The usual complaints – I make light of MS, I haven’t suffered enough to understand, I am a disgrace. And so on.

So rather than replying to each individual email, here goes:

How dare I complain about MS when I am taking a Master’s degree? – If only you knew how much of a challenge this is. I have no career left; that’s in tatters. My inner compromise was to take on a job to pay the bills but which left me with a void once I got home. So I decided to try my hand at writing. It’s not going terribly well. A victory for the haters?

How lucky am I to have had Alemtuzumab treatment, so how come I complain about MS?  – Yes, I am hugely fortunate and there is not a day that goes by that I don’t think about this. And you know what hurts? I took this treatment first and foremost to be there for my son – as a single, divorced parent with 99.9% of responsibility for my son’s upbringing, I had to be there for him. My dad died of his MS symptoms when he was 35. I don’t really remember him. And every single day, I am grateful that my son will never face that.

I haven’t suffered enough to understand MS – there’s a reason I don’t blog from my sofa, when I can’t get up and my son cries. If that’s not suffering, I don’t know what is. And haven’t I ‘suffered’ enough, growing up without my dad?

I make light of MS – yes, I do. Sometimes. Read more of my blog – it varies, depending upon what is happening in my life. Some blogs are heartfelt, some are light-hearted. That’s real life, in all it’s glory.

I am a disgrace to MS – I might be, it’s a personal decision how you read my blog. If you want to see how a very normal, boring, fat(ish) woman responds to a huge change in life, read on. A disgrace? If disgrace means campaigning, then yes I do. If disgrace means being a boring fat(ish) woman with MS who just so happens to blog about it, then yes, count me in. MS is not my entire life, it is part of it.

I’m not disabled, so what do I know? – so I only walk with a stick when times are rough? I only fall down the stairs now and again? Or trip over and bang my head once or twice a month? Oh, ok.

I don’t know what I’m talking about – Yes, I do. I know way more than you when it comes to my own MS. MS is unique to every person. So why is mine less valid than yours?

If my detractors would like me to suffer more, be in more pain, have more injuries and give up work, then yes, I am an absolute disgrace to MS.

But, if there is something wrong with that last sentence, then I am, in my own little way, coping with MS.

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Handbags and Gladrags …

fatWow. Blimey.

My blog has been short-listed for an MS Society Award,

Three things go through my mind when I got the magical email:

  • Wow. Blimey.
  • Gah. Double gah. What. On. Earth. To. Wear. To. The. Ceremony?
  • What will The Teenager wear? Now he is very, very tall and has worked out a lot?

I must clarify, I’m not precious: most days, I hang out in baggy builders’ trousers, with seventeen pockets full of screws and a pad and pen in my hand. Just in case. I wear a bobble hat (dust always falls from the ceilings). In short, I am the furthest from glam than you could possibly imagine.

A day off for me is baggy jeans and a baggy top. And flat boots. Air-dried hair, slumped shoulders.

I literally (and, as an aspiring novelist, I don’t use this word lightly), cannot imagine me in a dress. Or a skirt. Or a skort. Or culottes. Which leaves trousers. Capri, full-length, baggy, tight.

Perhaps I should do a Jenny Beavan?

Anyway, that to one side, this is a great opportunity to turn it back to you guys.

Almost four years ago, out of sheer despair, I started my little blog with the encouragement of M. J. Hyland, a wonderful novelist; I had contacted her after reading an article she wrote for The Observer about her MS.

We emailed for a while and she suggested I blogged. The rest, as they say, is history. Almost four years later, my little blog has over 4,000 hits a month and is read in over 100 countries.

For a teeny-tiny MS blog, I’m chuffed. I write the blog I wanted to read – life is more than MS; it’s all about friends, family, work, studying, falling over, picking yourself up and … MS.

So, tonight, me and The Teenager are celebrating. He’s had a Domino’s pizza (treat night, once a week, to make up for having a ‘ripped and toned’ gym routine the other six nights).

As for me. I’m just taking it in.

One last thing – without your support, your comments, your ideas and encouragement, I know that I would not be here today. I would still be having that first Pity Party for One I mentioned way back in 2012. And where would I be then?

How times have changed.

Thank you for travelling this road with me.

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Are We Our Own Worst Enemies?

Yesterday’s blog brought some thought-provoking comments, two in particular from Steve, who linked to a great blog post he wrote (read it here), and I spent most of the day mulling them over. Are MSers guilty of naval-gazing and deconstructing every single little symptom and therefore preventing ourselves from being understood by other people?

And I’ll start with the term ‘MSer’. There has been a huge amount of debate in the MS forums and on Twitter about whether it is ‘acceptable’ to call ourselves MSers. I mean, really. If we are pitting ourselves against each other in this matter, what hope is there for us? I use the term a lot. I think it is snappy, short and easy for social media. Whether or not you choose to ‘define’ yourself as an MSer is up to you, but don’t berate those who do.

I may refer to myself an MSer, but I certainly don’t live my life solely as a person with MS. It just happens to be part of my life, the same as being a mother, a daughter, a sister, a colleague, etc. Once you are diagnosed with MS, ok, you join a whole load of other people with MS, but they are all different, just as daughters, mothers and sisters are – they generally only have that one thing in common.

And yes, MSers can be incredibly guilty of dissecting and discussing each tiny symptom, blowing things out of proportion. Wait – before I get hate mail – I have been there (still am sometimes). I hold my hand up. Pre-diagnosis, I was a frequent visitor on MS forums. I was scared, bewildered, anxious and lacking in information, and often the forums made me more worried,  not less.

I started this blog to show the funny, embarrassing and downright socially awkward side of MS, precisely because I was so fed up reading blogs and forums that were simply a litany of endless complaints. Who wants to read about that?  If we want sympathy and understanding from other people, constant moaning is not the way to go about it. I know some of my posts are downbeat, but I hope the majority can raise a smile and an  ‘oh, that happens to me too!’

We need to amaze people – ‘THIS is what MS looks like’ – ‘Hey, I’m still living, working, laughing, getting drunk, being happy’. Reach down to those going through the diagnostic process, befriend them and inspire them. Maybe then we can stop this cycle of despair.

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To Blog or Not To Blog…

Why not write a diary? Why not chat to friends? Why blog?

I have thought a lot about this since I started my blog last September. Why am I exposing my innermost thoughts to the world? Hmm. Long story short – when I was going through the MS diagnosis period, I read everything possible about MS. I read the factual sites, I read the blogs, I read the chat rooms.

All of them offered me great support, with a special mention to the MS Society forums. Yet, I still felt there was something missing. Where was the humour? I went through hell during my diagnosis. I got drunk, fell over, bored my friends to death.  But I came out the other side, stronger and ready to take on the world.

I wanted to show people that yes, MS is crap. It can ruin your life. Dreams are destroyed and your life plan is altered forever. MS shatters families. But when the worst has happened, surely the only way is up?

I think I have incorporated MS into my life. I hope so. And it’s pretty grim a lot of the time, but other times it makes me laugh out loud. I am used to the dodgy walking, the foot drop, the random jerking and general oddness. The fatigue is just part of my life now. I do as much as I can, when I can.

To begin with, I kept my blog a secret from my friends and family. I wasn’t ashamed, I just felt exposed. But now, even though I know there are people reading my blog who I would prefer not to, I just think, ‘and?’.

This is life with MS. It ain’t always pretty, but it’s the truth. The comments I have received keep me going. So often, I have thought, I can’t blog any more. Then I get a lovely comment and it makes it all worthwhile. So, I’m going to keep blogging, keep telling the crazy truth about life with MS. And all feedback is always gratefully received…


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