Category Archives: My Ramblings

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 On Board

seatI was living in London when I was pregnant with The Baby and took the bus to work every day.

I was fine standing when the bus was crammed, but as my bump grew larger, and then even larger, I still wasn’t offered a seat.

Unlike today, where it could reasonably be assumed that I’m ‘just fat’, back then I was skinny with a, well, huge bump in front of me. Still no offers, despite my sad eyes and forlorn glances at people comfortably sitting down.

So perhaps I am a little sceptical about Transport for London’s new scheme, to aid travellers like me, with hidden health conditions – read the story here. It’s a bit like a blue badge for the Tube.

First, how are you supposed to flag up the fact you’re wearing a little badge on a busy, packed tube on a Monday morning when commuters are doing their London-best to ignore everyone else? Thrust yourself in people’s faces? Sidle up to a nice-looking person and eyeball your badge, hoping they’ll notice? (note to self – this could prove to be a most excellent dating tip – I could make a badge proclaiming, ‘I’ve got MS – Date Me!’).

Second, could I really imagine myself wearing one? I’m British! Will it mark me out as somehow different? Well, yes.

Third, we’re all sceptical people; blue badges for cars are notoriously misused and I doubt these badges will be any different. Plus, as with car badges, there will be the eternal refrain, ‘but you don’t look ill’. Even though it’s all about hidden disabilities, I fear the wider public still has a long way to go before accepting this notion.

And when do you fish out your badge and pin it on? With my dodgy MS hands it could take a while. Do you then unpin it on leaving the Tube station?

Believe me, I love the sentiment and I admire Transport for London tremendously for trialling this.

However, by marking us out as different, I fear we could lurch in to uncharted territory – must we broadcast to an entire Tube carriage that we have a hidden disability? I would far rather ask someone sitting near the exit if I could possibly have their seat and quietly explain why. In my experience with MS, people are really rather nice and understanding.

Except taxi drivers in Carmarthen …

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Safe Haven or Prison?

homeI had a very interesting chat about the early stages of my MS the other day.

One thing that cropped up again and again was how isolated I felt.

The foot-drop, the stumbling, the jaw-dropping fatigue – they all conspired to keep me at home.

I no longer socialised, preferring to invite my few remaining friends over to mine instead, where I could lounge on the sofa, safe in the knowledge that they wouldn’t judge me or the amount of tears I cried. Or how much cake I scoffed.

I went out far less and began to place internet shopping orders for everything – groceries, books, a radio, even a packet of batteries. My lovely squishy sofa became a hateful place where I spent hour after hour sleeping my life away.

My window was a torture instrument, displaying an endless reel of everything I was missing out on. My kitchen morphed into an obstacle course, showing off the ingredients that lay rotting in the fridge and languishing in the cupboards. Meals were ready-made and unsatisfying.

In short, my home became a prison, and the more I was isolated, the more I became isolated. It seemed a vicious circle and one I couldn’t find an escape from. I realised I was in serious danger of living my life from my sofa, comfort-eating, feeling sorry for myself and developing a serious lounge-wear habit.

I don’t often talk to myself, preferring to offload to the cat instead, but this time I gave myself a shaking down. This had to stop. I used to love my house – it was a place where I was bringing up The Teenager. I had stamped our style all over it; it was fun, bright, comfortable and, well, home.

Over the next couple of months, I ventured a little further out. Ok, I got tired, I tripped up. I dropped a whole cup of coffee over myself. I started to think, who cares? And why do I care so much? It wasn’t easy. It was painful and embarrassing, but the alternative, that looming prison-home was far worse.

Nowadays, I have accepted that life will never be like before. Spontaneity has gone, never to be seen again. The rules have changed and I have to change with them or be left behind. I’ve worked out my high-energy points and low-energy points and put them to good use. I accept there will be down times, when I have to rest or pay the consequences. I make the most of the up times.

My house has returned to it’s former state – it is a place I feel safe and comfortable in. I love it. I love my squishy sofa. I love my kitchen – it plays host to fresh ingredients and a sprinkling of ready-meals and they happily co-exist. I have a stack of books ready for when all I can do is slump on the sofa, as elegantly as possible.

And now, when I’m having a really bad MS week, I’m tussling with my house again. I have a pile of uni books to read and I could do with wrapping myself in clingfilm and lying down somewhere quiet in a bid to lose weight.

My house could be a prison, or it could be a safe haven I can return to …

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Divided We Fall?

worldI have a serious question.

There’s a lot of us across the world living with MS – some new to it, some ‘old hands’.

Do the people who have been living with MS for a good few years feel somehow separate from all those newly-diagnosed people?

It’s a personal question for me; regular readers of my blog will know that my dad died of MS complications when he was 35: he had Primary Progressive MS.

With that in mind, I didn’t hesitate to have Alemtuzumab treatment when I was diagnosed with highly-active, or rapidly-evolving MS in 2012.

Yet, when I attended MS-oriented events, there seemed to me to be a clear division between those who had benefited from the rapid advance in MS disease modifying drugs and those who had not had the opportunity to take them.

However, I have also met people younger than me with a drastically declined state of health that no amount of disease modifying drugs could halt. Where do they fit in?

Over the years since my diagnosis, I have heard from fellow MSers:

  • You don’t really know what it’s like to have MS.
  • You’ll never suffer the way I do (from a sprightly 70-year old)
  • MS? You don’t know the meaning of it – you’re cured now you have those drugs.

Is this helpful?

We do at least have something in common – the abject terror a diagnosis of MS brings. So why can’t we unite in our fight against this illness rather than comparing ourselves on a scale of 1 – 10?

Why can’t we be happy that significant advances in medication have been made, so that future MSers will enjoy an easier life? Isn’t this something to celebrate?

I will be forever grateful for the treatment I have had. It has given me back valuable years with The Teenager. And I am saddened there are not such a vast range of treatment options for those with a more progressive form of MS.

Yet, if we can unite, and stand up to MS together, no matter what hand it has dealt us, surely we are stronger?

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MS – The Interview

forgiveMS is fairly busy these days – 100,00 of us to pester in the UK alone and millions across the world.

So it was fortuitous that it could take time out from a hectic schedule to settle down for a cosy chat:

MS: How’s things? Bad, I hope? Any more nerve pain?

Me: Funny you should say that, but yes. Don’t you ever give up?

MS: Short answer: No.

Me: Long answer?

MS: Well (long pause). It’s interesting, don’t you think? Push you just that little bit more?

Me: Really?

MS: I’ve always said – and no word of a lie – you have to be tough to live with MS. I have, haven’t I?

Me: Erm, yes?

MS: So. The way I see it, I’m doing you a favour? So, it’s bad, it’s sad, it’s painful, it’s isolating. And?

Me: What do you expect me to say? Thank you?

MS: Actually, yes. Whoah, stay seated and put that vase down. Listen. If I’m honest, it’s fun – all that freaky tiredness, making you walk funny, seeing you drop stuff. It makes me laugh. And?

Me: And what?

MS: Well. Let me think. You were diagnosed in – hang on – 2012? Yes?

Me: Yup.

MS: And what’s happened since then? Still with that bullying boss? That useless boyfriend? Still harbouring a vague notion of, and I quote, being a writer?

Me: I know what you’re doing.

MS: Good.

Me: You’ve ruined my life. I went through hell. My son was scared. I was scared. My future is uncertain.

MS: I haven’t ruined your life – you have a different job now and you love it. Your son is doing brilliantly. You’re not scared, you’re fearsome. And like anyone else on this planet, your future will always be uncertain. Deal with it.

Me: Why do you pop up so unexpectedly? Cripple me with absolute fatigue when I least expect it?

MS: Like I said, it’s fun.

Me: That’s unfair.

MS: Life is unfair. Are we done now? I’m very busy you know.

Me: I hate you.

MS: I hate you too. So we’re quits.

And with that, MS leaves.

But not quite …

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