Category Archives: My Ramblings

Just Go For It …

A small film crew is visiting my even smaller cottage on Sunday, to create a short film of my life with MS.

I had great chats with both the producer and creative director this week, working out the best angles and what to focus on.

Here’s what went through my mind:

Best angles – will there be a make-up artist?

Can I be contoured and strobed to slim my pudgy face down?

Will there be a generous amount of Photoshop in the final editing?

My cottage is dark (yay), almost like being candle-lit. Result. Then I found out they’ll be bringing super-strong lighting. Meh.

Focus – we chatted about my life with MS, what inspires me, what motivates me. Writing seems to be the strong theme – in fact, it seems as if, through my blog, I am writing my way through MS?

All this got me thinking. They will film hours of footage, to be reduced to a few minutes. What do I want to convey? What is important?

For me, the beauty of writing is that I can make mistakes. I can delete, add, rewrite. Perfect for MS; I’m the one in control, even if my dodgy typing fingers have other ideas.

However, I’m understandably anxious as I’m probably the least photogenic person on the entire planet and I have a slight lisp. Plus a Scottish accent. And the pudgy face. Hair up or down? I haven’t been to the hairdresser since January.

Despite all the negatives, I said yes.

What does it matter? I may carry a little more weight (ok, a lot, but I’m working on it). I may have a pudgy face (perhaps they can film me from the nose up?). I may lisp, but that’s me.

Ultimately, I think I have a lot to say, and a lot to talk about. Sure, MS was a wrecking-ball, but we rebuilt and I think this will shine through.

You heard it here first, but we also have The Teenager on record, agreeing to be filmed. He might not wake up until 1pm, but he’ll be there. After all, he is the main focus and the reason I get up every day and carry on.

Do you think they’ll send a catering van?

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Halfway There

Around my 25th birthday, I drank a whole lot of different-flavoured vodkas in a smart Polish restaurant in West London, feeling very sophisticated.

A few years previously I’d celebrated by necking vodka from the bottle on the roof of a small-town railway station somewhere in Poland, and I felt free and full of excitement about the wide-open future.

Now I’m approaching my 45th birthday, I will no doubt be tucked up in bed by 9pm with a glass of water on my bedside table and a lopsided party hat on my head.

But, looking at it positively, I’m (perhaps) still only halfway there? At 25, I was halfway to 50. Now I’m halfway to 90. Not a bad age and a decent one at which to bow out.

Casting a beady eye over the past, it’s easy for me to see this life as a series of fabulous adventures, terrible dead ends and a whole load of missed opportunities, like one of those infuriating tiny, plastic maze games we had as kids, with a little silver ball we had to angle and guide into its final slot.

So was MS a wake-up call despite its terrible ramifications?

Physically, yes. I transformed overnight from a somewhat harassed single-parent with a job that fitted around school hours to someone who was quite literally on the floor.

I was planning and studying for a path to career enhancement, once The Teenager was safely ensconced in high school and life would become a little easier.

Tiredness back then was a long day in work followed by all the child-centred tasks after work. And repeat.

I really, really didn’t know anything about tiredness.

Mentally, MS was akin to being punched in the gut, over and over again. But, like they say, when you’re in the gutter, you’re still looking up at the stars.

When you go back to zero, the only way is up.

I liked writing as a kid and thought there was nothing to lose by trying it again. Six years later, I’m about to start a PhD in Creative Writing. Weird, huh? And all thanks to me venting my MS frustrations all those years ago.

I’m no academic, just a person who is passionate about writing the truth. My studies will focus on the MS ‘it’s all in your mind’ scenario that happens to so many of us, including me.

‘Hysterical’?

That’s me.

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Reach Down, Raise Up

MS sometimes feels like a ladder.

Six years ago, it felt like I was somewhere around the bottom, in the murky depths, desperate to get a handle on the slippery first rung towards diagnosis, treatment and, well, ‘thank goodness I now have an explanation for what the hell’s been going on for the last year‘.

I spent hours and hours on the MS Society forums, asking question after question. Patient people who had been there before answered every niggle, every question, no matter how weird it sounded.

They reached down and pulled me up and I will forever be grateful to them for their guidance and support.

Limboland is a cruel place to be; essentially, you wait there in the ‘hope’ you have another relapse and are then moved from a single episode to ‘multiple’. So, you pray to get worse, to get better, because it’s only then that you can access the treatment that will potentially stop the next relapse.

I vividly remember the elated posts from fellow ‘Limbolanders’, ‘Finally!! I’m diagnosed!’ I was envious beyond belief and confused in equal measure. How can you be so happy to have MS?

I soon found out.

Like a magic door opening with a secret code, my eventual diagnosis offered up a myriad of treatment options.

Next week I’m taking a day off work to train with the MS Society as a Support Volunteer. The focus is firmly on the social model of disability, which centres upon choice and control.

I hope to learn skills which will allow me to reach out to pre-diagnosed people and those who are newly-diagnosed; I want to learn how to offer non-directive support and take on board an individual’s unique circumstances without judgement.

I’m looking forward to the course and giving back at least a tiny bit of the support I received all those years ago. If I can ease someone’s journey into life with MS, I’ll be over the moon.

Volunteering often sounds like a massive commitment, and I will be honest as to how much time I can offer, but it could be as little as one phone-call a week, or one quick coffee. Hopefully I will be able to offer more, but if anyone is thinking about volunteering, go for it.

I’d love to meet that one particular person on the MS forums (amongst many others) who took me through, step-by-step everything I asked, with her incredible medical knowledge.

I probably never will, but the one thing she said to me is, ‘if you found help in what I have offered, do the same, when you are ready.’

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The More You Tell Us We Can’t, The More We Just Might

I don’t know how you guys are doing, but life under our present government is an anxiety-inducing experience of hell for me.

A weird, subversive world where right is wrong and wrong is worse, way worse than you could ever imagine.

And a world where MS is magically reversible because a former A&E nurse says so, after ‘observing’ you for half an hour.

MS. The illness they can’t even find a test for, far less a cure.

Cast your mind back to the last General Election – all those earnest politicians vying for your vote; the couple, the couple with 2.5 kids, the retired couple, the middle-aged couple. Where were you?

Did you once hear our leaders address the 1 in 5 of us who are disabled? I’m a media junkie and I didn’t hear a thing.

I heard about tax relief (I don’t earn enough), inheritance tax (I don’t have enough), and tax in general (I live at sub-poverty level). I heard about ‘hard-working’ families. About ‘hard-done-by-pensioners’.  Disabled people? Nope.

In fact, I was so annoyed, I responded to a BBC Wales tweet and ended up being interviewed, my absolute pet-hate, but the point had to be made. Not that it made much difference.

Our government was simply not listening to people with disabilities, Let’s be honest, few of us will get through life without some form of ‘disability’, so why be so shy about it?

Truth be told, we are simply not media-worthy, and the whole transition taking place from Disability Living Allowance to Personal Independence Payments is just another modern tragedy taking place in every single street up and down the country, but is under-reported on a terrible scale.

Want to know a secret?

Should you live long enough (and many, many illnesses are non-age-specific), you too will be disabled! Yep.

I am absolutely fed up with being ignored by politicians unless we are a good excuse for a photo-op. Some of us are in wheelchairs, some of us are not. Weirdly – we are all different.

Is it fair we have to fight just to get a taxi? Just to keep our job?

In my view, there has to be a backlash soon.

And it cannot come soon enough.

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How Little Is Too Much?

This blog will be six years old in October. Six!

When I first started firing out my random thoughts to the blogosphere, I knew I’d be buried in amongst the millions of other blogs out there.

I just wanted to write, get all the confusing thoughts down, in the small hope that someone, somewhere would understand.

I blogged anonymously, as I was experiencing horrendous workplace bullying due to my MS and had a feeling it would end up as a legal matter, which it did, after I was fired suddenly.

I took comfort in the cloak of anonymity, writing painfully honest posts about anything and everything as me and The Teenager adjusted to a whole new reality. And the reward was an incredible amount of support that flowed back to us. We chewed over problems, discussed different options through comments feedback and Twitter.

In short, my blog became a vital lifeline.

You guys saw me through Alemtuzumab treatment, three times. The subsequent thyroid problems. The weight gain. Adjusting to a more limited but still fun way of living. You generously shared your own experiences and advice about symptoms, getting through my studies, cheering me on all the way.

You also watched The Teenager grow up, which is particularly special to me – as someone once told me, ‘it takes a village to raise a child’, and despite being alone, your input saw both of us through some pretty turbulent times. Regular readers might still remember his School Uniform Protest.

Even though he’s now at University, he still asks me to post this photo or that comment on Twitter – he’s got a following all of his own and I know it means a lot to him.

The blog is now read in over 150 countries, the latest being Rwanda last week (hi!). I’m absolutely delighted. And when people buy my book and tell me it’s helped them through hard times, I grin for days. So many of you have emailed me directly and become firm friends.

Closer to home, and perhaps inevitably, now I blog under my real name, my rambling thoughts are now read by people I know. Which puts a whole different slant on things. It’s the same as leaving an open diary on the table.

Although my recent posts are still personal and open, I’m aware that I hold something back each time. I go so far, then stop. I’ve been mulling this over and over in my mind and am still unsure what to do.

Should I just not worry, go for it, life is short and ultimately, what the hell? Can you be held to account for what you feel? Or should I still temper what I write, creating more even-handed posts?

As always, I’d love your advice …

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