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If We Were Having Coffee – Life Musing #12 – Wheelescapades

If we were having coffee I’d apologise for being AWOL, there hasn’t been much to talk about of late. And what there has would turn into a rant. That might be coming soon.

I’ve been mostly reading, so nothing much has changed there. It’s been a reading kind of year. When you can’t go many places in person then why not go there in mind.

If we were having coffee I’d tell you I just finished ‘The Humans’ by Matt Haig. My third book of his and I thoroughly enjoyed it. I won’t give too much away as my review will be coming soon (what else would I write about). He writes the kind of books that make you look at life and appreciate it for what it is. Random, confusing, fragile, unbearable and beautiful.

If we were having coffee I’d ask if you can believe it’s October? Because I can’t. Summer seemed way too short and not quite hot enough for my liking. Not consistently so anyway.

Even though the sun seemed often hidden, I managed to get my fair share of sunburn. More than my fair share even. It seems I’ve become ridiculously sensitive to light. I know I often joke about being a vampire, my pure white skin that seems to shrivel at the sight of the sun. But now it’s a whole other level of vamp.

If we were having coffee I’d explain to you that I’m not the only one experiencing this change. It seems to be a common side effect of taking Risdiplam. The first oral medication for SMA.

I’m well over the 100 day mark since starting Risdiplam. (Also known as Evrysdi, now it has been branded). It’s still not available on the NHS, but there are some amazing people pushing for that to happen.

I haven’t experienced any major gains as yet (still practising for those cartwheels!) but I’ve also not noticed any decline. And that’s the main aim of the game. There are days when my cup of tea feels slightly lighter, easier to pick up, and days when I find myself wondering if I’ve always taken breaths quite that deep. But there’s such thing as a placebo and mind tricks and belief being a powerful thing.

Movement to me is so minuscule, though. It’s one gram at a time, not a kilo. Deterioration has never happened overnight, so I don’t suppose a gain would either.

If we were having coffee I’d tell you no pain no gain. I’ve learned that you need to put stuff in to get stuff out, and by that I mean exercise. And by that I don’t mean jogging.

I’ve been back on the crochet, and made this little fox.

Side view of an orange and white crocheted stuffed fox toy  it is on a brown fabric background

Keeping the fingers moving is crucial for me when not much else does what I want it to. Don’t use it you loose it, means more than ever now that I’ve been given the amazing possibility that Risdiplam provides. A pause in time, in life, in ability. If only that pause was at 14 years old and could still scratch my face or lift a phone to my ear.

If we were having coffee you’d tell me now is something. And I’d absolutely agree.

If we were having coffee I’d tell you I parted with some books. It wasn’t easy but I was having a de-clutter in preparation to redecorating, and I’m not one for rereading even though I hate to let them go. I kept some, though, because what are bookshelves for.

There will be more about the decorating soon. Because it’s not all straightened when you have to plan around medical equipment.

Here’s a sneaky peak at the furniture. I think George cat approves.

A white square bedside table on long wooden scandinavian style legs  a black cat is sitting inside where the drawers should be

If we were having coffee I’d tell you I’m going back to basics. On the de-clutter I found some puzzle books. I used to love a crossword magazine. But then everything became an app. Which is good for accessibility and easier on my hands. But sometimes the feel of paper is what you need. It’s also great for the fine motor skills.

If we were having coffee there would likely be cake. Not that you ever need a reason to eat cake, but The Great British Bake Off has started and that means cake eating season is here. I can’t get through an episode without the urge for something sweet. Or bread. I love bread week.

If we were having coffee I’d ask if you saw the intro to episode one? Because if you haven’t then you should. And if you’re not a GBBO viewer then just watch the intro anyway. It made me so happy I’ve watched it three times so far. Note I said so far.

I’ll be the first to admit my doubt when GBBO moved from the BBC and had its overhaul. The national treasure that it is. As much I love and miss Mary Berry, Mel and Sue (I still want you all back!), I’ve warmed to the newbies.

If we were having coffee I’d tell you I’ve always loved Noel Fielding, his surrealist humour, creativity and epic barnet. The Mighty Boosh is still one of my favourite shows.

If we were having coffee I’d ask if you watched The Mighty Boosh? And if you didn’t, then why?

Also back on the telly box is Vera, the detective I aim to be. Stubborn, grumpy, and witty, she has a spark in her eye and gets the job done. The intro music alone makes me feel at ease. It’s the perfect Sunday evening comforting murder mystery.


If we were having coffee what would you tell me?

Title text ‘If we were having coffee - Life musings #12’ is in white text placed over a photo of a glass cup containing dark brown liquid

Published by Gemma – Wheelescapades

Whenever friends and I are out we always end up discussing, critiquing, analysing where we are and what we are doing. From talking about the food we are eating, the soap in the toilets, the awful bus journey to our destination, anything and everything we encounter.
Because of my disability (SMA type2) many of the situations we get into, issues we discuss and laughs we have can be due to wheelchair access. Often me getting stuck in mud or shingle, or me making my way through the most cram packed shop you can imagine, wondering how I am ever going to find the way out again!
I aim to write a blog that describes these dramas, tells stories of our laughs, adventures and frustrations, while giving detailed information on accessibility and wheelchair access.
Also I like tea. ALOT. The quality of the tea often determines my return just as much as the accessibility.
View all posts by Gemma – Wheelescapades


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