if we were having coffee

If We Were Having Coffee – Life Musing #12

Gemma - 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.

23 thoughts on “If We Were Having Coffee – Life Musing #12”

  2. For sure we have reached the end of October, oh wow, and less now only 2 months to Christmas. With everything going, a new baby in the family, and some family members that had to have surgery recently, etc. this year flew by and I am trying to catch my breath.
    We are having a rainy period here at present, and its not likely to stop for a week or two, so enjoy whatever you have.

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  3. Over coffee I would tell you October has been incredible weather wise. Warm days where I can walk home without a jacket. Leaves changing color so red, yellow and orange. I’m getting ready for National Novel Writing Month in November and also I signed up for an oracle card class so full-one month for me. This weekend finally got some winter clothes out. Sigh. So wish we actually where having coffee/tea and cake. I love my sweets also.

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    1. October was pretty good weather wise, but now November has hit with quite a chill!
      Sounds like you’re in for a busy month, it’s good to have projects on the go to keep you motivated and give you something to aim for. I’m looking for something to start in the new year.

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  4. I’m hugely late reading this. Given the delay, how many times, dare I ask, have you now watched the intro to GBBO’s first episode? I’ve never, ever seen it. Well, aside from snippets shown on Gogglebox. Never thought I’d say that, or admit to watching it. But I love it.

    I really, really do hope that Risdiplam works some magic, even if it’s microscopic and behind the scenes to begin with. It’s fantastic that there’s something to give you hope, and that really is priceless. I’ve got a good feeling.

    I’ve not got such a good feeling about the redecorating going quickly with George around. He’s such a sweetheart. If that were Virgil, as annoying as it might be if he’s sitting on stuff that needs to be moved, I wouldn’t have the heart to interrupt him. Is it the living area you’re jazzing up? I’m the same with books in the sense of not re-reading them (unless they’re non-fiction self-help style where you can flick through sections you’ve already read when you need a refresh) but I also don’t like letting them go. I actually boxed up loads, about 60 odd books, earlier this year. The bookshelf had long ago overflown so it was overdue. Anyway, it means you can get more books now, Gemma. Hurrah!

    The Mighty Boosh made me think of something else, totally unrelated. Do you watch Strictly Come Dancing? You know Robert Webb? Of course you do. What I hadn’t ever known was that he’d had live-saving open heart surgery two years ago. Crikey. He’s been on Strictly working his arse off for a while apparently but he’s had to bow out because it’s taking a toll health-wise. Always liked him, but now I’m in awe of the guy. Almost enough to actually try watching Strictly. Almost.

    xx

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    1. I do like Gogglebox, however they give away too many spoilers of things I haven’t got round to watching yet!

      Oh you really need to give GBBO a go.

      Having hope is amazing, I’m keeping your good vibes in a jar thanks! I have my review tomorrow…

      Oh I’m the same, cats look too comfy to disturb.

      I don’t watch Strickly, but I do know Robert Webb. I never knew that either, it goes to show we don’t know what is going on other peoples lives.

      Oh have I found a fellow Mighty Boosh watcher?!

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      1. You’re absolutely right on the Gogglebox spoilers. Often it’s stuff I don’t watch, but then you get the odd US streaming service series that’s been on my to-watch list for a while and I’ve got to turn away and cover my ears. Grrr.

        I used to really like Boosh! Haven’t watched it in ages though. Wishing you all the very, very best for your review today!! xx

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  6. I just love the format of this post!! What a great way to provide an update – nice and casual and chatty 🙂

    I could use some decluttering AND some getting rid of books (gasp!) – like you said, I don’t re-read very often, but how can I part with my favorites?? My precious …

    I love that you write about chronic illness AND books! So do I, though I have two separate blogs. I’ve been reviewing books for about 15 years – sometimes professionally and sometimes just on my blog. I love to read – and I agree – if you can’t get out into the world physically, do it through your reading!

    What a nice catch-up! And delicious coffee and cake.

    Sue
    Living with ME/CFS

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    1. Thanks. I aim for it to come across as a chat with friends, somewhere we can all have a little moan and catch up.

      Oh I kept my absolute favourite books, for decoration really!

      Oh I need to check out some of your book reviews and make my TBR even more unachievable! Please share the link to your book blog?

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  7. if we were having coffy I’d tell you that I inicially thought my wordpress app wasn’t notifying me about your posts but now realised you were not publishing any new 🙂 yeah basically a long rant to say that I missed reading your lbog and am glad you’re back.
    i’d also tell you these past few weeks have been a complete whirlwind (probably Friday’s blog post would explain) and am tired of feeling so many emotions hahahaha
    also I can eat cake anytime any day! am craving a good one as I write this comment thanks to you mentioning it hahahaha
    I should probably stop rambling so much in comments of bloggers I follow…

    http://www.blindgirlmusings.wordpress.com

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  8. If we were sipping tea..there’s always one Gemma and that’s me…sigh…I love “Bake Off” and Vera plus now Strictly’s back there is not much else getting done..back to back downloading and viewing…Lovely to see you back 🙂 x

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      1. I told my wife that Jurgen, the Italian baker with curly hair, and the vegan young woman were the final three…still learning the names! No matter what happened, I love how they help each other, support each other, and seem to truly care when someone must leave…such a terrific, upbeat show in a time when most reality competitions try to force conflict!

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