lifestyle, Musings, Risdiplam

If We Were Having Coffee – Life Musing #10

Gemma - Wheelescapades

If we were having coffee it would be in my garden. Because we’ve reached that stage again. Come full circle if you like.

It’s been over a year since we were all told to stay at home. And I’ve taken that instruction, like I do most things, with determination, will power and a huge amount of stubbornness. If I do a job, I do it properly. I’m no quitter.

You might want to bring a hat and scarf, maybe a brolly and some sunscreen just to be sure. Because the weather has been rather British of late.

I went outside and got sunburned in March. Partly because I’m stupid, and partly because I’m a vampire. A week later it was snowing. And right now, a week into May, the heating is on and I’m under a blanket.

Did we use up all the sun in lockdown #1?!

This time last year I had already started spamming you with my tomato growing adventures. The poor things aren’t even in the garden yet due to hail, wind and frost. (Yes, a pandemic ages you.)

I have started with the flower spam though. I really grew to appreciate the garden last year, and that hasn’t changed.

Theses frilly daffodils and fluffy tulips are my faves so far. If you’ve got time to waste you can catch me on Instagram.

White and pastel yellow and peach coloured fluffy daffodils.
An open pink and white tulip that has frilly edges. There are some closed bulbs and green leaves in the background.

If we were having coffee you’d realise it’s been a while since we chatted. Not only does conversation run a little dry when you’re mostly just crafting, reading and watching Netflix, but I’ve been weirdly busy. Not for pleasure.

I’d tell you I’ve been out more recently than I had in the whole previous year. I’ve been hanging out at the hospital.

There’s this drug, it’s called Risdiplam, and it’s the first oral medication that has been approved to treat my condition, SMA type 2. Although not available to access on the NHS as it’s not gone through NICE yet, there is currently an early access (EAMS) scheme that I’ve been being assessed for.

This has involved what I’ve been referring to as ‘The Great East Anglia Hospital Tour’. Where I’ve been to various hospitals for various tests to prove I’m worth a shot.

Long story short. I am. It’s a yes.

If we were having coffee I wouldn’t get too scientific, but I would explain that the aim of Risdiplam is to halt, steady, stop, slowdown the progression of SMA. The younger you are when starting treatment the more there is to stop. Risdiplam has had incredible results on children.

I would say it could have come 36 years sooner. But for some it didn’t come soon enough at all. I am privileged to be given this opportunity.

I’m an oldie when it comes to SMA and treatments, so just seeing no negative is a positive for me. To see no deterioration in strength and movement, to have no irritating side effects. The ability to take a deeper breath, cough a little harder, craft a little quicker, that, would be a massive bonus.

I’m not going to be doing cartwheels anytime soon.

My first Risdiplam delivery should arrive within a couple of weeks. I’ll give you little updates as and when on here and social media.

The irony is that, to receive Risdiplam on EAMS I have to be unable to have an alternative treatment that is administered by spinal lumbar puncture…

…at the same time as all this was going on I went into hospital for attempted bladder stone removal, where three anaesthetists tried to get a spinal block in, due to me being high risk for general anaesthetic. They failed.

I still have my enormous bladder stones, but I am getting Risdiplam.

If we were having coffee I’d ask if you’ve been vaccinated? I’ve been doubled Pfizered. The side effects weren’t all that bad, I was a bit fatigued, had a slight headache and the chills. A bit like that stage when you know you’re going to be ill the next day. Only I wasn’t. Let’s just say I’m assuming it’s a hell of a lot better than Covid would be. And as yet I haven’t started short circuiting or noticed any unusual stalkers. Bonuses all round.

If we were having coffee I’d tell you to get that jab as soon as you’re offered. What reason really have you not to?!

I don’t know about you but, I’m ready for life again.

If we were having coffee I’d tell you the afternoon tea withdrawal was kicking in so bad that I ordered some smoked salmon to make my own sandwiches. A delight I usually reserve for its experience. Next I’ll be ordering a Boots meal deal to eat at home. Is that a thing?

If we were having coffee I might offer you some cake. I’ve been inundated. It was my birthday a couple of weeks ago. Who knew last lockdown birthday that there would be another.

It wasn’t all that bad though, I was allowed my chosen six in the garden. It’s a good thing I don’t really like people. Of course, the weather was freezing cold (because that’s life), so I got my heated throw and trusty extension lead, a mug of tea and we had a little picnic. It’s never too dull for scones.

A dark red tray filled with slices of cake, scones and tubs of jam and cream.

If we were having coffee I’d have to show you this fantastic collection of Bob Ross gifts I received from some friends. If you don’t know Bob Ross then you’ve found yourself at the wrong blog. We watch him on a Wednesday.

Bob Ross figure, paints and colouring book.

If we were having coffee what would you tell me?

An image to pin. Title text If we were having coffee is placed over an image of a mug filled with dark liquid sitting on a white marble table.

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.

18 thoughts on “If We Were Having Coffee – Life Musing #10”

  2. Wow, so much news. Good on ya for the treatment–sounds promising. Crafting faster!? I adored your 100 days of gorgeous rocks. Keep all the crafts and beauty coming! Around here, we’re waiting for the school year and spring sports for the kids to end, so we can enjoy some lazier days around the neighborhood pool and at the skate park. We head to OH in June to visit my dad, and I’m hoping my work schedule will lighten up a bit so I can enjoy summer on the lake.

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    1. Oooh summer on the lake sounds like just what I need! Only today have our restaurants etc opened up for dining in, so anything too exciting still feels a bit of a way off.
      Thanks for the kind words, I really enjoyed the stone painting. I wonder what other crafts I should check out….

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  3. Oh…meeting in gardens, soon to be meeting in homes. Feels a bit strange after all this time.

    Our weather up here has been the same. One day, I was enjoying the sunshine, the next, utterly amazed at the size of the snowflakes. Typical British weather!!

    I’m so happy for you getting Risdiplam. It sounds like it really could benefit you and many others. I wish you lots of success with it. (I also hope they can find a way of curing the bladder stones. They must be painful!)

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    1. I know, I don’t want to get too hopefully that life might be slowly returning.
      It’s just been dull and grey here this weekend, I wonder when the sun might return. I’m certainly ready for it.

      Thank you, I’m anxious but excited about Risdiplam. Just waiting for it to arrive now.

      I hope you’re well?

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  4. Over coffee I would say the same about the weather. We had some lovely days in March and WHAM April damp and cold. The trees just started budding in May! You are ahead of us flower and bud wise from your Instagram pictures. Happy you have been vaccinated and also the drug trial. Why not? Hard to believe over a year since we shut down the first time. We are back in lockdown as April our numbers started climbing. Hoping vaccine and this lockdown gets things under control so we can have a “normal” I now say that loosely summer. take care and so happy to see you back.

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    1. The weather this year just seems to be so confused. But I’m definitely ready for summer.
      We are still slowly emerging from a lockdown here that started January. Next week the restaurants will reopen for groups of six, and reduced capacity in cinemas.
      It’s good to be back. Thanks for stopping by.

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  5. I love your determination to success in the stay at home instruction. I wish more people felt the same…

    I can’t even remember there being a summer last year. Time seems to be going without me being here. I am very, very much ready for proper sunshine and warmth now. Bring it on! I can’t keep dragging myself around in so many layers. We will have summer soon, Gemma. We will. A proper one, where you can turn the heating off and get out from under your blank.

    Those are some super pretty flowers. I saw the tatty pink one on Instagram and was amazed – I’ve never seen anything like it before. Absolutely incredible.

    FANTASTIC bloody news about the Risdiplam! How freaking awesome and exciting. So a few weeks and you start it, then I imagine they keep an eye on you for the duration of the trial. How long will it initially be for, do you know?

    Hahahah I love that someone bought you a Bob Ross gift set – check that little bobblehead-looking thingybobby. Is that a pencil sharpener or a statue to put on your bedside table so you see Bob as you’re drifting off to sleep? 😉

    xxxx

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    1. Sometimes I’m a bit too determined for my own good!
      Oh, time really does seem to be going without us doesn’t it. It’s been a bit weird. It feels like only yesterday I was out gigging and afternoon teaing, but at the same time it feels like a lifetime ago.
      I’m nervous/excited for the Risdiplam to arrive. As long as I get no adverse effects I can have to for 5 years even if it doesn’t get licensed in the UK. If it does become available on the NHS and it suits me, then it could be for life.

      Ohh that Bob Ross doesn’t only have a giant wobbly head, he also talks to me! There’s a button to press and play some of his famous ‘happy little’ quotes.

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  6. If we had coffee I would tell you, I’m vaccinated too. There has to be some perks to the job. I’d have a moan about my poor Ed being bottom of the que as a bus driver, as it seems silly especially as he worked all last year. Imagine bus drivers all over the country spreading covid.

    I’m excited to hear about how you get on with your new medication. Love Reading your blog.

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    1. I’m glad you’ve been vaccinated. I don’t think the whole vaccination priority order has been fair. There are so many key workers that have been forgotten.
      Thanks for stopping by, hopefully we can do real coffee sometime!

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  7. Thanks for the update and good luck to you going forward! My wife and I were both “one and done” with Johnson & Johnson a full month ago, so while we still mask up and maintain social distancing when needed, we are also so happy to be on our way to a “new normal” again…what a year 2020 was!

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    1. Glad you’re both been able to get Jabbed. Don’t think we use the Johnson here. We take the next step towards normal next week, when meeting inside will be allowed and restaurant dining in will restart.
      Thanks for stopping by.

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  8. if we were having coffy I’d tell you I’m in love with this segment of your blog!
    I’d also tell you that thanks to the dire situation of Covid in my country so my exams have postponed again and I’m back to reading my beloved books! and I still can’t forget Haben Girma’s book! it was just amazing and I want more so I might give it another read haha!

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    1. Thanks, I enjoy writing these posts and getting replies. It’s like having a good chat!
      I’m sorry to hear Covid is so bad near you right now. Stay safe. It’s good you are getting chance to enjoy some reading. That’s something that’s kept me going through this pandemic. I haven’t read that but will check it out.

      Lovely to have coffee with you.

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