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.
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.
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.