I’ve Nothing Awful to Write About My MS This Week
Many of you will remember doing jankers (detention) in school. Well, those of you who easily identified with “The Breakfast Club” will. If you never did one, let me educate you!
A teacher’s favorite devilish ruse was telling us to write about being in an enclosed white space. They all did it. In their version of hell, it probably snowed a lot! Newbies groaned while we old lags were simply doing our time.
I had so many detentions that I basically had a novel going and would simply pick up where my last splurge ended. Nothing original mind you, probably my precocious take on Orwell’s “1984.” Not that most of my teachers had even heard of it, let alone read it.
So, I’m well-versed in having nothing to write about.
As I sit here with my bedroom walls closing in.
OK, OK, my desk is downstairs at the front of our house. It’s located in a lovely bay window, and I get to sit at it and watch the world saunter by. Usually a particular urban fox will lollop across my front garden at 5 p.m. Not today, though. That reminds me, I have to take my concoction of drugs for my numerous comorbidities. Back in a bit.
Thankfully, there’s even a new comorbidity to report. See, an autoimmune disease will never let you down! It seems I have a touch of vitiligo. It was spotted and diagnosed by my wife, Jane. Why bother a doctor when you have the power of the internet? It also might be triggered by trigeminal neuralgia. As I have both, come on in my bodies, lovely!
Thankfully, vitiligo doesn’t seem to be particularly serious, and as it’s only on the sides of my neck, Dracula might find it a trifle off-putting.
My Dracula repellent. (Photo by Jane Davies)
Onto some good news: I’ve finally got round to having a hoist fitted so I can actually get into the pool in our back garden. I know that having a pool is de rigueur in many U.S. states, but here in the U.K., it’s somewhat unusual. We didn’t install it, it was here when we moved in. Honest, guv!
Pools don’t add any value to a house, either, as the cost of maintaining them is steep. Since the effects of MS began to take hold, these costs increased significantly, as I could no longer be our pool boy. Synchronistically, a close school friend of my son ended up working for a pool company and is now ours. Handy.
Maybe it was because he spent so much time in our pool when he was a kid. It was a great boon for us and our large extended family.
Anyway, the cost of the hoist itself is beyond staggering (something I used to be good at). I put off buying it, wondering if I’d be in any state to actually use it. I haven’t so far, as the weather this week has been terrible.
So, when I finally take the plunge — I’ll report if I surface!
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About the Author
Ms Valerie Johns
My SPMS is speeding up. I;ve been given a Palliative Care doctor who is wonderful.. He knows so much about MS and
the inevitable end I'm not looking forward to. I am making arrangements to have a medically assisted death. I will NOT be parked in a so-called Facility here, Been there, done that and had to fight my way out of it. I've seen the way they treat people with serious disabilities, bu they won't be doing it to me. My Neurologists say they expect the MS Clinic at UBC to reopen in September. I'm looking forward to seeing my team again. I'm not ready to die yet, but am preparing the paperwork, leaving it undared/unsigned until it's time. I'm on a heavy and getting heavier dose of Methadone, getting heavier, It hasn't really kicked in yet and if I need Tizanidine the two definitely do not mix. My RN sent me to bed and told me to stay there, but I needed something to eat, so I poured 3 V8s in a glass with lots of salt to bump my low BP. I know what to do when that happens. Fell asleep, woke up at 5p.m. well rested. I'll be having Oatmeal for supper. SPMS is a nasty way to go.
John Connor
Hi Valarie I expected as much. I decided a long time ago to not let things progress that far. It will be hard to do but what you’re going through is a lot harder.
It must have been difficult for u to have the energy to even write this.
Thank you. x
JILLY
Hi John Connor. This is a bit off topic but OMG you were the TV casting director for “Black Books”, I loved that show and have it DVD. It was so funny.
Jilly
John Connor
Yup. Funniest sitcom I ever worked on! My wife, Jane, was the other CD. It's a long story, but she sneaked Bill into the other part! It was the one show where I could really fuse my background in live stand up into casting. In three seasons, it won the BAFTA for best sitcom twice. Ta, for noticing. x
Sandra Buchanan
Hi Valerie, I've got SPMS too and although I'm not as far down the road as you I was very interested in what you said, particularly the arrangements you are making regarding a medically assisted death. Can you tell me more? A lot of what you wrote went over my head as I suspect you are on the other side of the pond from me.
Jenny Orlov
Hello John, I love your sense of humour, despite the challenges of MS.
Take care!
Wendy Hovey
We also inherited the pool with the house, honest, and maintaining it has been a nightmare. Pump broke last August, no new pumps available, supply chain issues, blah blah blah. This all led to zany adventures wherein we finally successfully rehomed three green frogs before adding chemicals to the back yard frog pond, I mean swimming pool. When we dumped the frogs out of the bin and into their new pond home we were treated to the sight of two of them making new frogs. What else would you do when trapped in a plastic bin overnight? The chemicals seem not to be working. How do we fend off a new frog invasion? Stay tuned for these and other amazing adventures...
Jilly
Your welcome John, I was so happy to even get close to someone that worked on a great TV show, even if it's online. Waving from New Zealand. I also have the boxed set of Red Dwarf and Lexx. Bill has been in New Zealand over the last few months and has be on a TV talk show, called Patriot Games. He asks questions to a panel of NZ'ers and AU'ers about the history of their countries. I wonder if he lives here now.
John Connor
I think Bill is still here in the UK. But hey, I'm so far out of the loop these days - it's, er, looped! PS My wife [Jane Davies] was also the CD on some series of RD as well!
John Connor
There should be loads of pumps around! If u've got someone who can physically deal with it u can get enormous quantities of liquid chlorine [20 liters https://www.cleaningproducts.net/liquid-chlorine-sodium-hypochlorite-15.html?gclid=EAIaIQobChMI7obrg-u_8QIVD-rtCh3W7wMfEAQYBCABEgIkKfD_BwE] If poured round the pool it will clean it sans pump! Never thought this would become a pool advice col!!!!!
JILLY
Your wife was on Red Dwarf as well, that's really cool John. I like Fringe also, but it's too expensive to buy on dvd and I have seen full series twice, it's one of the shows that you get more out of if watched twice. It got a bit complicated at times.
Hey it's nice, I’ve Nothing Awful to Write About My MS This Week page lol.