Three Coffees Later…

Okay so, Thursday didn’t go as planned. Don’t worry, I’ve got a new appointment. Believe me, as soon as I found out they’d screwed up my appointment I bolted out of there and hopped on a train to Dunkin’ – did I tell you I’m a Dunkin’ addict again? I was back when we first had one, something about their coffee just tastes amazing. I had two, and the donuts are nice too, but second to the coffee. I came home and had the motivation to organise some files which was nice as I watched some home videos from 2011. Aww, I had so much energy but was so shy! Then I caught up on Big Brother Canada and decided to try go swimming. I got back into town, but my motivation had escaped me so I phoned my mum and she was at a restaurant with her friend and graciously let me join where I had ANOTHER coffee and a gorgeous praline dessert with tonka bean ice cream – amazing. Even better, I got pizza and spicy chicken strips afterwards and came home to watch and digest all 37 Eurovision songs competing next month (my favourite is Finland). I also decided to stream it live on a whim and got all my equipment set up easily. So much so, I might do the podcast this way. Chelsea, my co-host, is a TV personality, she deserves to been seen AND heard. Thing is – we chat for hours about Scream, and in podcast form, I can edit out the gaps. I never get around to editing videos. Speaking of which, if I can, I’m going to edit a 20th Anniversary Version of The Clown. I was happy with the 10th Anniversary, but it’s in SD quality. I have programs now that can up the resolution of the DV camera to 1080p – and I think my Mac Mini can handle editing the large files! Plus, I’ve experimented with some of my own soundtrack. I have ideas, and I’d like to see them through to a finished product.

Dough Nut Ramblings

Today I am going to sign my DNR – that means Do Not Resuscitate. It’s been a very mentally, physically, and emotionally draining past few days as my family pet of 11 years, Kaiser, was put down last Monday due to his own failing health. There is no “putting down” of humans (well, I mean, there is, but you have to go Switzerland, and Sheila from Wild Wild Country is there and she looks way way too happy to be working at an assisted living facility). This will have to serve as some sort of catharsis because I need to move on and find something to look forward to. I need to learn how to find the joy in life when I know that life is precious – instead of struggling to eat, and drinking three coffees a day, and staying away until 5am which is what I have been doing. As it stands, the website is a bit of a mess that I need to focus on sorting out. The Music section is gonna be less about music and more about all the lyrics I’ve written over the years and hardly ever shared, with the mashups moved to a different page. I’m in the process of uploading a new t.A.T.u. mix project (my first since 200km/h In The Near Future) which I’m aiming to finish by 22 April. Then I have a psychology appointment. Then it’s Eurovision. Then I have a small break where I may record some new podcast episodes or video blogs. Then it’s my birthday. Then we’re getting a new downstairs shower fitted. And then (I hope) Neighbours shall be coming back and my life can feel like it has some normalcy and routine back to it (I don’t care how that sounds, that show was vital to keeping me sane during the pandemic).

Ladies and Gentlemen, Him.

I’ve been dreading writing this. Not because I don’t want to. But because I just don’t know what to say. I can’t sit down and plan the words that y’all sre gonna read. I can say them. I have no issue blurting them out like word vomit. I’m dying. I laugh and smile uncontrollably when talking about it as everyone around me crumbles into pieces. I understand the severity of my situation, or maybe I don’t, maybe it doesn’t feel real. Maybe when the pain comes I’ll feel differently. So what’s happened? I’ve a lot of gaps to fill. November was nice, I enjoyed the film festival. I used to be able to see five films in a day. Don’t have the energy to do that anymore. Christmas was nice and quiet. At the end of December I started some new medication to reduce my excess iron. I took it for 10 days and it absolutely wrecked me, my body became so sensitive to light I couldn’t do much of anything but lay in bed. I took myself off it and bounced back. Then my potassium levels spiked and even though I felt fine I needed to be admitted into hospital to be treated and observed. They brought my levels back to normal and I left after 3 days. Then this week I had a chat with my kidney doctor and she basically laid it all out on the table and discussed my options realistically. There’s only really one viable option and that’s end of life care. My kidney function has dropped to around twentyfour percent, and it’s not going to heal and get better. My excess iron and everything else that comes with porphyria means my diagnosis is only going to get worse. When you’re in stage four kidney failure, you’ve basically three options. Transplant, but based on my previous experience with a bone marrow transplant, I wouldn’t even survive the chemo. It almost killed me when I was 13, and then the transplant failed. Given it was from my sister, I couldn’t get a better match. So, if I did survive the chemo, my body would almost certainly reject the new kidney. Then dialysis. There are two types of dialysis. The one that involves blood is going to come with its own problems because of all the extra iron I have in my blood. Dialysis is I think a great way to live for most people, but for me, we don’t think my blood condition would stand alongside it. My porphyria would get worse. And the other type of dialysis is really only a temporary solution as it erodes the lining of the stomach so you can only keep it up for two years realistically. What it comes down to is quality of life over quantity. This kidney thing is going to get worse, and I would rather enjoy what time I have left than compound myself with constant medical treatment for the last two years of my life. So that’s everything you missed. I feel bad because I feel like this constant beacon of doom and I’m concerned nobody is gonna wanna be around me! My dad doesn’t wanna talk about it, and my mum is just crying all the time. So I did what any rational person would do and turned to Tiktok to vent my feelings. I thought screaming into the void would help but an unforseen consequence of having a rare and unique illness means that I acidentally started to get twenty, thirty, forty thousand views, and hundreds of followers. The upside is I guess I have something to distract myself with before reality comes crashing down around me.

Malsomnia

I used to be nocturnal but now I’m… I’ve looked it up and Hypersomnia seems like a good word for it. Basically I’ve started to enjoy waking up in the wee hours of the morning – or 1am, which to you might still be night. I love the quiet stillness and solitude and I can wake up very slowly which I much prefer over waking up to an alarm. I hate alarms. I hate that alarms are normalised to wake us up. Alarms should strike the fear of god into us and have us running to the cellar to seek shelter. Alarms shouldn’t be the way we are yanked out of REM sleep!

I looked up a list of prefixes and found that “mal” means bad/poor (like malnutrition) and definitely, if it exists, I can say I have Malsomnia. Sometimes I can sleep for 16 hours, like I did on Monday, but other times I’ll spend the evening walking 15,000 steps and then sleep for 4 hours and get up and walk another 10,000.

It won’t last. I know it won’t last. Once it gets icy, I won’t like walking. But for now, I walk, and I sleep, and I walk.

Soon I will walk to watch films, and sleep, and watch films, and most likely sleep whilst watching a film (sorry, Ghost In The Shell, but you were very nice to lull me to sleep), because soon comes the Leeds International Film Festival.