Happy 2025!
Things have happened since my last post, and though I have several drafts from the past year, I’ve not been able to finish them. So list it is. They’re mostly in chronological order. I’m hoping to expand on some of them later with photos, but trying to do those posts is partially why it’s been over a year since the last one. This blog is mostly for my future reference anyway 😊
As I’m not expecting anyone to read all this, the TL:DR version is a lot of things happened, but no longer having care workers in has led to an improvement in health so I’m no longer completely bed bound, just mostly. I’m happy! Izzy and Sammie are doing well! There are penguins!
- I managed to get on the ramp for my birthday (18th June)! That was the only outing I managed in 2024 other than the care home stay and hospital visits, so I’m really glad I managed it. My birthday was lovely, and I got a helium penguin balloon that took about 6 months to stop standing up.
- In July Sammie graduated with a foundation degree. I’m so incredibly proud of her, and watched her graduation ceremony at home, as though I really wanted to go I wasn’t well enough to even push through. Izzy did though, and took her out for food afterwards. (Her grandparents were also at the ceremony.)
- I met my brother’s partner. He’s awesome! I’m very happy for them both, and they’ve since moved closer to where I am. My body was not so happy about the visit, and I crashed hard. Worth it though.
- Izzy got a little blue fairy penguin tattoo on her arm. It’s my favourite type of (real life) penguin, so it reminds her of me. Little Dude is so adorable, and it’s hard to contain my emotions when I see him.
- The home care situation got worse. Izzy was having to micromanage the care workers while also trying to work, and I was panicking and having nightmares because I had no idea who was coming or when. At the end of October, Izzy cancelled them, and I started sleeping better again.
- Izzy got me a 4K TV in a sale as an early Christmas present. It’s big, and meant I can now actually make out what was happening on Twitch and YouTube. Penguins look amazing on it 😊
- In November, I found a new lump in my left breast, resulting in an urgent appointment at the breast clinic. Luckily it’s not cancer (it’s a fibroadenoma, which is a type of benign tumour). The appointment went as well as it could, and they even agreed to do the follow up by phone so I didn’t have to go back unnecessarily. At least one part of the NHS still works.
- I crashed hard after, so Christmas was very quiet. I still have presents to sort out when I can get my brain working. Izzy made her roast potatoes with Christmas dinner though so it was amazing.
- Somehow Sammie is 21 now?! Time makes no sense. She’s amazing though, and I’m so proud of her.
- I sent Izzy and Sammie to see a pantomime. They loved it. I watched the CBeebies one which was fun.
- As of this year, I’ve started being able to watch some films and TV shows in bed. Watched Wicked with Izzy (one of her current obsessions) and it was amazing. Improvement is good!
- Got a cleaning company in for a declutter and big clean. They also helped organise removing all the stuff, which was a big stumbling block for Izzy. It helped a lot, even if I could only manage about an hour in my room over two days.
- In February we were meant to have a new care agency come out to assess us, but they ghosted us. We heard from a neighbour who used to work for them that it’s probably for the best. We’ve not heard anything from social services about it since, but Izzy is coping okay for now.
- Izzy was meant to go to Belgium on holiday in March, but she couldn’t find a care home who could take me so she had to cancel. This obviously really sucked, but it did mean I didn’t relapse again.
- She had also booked tickets to go see Starlight Express in London the night before getting the Eurostar. She was really upset about missing it as she’s currently really into musicals and she loves trains!
- I worked out that if we prepared well enough, she went down that afternoon and came back on the first train the next morning, I could probably manage one night, as my hands had improved enough that I could manage my own tablets in a pill box. So we tried it.
- It went okay! The hardest part was taking nearly two hours to do a pad change in the middle of the night (usually takes about 5 minutes with help) as I had to rest between each movement and my hands still don’t work great, but we now know I can do it as a one off at my current level of health. This wouldn’t have been doable a year ago.
- I slept through most of the next two weeks. I also needed to get Izzy up nearly every night, which also confirmed I do still need nighttime care. Luckily we had prepared for this, as we’re now well aware of what happens if I overdo it. At least it was for a good thing, and me staying home helped it be less bad.
- By the 3rd of May I’d recovered enough for Izzy to try a day trip. She went to The Deep in Hull as she was stressed (mostly with work) and thought penguins would help. They did! I was asleep most of the day, which was ideal as I didn’t need anything. This also meant no payback! We’re planning more day trips for her when we can.
- Throughout the last few months, outside of crashes/payback, I’d been working on improving my sensory exposure and being more upright in bed. It’s been working. The hardest part is trying not to do too much at once.
- I’ve also been more able to go on my computer, and set things up so I can stream games from my computer to either my TV or my tablet, so I can play them without needing Izzy’s help to get things set up. The lightened controller SpecialEffect lent me has also been key to this. Yay independence!
- By the 10th of May I felt confident enough to try being hoisted in my wheelchair. And it was fine, so I ended up going out, and to Tesco for the first time in years. It was amazing seeing how much has changed, what’s popular now, and penguin spotting. Prices have definitely gone up.
- I also got the bus back up the hill as Izzy is very out of practice and she’d still needed to get me up the ramp. Apart from my wheelchair not fitting on the first bus we tried, it went well! Apparently my motion sickness has also improved. I still felt fine when I was put back into bed which was also a good sign.
- Later that week I’d had basically no payback other than my neck going into spasm as I’d held my head up by myself too much, so I went into the living room to keep Izzy company while working. It’s so nice just to be in a different room.
- On the 18th I did something big that was technically overdoing it cognitively and physically, but I’m pretty sure it’ll be worth it. More on that in a future post.
- Izzy and Sammie went to see Grace Petrie! They loved it! I got awesome photos of them, and bridges!
- Since then I’ve been mostly recovering from big thing, my best hours have been in the middle of the night, and I’m in the few weeks before my B12 injection where my fatigue is much worse, so I’ve stayed in bed. I’ve still been able to more for myself than last year, and if Izzy didn’t have to be asleep at 3am for work I’d probably be okay to at least go in the living room. Silly sleeping patterns!
- Being able to have Izzy in here more often, and occasionally even cuddles, has made a massive difference to my mood. She’s amazing and I love her 💜
- Another thing that has helped my improvement has been the Visible app and armband. I’ve had to tweak stuff to make it work better for me (compared to a healthy person, even on my best day symptoms like fatigue and muscle pain are severe) but that and the heart rate tracking have really helped me with my very modified version of pacing. I wish it were more affordable for those who need it.
- The last thing is we’ve bought a 3D printer. I was planning on getting it this weekend but Izzy talked me into getting it last night (Thursday 6th June). We’ve been talking about getting one for years, but with the decluttering Izzy’s been able to find room for it, and I’ve been able to save up enough. We’ve got so many ideas and plans!
As is usual for me, this is way longer than I thought it would be when I started it. No longer having the uncertainty around care, knowing what things use my energy most and being able to sleep when I need to have massively improved my quality of life. Decent care workers, like the ones I had in 2022-early 2024, do help me and especially Izzy, but inconsistent ones who won’t follow a written care plan make things actively worse. We’re doing good.
I’m so lucky to have my family, friends, and especially Izzy. I wouldn’t be here without her.