An incomplete and out of order summary of what’s been going on the last few months.
- I had a shower! It was awesome. It still takes way too much out of me to be able to have one regularly.
- I went out to vote in the General Election. I like our Labour MP so I voted for him. He retained his seat (as expected as this is a very safe Labour seat).
- I had a birthday. Turned 31. Spoke to Sammie online and played with a light up balloon. Sammie made me an awesome animation and picture 🙂 Johan got me a skirt and a penguin book. I had lots of cards and also cake a few days later. I also had other presents which were much appreciated.
- I spent a lot of time resting. More than I’d normally do.
- Asked the district nurse to come out. Changed Derma S to Cavilon (Derma S was causing an itchy rash, which is what it’s meant to treat) and also asked about a different mattress as pain kept waking me up and I needed to roll over, which is difficult and exhausting. Got an alternating air mattress the next day. It makes a massive difference and now I can sleep for up to two hours before waking, compared to 45-60 minutes beforehand. I also don’t need to roll over as much.
- The reason for the resting – I went to see Sammie’s school play. Until I got the new mattress I wasn’t sure I’d be able to make it, but sleeping better and all the rest paid off and I managed to see it. Sammie had no idea I was there (she knew Johan was going) and her reaction when she saw me afterwards made it all worth it. The play itself was excellent and I got to meet a couple of her teachers. It was the first school event I’ve been able to attend so it was very special.
- Got a taxi to and from the school. Same driver both times (he stayed on shift late to bring me home). The journey went as well as it could, but when getting out near home my wheelchair went sideways off the ramp. Luckily the driver had a really good hold on my chair and it went down slowly enough that all I got was a slightly grazed hand. Johan and the driver picked me back up and I was fine. I’m not so sure about the driver though. He refused to let us pay even though it was an accident.
- Johan has gone to Sweden again. I’m in the same care home as last year. Johan pushed me this time rather than getting the bus as I wasn’t really well enough to travel (and the movement of the bus would have been too much) but has told me he’s not pushing me back. I got pretty much straight into bed and haven’t left it. I go home next Thursday.
- Unfortunately being in the care home hasn’t gone as well as last year. As I can’t use a buzzer (they make a horrendous noise and can make me nonverbal) I’m meant to be checked on hourly. This hasn’t always happened so I’ve ended up with a soaking bed multiple times. The worst was Tuesday night where no-one came in from about 10.30pm (when I got my medication) until after 3am when I asked someone on Twitter to phone for me. I also ended up having a meltdown on Monday as I got overwhelmed by everything. Some of the staff are really good though. I’m going to make a complaint when Johan gets back and see how they respond before deciding whether to ask to change care homes for respite.
- I’m really struggling with asking for things I need. Being in a care home makes this worse. I wish I could do everything myself.
- I bought a Go Pro during the Amazon Prime Day sale. Johan is planning to use it for his runs. I’ve also insisted he goes to Edinburgh Zoo on the way home from Sweden and film the penguins for me.
- I also bought a wifi plug socket for my bedroom in the sale. Being able to control my lights using my tablet is so awesome I ended up getting a second one (they only let you buy one in the sale for some reason). It also means Johan can control my lights if needed.
- I’m now struggling to manage Twitter as well as Facebook, and am struggling with games I normally find easy. I think it might be because of being in the care home. Hopefully it’ll get better once I’m home.
- I’ve had a couple of visits while here. One brought a crochet penguin his wife made for me. They’ve really helped me cope 🙂
- I’m hoping I’ll eventually be able to write blog posts that aren’t just bullet point brain dumps. I like writing them but my brain is being silly.
- Penguins are still awesome. The penguin cam stopped working for a bit but Johan is at the zoo on Monday so I’m hoping to see them then.