Hello Matilda

I’m still stuck in bed. Sitting up isn’t working, moving is difficult and most of my symptoms (apart from light sensitivity) are still really bad. Because of this, we moved my desktop computer (called Matilda) into my bedroom temporarily so that I have a decent machine to use.

I had been trying to use my laptop (Annika) but as she’s over 5 1/2 years old and a bit broken, it was rather frustrating and meant I couldn’t do as much as I wanted to. Playing games wasn’t working as the lag was making my motion sickness really bad. Reading stuff was easier on my tablet, and typing was an issue as the wireless keyboard I used with it was too lightweight so kept moving when on me and I couldn’t be propped up enough to use the laptop keyboard comfortably.

I know the most likely reason I’m not improving like I’d normally do. Our upstairs neighbours are still causing a lot of noise every other night which makes me more ill. I have managed to send an email to the housing officer but have yet to have a response. Writing that email made me feel terrible though, and it’s not the only communication thing I have to do (I can write blog posts as they’re just a brain dump- emails need to be properly written and that requires more brain power than I really have).

I have not seen my GP yet. Johan tried to phone her before Christmas but we never got a call back, and he’s been too anxious to try again. I really need to speak to her as the dietician prescribed supplements and I need stronger painkillers (we’ve had to resort to doubling my tramadol when it’s unbearable, as it’s less risky than going to hospital for morphine). I also really need to get my bladder issues sorted, as while I don’t mind wearing incontinence pads for now, I don’t want to need them for too long if I don’t need to. They have made a massive difference though, and I’m less sore than I was using the bedpan.

The care agency is still messing us around. I need to complain but I haven’t got the energy. What we need is support with communication and appointments- someone to help us with sorting paperwork (now I’m no longer well enough to do it), telephoning people, helping us write emails, making appointments, informing people of our needs (I have an ultrasound next month and they say to phone them if you might need help getting on the bed- we need to let them know that and that I’ve got a big wheelchair as the waiting room is really small). I asked and asked for help finding someone but we got nowhere, and now I’m too ill to do it. I knew this situation would occur but that doesn’t matter to anyone like social services.

We’ve had some good news. Scottish Power asked for our meter readings, and though it took Johan a while to actually get them (anxiety and forgetting) once we gave them they have reduced our direct debit as we’re well in credit and it was set too high. It was already quite a bit lower than at our old place so this flat must be better insulated and stuff. That’s an extra £25 a month which will come in handy. We’re also getting two cold weather payments as it’s been so cold (and I’ve had to ask Johan to turn the heating up as my nose was getting cold- indoors in bed). I’ve decided to use them for bedding as I’ve seen some awesome rainbow ones online that are the type I’ve been looking for for years, and since I spend so much time in bed it will help.

Having Matilda in here is helping me so much. We have my big monitor on my overbed table, my mouse on a pillow and book on the bed and my keyboard propped up on me with penguin pillow. I need to work out the best way to have the keyboard as my tummy gets a bit sore with it poking me in my tummy, but it’s loads better than the laptop. I managed to play a bit of World of Warcraft and SimCity Social earlier, which was made possible by it not being as jerky. It also means I can get on Facebook properly again, and I’ve loads of things to respond to from the last couple of months that I’ll try and get through in the next week or so. I’m hoping to start building up my ability to watch videos and things- probably start with short YouTube videos then go from there. I’m going to have to be careful not to overdo it, but it’s massively improved my mood.

I think the hypersomnia may be calming down a bit. My sleeping pattern is completely off again because of it (hence me writing this at twenty to six in the morning) but I’m trying not to worry too much about that. It will fix itself at some point. Right now I’m just sleeping when I need to sleep, and being awake when I can. I’m still not eating enough, but managed a couple of meals of actual food (rather than just yoghurt and milkshake) and though it’s exhausting and I can’t do it everyday yet I’m hoping to build that back up too. It’s frustrating as if we didn’t have the neighbours causing so much noise I’d probably be doing better like I was the last few times I relapsed. At least I’m not right at the bottom.

We’ve had snow. Lots of it. Johan went out a couple of times but I think he doesn’t want to go too far while it’s bad. I’ve been impressed by the Sainsbury’s delivery guy for not being that late despite getting stuck somewhere else (we got a phone call telling us he’d be late, something we were expecting anyway). I’ve seen photos and when it was snowing heavily one evening Johan pulled the blind up so I could watch it properly. That was awesome, as it was lit up by the street lamps so not too bright but it was beautiful falling.

Johan is not doing great, though it could be worse. His anxiety is really bad (which is why he can’t contact the GP or anyone else) and his brain has been mean to him at times. I wish it was as easy to fix as my bad night was- we fixed mine by giving me a double dose of tramadol as it was all pain related. He’s had a few projects though which I think have helped a bit. He’s built a media centre server out of spare parts we had laying around (he bought a new case and CPU cooler from the local computer shop but that was it). He managed to get his broken monitor working again. Since he brought my computer in here and I can only have one monitor for now, he’s borrowing my desk and my other monitor and now has a four monitor setup, and I think he’s plugged into the telly as well. Things like that seem to help, even if only for the short term.

Johan is going to London to see John and Hank Green (vlogbrothers) very soon. He’s planning on going to Leeds afterwards to see his parents as he’s not seen them for far too long. Vicky is coming to stay with me while he’s gone, which is good as she’s had some experience in personal care (including bathing me when I was severely depressed) and is not someone who makes me worse. My main issue is going to be remembering not to talk to her too much as it’s tiring and accidentally spending all night chatting has happened before.

Overall I’m not as bad as I could be, thanks to ear plugs, ear defenders, and Johan. I’m frustrated that any attempt to increase my pillows fails so getting out of bed isn’t going to happen for a bit (which means the ultrasound that’s meant to happen next month is probably going to be interesting, though I’m determined to make it if I can as I need my biliary system checking). If I’m careful I can play some games, read some blogs and children’s books, and sometimes eat solid food that needs chewing. I still can’t listen to music with lyrics or anything too complicated but I’m hoping that’ll improve soon. I have loads of TV programmes to catch up with when I’m able to watch them 🙂

My penguins keep me going. Johan plays with them for me when I’m not doing great and it helps a lot. Penelope is definitely the head of the family. Penguin still loves flying and trying to get his own way (and often failing). Poseidon wants to learn about everything, and has started using Twitter. Purple Penguin is just happy about everything, and often goes exploring (usually under the bed). Po and Purple Penguin went out with Johan and got to experience snow. Po decided it was too cold (he is a baby emperor penguin and they normally stay on daddy’s feet at his age, though as it’s warm in my flat he can explore more) and Purple Penguin thought it was brilliant. I am glad they went out in it even if I couldn’t.