First of all, I’ve recently started reading another ME blog, Documenting M.E. Brooke wrote a blog post about living in bed that I found really helpful, including telling me about an Android AAC app that does pretty much everything I need to do so I don’t need to get an iPad now. The blog post is Tips on truly living from bed (the Android app is Speech Assistant AAC). The blog post is really good so I recommend you go read it 🙂
So, stuff has happened. Things have not exactly gone entirely to plan. Becca got some sort of viral infection and wasn’t able to stay to go to Comic Con. It looked like she’d be well enough to look after me while Johan went to Leeds, but then she tripped over the cat and fell down the stairs. Ouch. She’s doing better now but she had a massive bruise on her hip and it hurt her to move, so looking after me wasn’t going to happen.
Unfortunately I was too ill to go into the care home, so we managed to get some agency carers to stay with me on Thursday so Johan could still go see the ballet with Vicky. It meant he couldn’t see his parents though so we need to sort that out soon. I got lucky with the carers considering how short notice it was – had my normal morning call, a lunch call (that ended up being just after 11am as the carer couldn’t fit me in otherwise, but I went back to sleep so it worked well in the end) then my normal carer as a sit in from 1.30-7pm.
Partway through the afternoon I started having terrible stabbing pains in my right back when urinating. As I was calling out in pain the carer came to check on me, and we decided to phone the doctor. One of the GPs came out within an hour, and with my symptoms and history guessed it was an infection and prescribed the antibiotics that worked last time. The carer went to the pharmacy for me to get them so Johan didn’t have to worry when he got back. Johan’s train was delayed, and the carer insisted she was okay to stay until he got back. He said he enjoyed the ballet, though it moved a bit too fast. Vicky had an exam the next morning so would be arriving the next day.
Friday morning I felt terrible. Hot, sweaty, and generally bleh. That and the pain had spread to most of my urinary system. Definitely felt like an infection. I was glad I’d started the antibiotics the night before so it wouldn’t be too long. Ibuprofen brought my temperature back down and that helped a bit. Vicky arrived that day but I was asleep for most of it so didn’t really see her. Saturday morning I felt better until I took the antibiotics that morning. The fortisip I’d drank had made me a bit nauseous (the antibiotics had to be taken after food) and adding the antibiotic on top made it loads worse. I kept it down as long as I could but it got too much after about half an hour. I hoped it was long enough and took some antiemetics to try and get it under control. As they put me to sleep I didn’t see much of Vicky that evening either, as I woke up just before she had to sleep.
Sunday morning I was awake before Vicky left to go to church and go home. I saw her for a little bit which was good 🙂 I felt a bit guilty that I’d slept through most of her visit but it couldn’t be helped. She’s going off to Palestine and Israel for a year for her PhD so it will be a while until I see her again. I am going to miss her but I hope she gets a lot out of it. Next time, I hope I can go see the ballet with her and Johan 🙂 My antibiotics were only a three day course as we started it so early (a couple of hours after the first symptoms showed) and they seemed to have done the job by the time I’d finished. I’m a little achy when peeing now but that happened after the last infection and disappeared after a few days.
Other things that happened were seeing my normal GP (before the kidney infection) and she tried me on metoclopramide, which made me very agitated and feel wrong. Not being able to stop moving when moving causes my ME to get worse is a definite bad thing. I stopped them and she prescribed me domperidone to take instead. I postponed them initially until after Johan had gone to Leeds in case of side effects, and then because I wanted to get the kidney infection out of the way so I’d know what effect they were having better. I took one dose yesterday and so far today (I’m starting them slowly after what happened with the metoclopramide) and it has made me even more dopey and weird feeling than normal, and a bit hungry, but otherwise it wasn’t too bad. I have to take them 60-90 minutes before food which will be interesting.
CFS team came out today. Went about as well as it could. They’re gonna come back in two months and in the meantime I’m to keep going with what I’m doing (basically a few stretches to prevent my legs from being unable to straighten and trying to sit up as much as I can without payback) and try and get social services to sort out the hoist. Johan also gave me a wash and helped me put my rainbow dress on as I wanted something different to my normal pyjamas today 🙂
I have upgraded my desktop computer Matilda to Windows 8.1 Pro. I have Windows 8 on my laptop, but as I don’t use that at the moment I’ve missed some of the improvements that are in the new version of Windows. I’m not amazingly keen on the Metro interface, but I renewed my subscription to Object Desktop by Stardock so after downloading Start 8, Decor8, ModernMix and a few other little programs it’s now a perfect mix between the advantages of the newer OS (it runs a bit faster, has a much better task manager and some of the Metro apps are good) and having the start menu and running all programs on the desktop from Windows 7. I also have Pikachu as my Start button which made Johan facepalm but I like him 🙂 I still couldn’t find a twitter app that does what I want so I installed BlueStacks so I could run Android with Plume. It runs loads better than it used to and if I could use the mouse scroll wheel with Android it would be perfect (it kinda works, but it scrolls slightly more than one page at a time so it’s not exactly practical). A touchscreen would be nice as well, but using it with a keyboard and mouse works fine with the added programs.
My friends are awesome. Seeing Vicky was another reminder that I have the most awesome friends. When I improve and start getting out again I hope to see some more of my friends in real life, but I’m glad I can see what they’re up to using social media while I’m stuck in bed. I am worried that Johan doesn’t get to see his friends often enough. I’m hoping to persuade him to try the local tabletop gaming club (one exists in Newcastle), maybe on International Tabletop Day (5th April). He’s not sure but I think he’ll enjoy it and if he doesn’t, he can leave. Being able to go and do something not related to looking after me would be good for him, and yet it’s close enough that in an emergency he could get home quickly. Using the care agency for sit ins regularly isn’t really an option (last week’s will be about £70 for a few hours) and most of his friends don’t live locally, so I’m hoping he’ll make some in the area or at least enjoy playing games. I’m also hoping he’ll be a
It makes me sad when my friends aren’t well. As a lot of them have various chronic illnesses, I normally consider it relatively (though obviously I wish they weren’t ill at all). A few of them are struggling (physically, mentally or emotionally) and I wish I could just make them feel better. Sometimes I feel helpless when I’m unable to chat to them or do anything that might make them feel better. My friends have done so much to make me feel like I’m wanted and worth caring for and I want my friends to know they’re awesome and I love them, even if I’m not always able to show it. I love them and I want them to be happy, no matter what happens.