I was hoping to be more with it and awake today than I was yesterday (I’d not got much decent sleep as there was a dog whining for hours). Unfortunately that didn’t happen, and I spent most of the day asleep, missing the time I’d planned to go into Minecraft with Sammie and her friend 🙁 I did get on eventually, and we played a bit, but I’m annoyed I was asleep so much 😛
It also means I’m nowhere near to fixing my sleeping pattern. Nevermind 😛 I’m playing World of Warcraft at the moment where there’s loads of stuff for me to do. The problem is choosing what to do first 😛
I had an accident that required my bed to be changed, which made Johan very meowy. Luckily he was already awake, as if he’d been asleep he would have been even more grumpy. I’m very grateful I have a spare U-shaped pillow.
This cold is reminding me it’s still here. Feeling all bunged up and headachy today. I think the sitting up on the side of the bed is on hold until I’m a little bit better. I’m glad I’ve not relapsed though.
I’ve got a couple of books I want to read. If I’m able to stay awake after coming off computer tonight then I think I’ll start one of them. I wanted to read 50 books this year and I’ve only managed 32, so I’ve got a lot of catching up to do. I’m so glad I’m able to read now though 🙂
For some reason Java keeps crashing on my computer when I’m running Minecraft. Very annoying but I’m not with it enough to fix it today. Maybe tomorrow.
I’ve played Minecraft with Sammie today (when I could stay in) and then went into World of Warcraft for more levelling. The queues were much shorter today (about 20 minutes) and there was a lot less lag. Yay! I’ve managed to get to level 96 which isn’t bad going for me 🙂 Much of the guild are close to or level 100 now, which is awesome. Johan is the best geared in the guild, which is cool (though it’s only heroic level stuff so it’ll probably change when raiding starts).
I’m well enough for my computer (obviously) which I’m super happy about but touch and stuff is being really problematic. I want computer a bit more right now but if it continues for more than a few more days I’ll have to sort something out.
Got a letter from my consultant today. Mentioned I’d a previous positive ANA test (news to me) and now have probable POTS (not surprised). Also says fatigue of unknown origin, which is fair enough. I’ve been referred to Professor Julia Newton so hopefully she’ll be able to help (I know a lot of people who have asked to be referred to her so I’m feeling very lucky it has happened for me without having to ask, and that she’s not far away).
I’ve got a couple of blog drafts I want to finish, but all brain power currently going into computer gaming related stuff (or talking to very important people). I’m sure I’ll manage it at some point 🙂
I was not expecting as many people to see my previous blog post (either here or on Tumblr) as actually did. I now have about three times the followers on Tumblr as I did before it, which is kinda scary.
I’m working on communicating better with my main care worker. Some things are a bit better for it, others I still need to figure out. I’m not sure if I’ll be showing her the post or not (I want Johan’s opinion but he’s too meowy to give it at the moment). The main issue will be there though even if it gets better with one person.
How bad I communicate became even more obvious when I had a new care worker this week. She’s nice, but there’s something about her that makes me not want her to be near me and Johan not want her to be in the flat. Since she’s meant to be providing my personal care, that’s a problem. I’m going to have to ask the agency if they can send someone else instead (my main care worker now has Sunday’s off, which I’ve been telling her to get back for months now). If I can’t ask myself my main care worker has said she’ll speak to them for me. It would be easier if I knew exactly why I’m having trouble with her, but I don’t. She’s just not a good fit.
Yesterday I had penguins imprinted on my legs from my knee high penguin socks. I also had a really sore band where one of them had been digging in. I never used to have this problem with socks but I do now. Having penguins on my legs is cool but I don’t think it does them much good (and they’re itchy and a bit sore). I think I might need to look into some socks that are less tight, though as my legs are rather skinny (from disuse mostly) I don’t know how easy that’ll be. Ones without seams will at least prevent it digging in there.
I’ve been getting a bit frustrated by being stuck in bed. I’ve still not got back to where I was before I was in the care home, and I’m having to be careful about sitting up (though I do try to sit up at least once a day, in an attempt to convince my body that it’s not a bad thing). My nausea levels have been pretty bad and the cyclizine has been messing up my sleeping patterns. This doesn’t help with trying to plan my days, or even working out if there’s a better time for the care calls.
I finally got around to putting my medication in my pill box (one with separate boxes for each day of the week, and five slots in each for meds- four for regular medication and one for as needed). We’ve discovered that most days I don’t take all my medication because I’m not awake enough- I’ve set it so I take domperidone (to be taken before food three times a day) with the first three lots of tramadol, but some days I only have two. I also ended up basically skipping Friday because of an extra long sleep on Thursday. The good thing is it did let us know in good time that I needed more medication so Johan was able to order them before I ran out completely (due to the doctors being closed when he tried to order them the first time I would have run out Sunday evening if I’d taken every dose of tramadol, but by that point I had at least four extra doses so it was fine and he’ll pick them up today).
One thing I think I forgot to mention in the update post is I’ve finally been approved for the hoist! I’ll be getting a ceiling track hoist in both the bedroom and the living room, as well as a tilt in space shower chair. The hoist will be at least August before installation, and Johan has quite a bit of work to do in the living room beforehand, but he’ll get there. I am really excited by it as it would mean I could get out of bed even if I’m not well enough to transfer independently, which would be really good for me.
I’ve been playing a bit of Hearthstone, a bit of Minecraft, a bit of Long Live the Queen, and some games on my tablet like Ninja Chicken Multiplayer Race and Pocket Legends. No idea what I’m doing on the tablet games but they’re a good distraction. Also managed to read the second Young Wizards book today when it became obvious sleep wasn’t happening, and I liked it even better than the first. I want to read the third now but I have to be careful not to try and read too much at once as it’s so easy to overdo it (and one book every few days is enough for me right now).
I watched the World Cup final, supporting Germany (I’m quarter German). They deserved their win, but I got really worried by the amount of head injuries during the entire tournament. There were a lot of times where I thought they really shouldn’t have continued playing, as some of the players looked more out of it than I normally do (which is saying a lot). It was fun to watch though, and nice to support a team. Johan has been having fun watching it, and I’m trying to convince him to support Liverpool in the premier league (they’re my team because I’m a Scouser :P).
Had a few problems with people trying to break into my blog last night. It didn’t help that for some reason the security plugin had stopped working properly and wasn’t blocking those who were trying to brute force. Johan was clever though and managed to fix it. I found out about it because I was getting the emails for each attempt- I think there were over 25,000 by the end of it, including the 5,000 that Johan just deleted from the mail queue. It wasn’t fun but sorted now. I’m so glad Johan is able to do server stuff as my brain isn’t good enough to do more than the very basics now (I accidentally dropped a table instead of deleting a row in one in mysql a few days ago- I really need to install phpmyadmin so I don’t mix my commands up again!).
I should probably sleep soon as I’ve been awake since last night. I’m hoping everyone is as okay as they can be, and I’m just glad I’m well enough to do some stuff, even if I’d like to do more 🙂
I’m hoping to post the photos I took to go with this post at some point, but I’m not at home right now so will be when I’ve got more cognitive spoons to do so (I think I’ve got them online, somewhere) 🙂
Stuff has happened. Lots of stuff. Bullet point time!
Payback from seeing my brother only lasted a couple of days. It’s been a lot shorter in general recently.
I saw the CFS team. They are going to help me with learning safer transfers next time they visit (after I’ve seen Dr Spickett).
I sat up independently on the edge of the bed! It was amazing and my heart didn’t start doing funky dances until after I was lying down for 30 minutes. It’s strange.
A couple of days after that, I had no dizziness. Dizziness has been a constant of my illness since the beginning. So I sat up again. And was fine. Then I decided to try standing, and after a couple of failed attempts managed it while wearing my green high heeled boots (I can’t put my left foot flat on the floor with my leg straight) and my zimmer frame.
Since I was standing and pretty steady with the help of the zimmer frame, I tried walking. And managed three steps! They were little steps, but I did it! Afterwards I took one step backwards and collapsed on my bed, but I walked!
I didn’t get any payback from that, though my dizziness did come back and hasn’t gone away again since (oh well).
I went to the local polling station in my wheelchair and voted. We’d forgotten to apply for a postal vote for me and it was a good thing in the end. I wasn’t really well enough but I managed it and wasn’t too bad afterwards 🙂
Had visit from Sammie. I’ve been playing lots of Minecraft with her and talking on Skype with her but it was amazing to see her. We had a grown up discussion about something important she needed to talk about with me, then we had awesome mum and daughter time with lots of cuddles 🙂
Had care plan review with someone from the care agency. Really overdid it during it (I could tell as I was struggling to answer questions from about halfway through). Got payback from that 🙁
Johan had his care assessment finally. I did most of the talking as Johan can’t talk about himself. That was also too much but the payback (which was still happening from the last visit) only lasted a couple more days, luckily.
Sammie made me a purple penguin house in Minecraft, and herself an ice palace (inspired by Frozen) with a jaguar. She’s much better at building in Minecraft than me 🙂
Our upstairs neighbour’s brother broke into their flat. It was horrible. I spoke to the police when it happened (during the middle of the night) then gave a statement to the police the next day. There was also repairs done. The noise made me worse than I had been for weeks for a few days and scared us.
Johan went to see the cricket a few times. I think he enjoyed it.
I bought a couple of new shinies. A new SSD for my laptop and a Kindle paperwhite to read on. Yay!
I’m now in a care home for just over a week. Came in yesterday and will be going home next Friday. This is so Johan can go to see his friends and family. It’s mostly good (though I still don’t agree with care homes).
I had a bath! It was amazing! First bath since I moved house 😀 I feel properly clean. My hair also looks like hair, according to Johan 😛
Tomorrow Johan goes to Glasgow the Leeds. I’ll be keeping in touch with him via Google Hangouts and Sammie via Skype. It’ll be the longest we’ve been apart since he moved in but it’ll be good for him (and I can do more thanks to the hoist and a bath!).
I’ve done so much in the last few weeks and I’m really happy 😀 Johan’s assessment result said he has substantial care needs and his provisional personal budget is similar to mine, which he’s finding hard to come to terms with but he needs the help. Hopefully it’ll make our lives a bit easier, as we’re hoping to join our care packages together so we can both get the help we need.
Update post (so I don’t forget in a few weeks/months/years when I need to remember stuff :P)!
I played lots of Diablo 3. It is fun 🙂 I bought the Reaper of Souls expansion when it became obvious I was going to finish it 🙂 I have now finished the story (including expansion) and when I last played it I was level 56 on my wizard.
I’ve started playing Minecraft again, on the Autcraft servers. It’s nice to not have to worry about neurotypical social constructs, and though most of the players are younger than me they’re really cool.
I got obsessed with Classic Alice and even took part in a Hangout with the cast. That was fun but rather draining 🙂 I asked if they’d considered children’s books for future episodes, and now they are doing so 😀
Nutritionist came out to try and figure out my weight from my arm measurements. It looks like I’m no longer underweight. Yay! The Fortisips are working.
I managed to arrange Sammie’s Easter eggs for the first time in a few years. No feeling guilty when I find them under the bed 10 months later 😛
Good Friday was good. I had my hair washed. First hair wash of the year! Also had chish and fips for tea, which is a Danni tradition I like to keep 🙂
Easter Sunday I soaked the bed by catching the end of the Hydrant tube under me and pulling it off. Johan had not long been asleep and so was really groggy and really struggled to get me sorted. That was very much unfun.
Later on I watched the church service on the telly. That was good. There was Indian dancing during the prayers. Then my TiVo box rebooted so I couldn’t watch any more. That was not so good, but luckily the service had finished by then.
Got payback from the Hangout/hair wash/bed soak. Felt really ill for a couple of weeks. Even ended up throwing up which rarely happens now with the heavy duty anti emetics I’m on.
25th April was World Penguin Day. People sent lots of pictures of penguins for me and my waddle (apparently the agreed collective term on land- in the water they’re a raft). That made me happy 😀
30th April started feeling much stronger than normal. Watched UP. Got annoyed at the TiVo box restarting lots. Cried a bit. It was a good film 🙂 Later on had cuddles with Johan which made up for it 🙂 Started pestering Johan to let me go in wheelchair. He said see how I am in a couple of days because he was worried about payback from watching UP and cuddles. We also took my curtain down so I could see outside again 🙂
Yesterday was still feeling stronger, so had loads more cuddles with Johan. I also wrote the previous blog post (which was hard and emotional for me) and finished a 1024 piece jigsaw puzzle on my tablet that I’d started a few days earlier. The picture was of an Emperor penguin and it’s chick 🙂
Today to Johan’s surprise I was feeling even better than the last two days. I got dressed in the morning in a rainbow dress, pink penguin socks, rainbow headscarf and cream cardigan. I was plotting…
The new U shaped cushion I’d ordered for my bed arrived. I ordered it with a lilac cover this time. I’m keeping the old one (which is rather flat now) as a spare, and I’m just accepting I’ll need to get a new one every year or so.
I also received a tube director for my Hydrant. It’s a neoprene cover for the tube with a bendy wire in it so you can angle it where you need it. I’m hoping it’ll prevent any more bed soakings.
After the cushion arrived (yay for delivery tracking that lets you know when it’ll be coming to the hour!) it was time for my big adventure- going outside! Johan helped me get into the wheelchair (though I managed to get up to sitting by myself with the bed’s help) and once I was settled in it and the worst of the dizziness had passed he took me out. We went down the ramp and I saw a butterfly and then as I wasn’t feeling amazing with the movement we stayed halfway down the ramp and I watched the traffic for a while. It was amazing! The sun felt warm on my skin, the wind was cold and it smelt really fresh. I was still feeling not too bad when I came back in, as I didn’t want to push it. On the way back I was able to see a bird’s nest (I could see it from my window in bed but wasn’t sure if it was a nest or not). I can still open our flat door with my feet 😀 The transfer back into bed was harder than the transfer into my wheelchair and I felt rather nauseous for a bit. The way Johan dragged me onto the bed we ended up kinda tangled in each other and we converted it into more cuddles for a few minutes, then he sat in my wheelchair next to me so we could have handholds without him restricting where I could lie on the bed. I’ve had such a good day and I’m the happiest Purple Penguin 😀