"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
I think I’ve sorted how I want the blog to look, for now anyway. Eventually I want to have a header image, but until then I’m happy with how it looks now. I’ve updated a couple of the pages, changed the theme (the new one, Suffusion, is very customisable), updated my links and otherwise done some general housecleaning. If you think I’ve forgotten an important link, please let me know.
Otherwise, I am clean! Yesterday (Monday) morning Johan washed my hair and gave me a bed bath, then I got into a clean nightie. It has made me feel so much better and more human. I slept all day again (I need to fix my sleeping pattern but it’s not massively urgent yet) and when I woke up Johan brushed my hair for me so it’s all nice and smooth. Since then I’ve been working on getting my blog sorted.
Still not really well enough to get out of bed, but I’m sitting up in it a bit more now. For the rest of the night (until I fall asleep) I’ll probably be on twitter and reading blogs. I read a lot more blogs than those in my links (I have over 100 on my reader) so that’ll keep me entertained. If I run out of blog posts to catch up on, I have 27 links in my Read It Later/Pocket thing so they will keep me going. In the worst case scenario, there’s always TV Tropes 😛
Tomorrow I plan to have sausages (cider and apple) and Thai rice for tea (I likes them :P). Having a meal planned out before we’ve even slept yet is very unusual, but the sausages are in the freezer so need defrosting first (well were- Johan’s put them in the fridge now).
I bought a new tube for my Hydrant when I got my wheelchair cushion, and it’s got a different type of valve to it. Took us ages to figure out how to use it, but now we have I like it because it locks so doesn’t leak. Means Katie won’t have juice all over her in the middle of the night again 😛
Johan was very productive while I was asleep. Posted a parcel, bought some snacks from the cheap shop, went into Newcastle and spoke to the bank, and still managed to fit in playing some Eve 😛 Since I woke up he’s been chatting to me (and brushing my hair as mentioned earlier), watched some Torchwood, sorted me out (painkillers, food, drink, commode) and now is off to bed as he’s been up too long. He seems happier than he was so that makes me happy 🙂
I’ve been out a few times in the last three weeks, and I’ve been further each time. On Monday I went into Gateshead to change my address with the bank, and also looked around the shops and bought a few items, including some long stripey socks 🙂 On Wednesday I was feeling really well for me (no payback!) so we went into Newcastle, looked around some shops (hunting for some Pony hair accessories, but we went into the wrong H&M and the right one was closed a couple of hours early) and then went to get some food at TGI Fridays in the Gate. It was brilliant, especially since I got to go on the Metro on the way home and see all the bridges lit up 😀
In my last post (if you could understand it :P) I complained that I couldn’t sit upright as I was too floppy, but otherwise was well enough to do stuff. We discovered that if we tied me upright in my wheelchair, I could go out 🙂 The first time we used a scarf, then when that worked we bought a proper torso harness which does an even better job. Because I no longer have to put all my energy into remaining upright, being outside, travelling and stuff is doable.
I’m loving how much I’ve improved in the last few weeks. I can go on my computer for as long as I want (was 7 hours yesterday, which may have been a bit too long as my bottom was very sore by the end of it :P).I can cope with noise and light even better than Johan a lot of the time. I’ve been able to reduce my painkillers as pain is mostly at a bearable level now and I can use distractions such as computer games to deal with it. I’ve gotten out of bed every day for a few weeks now I think. I can watch some television.
There are a couple of things that are frustrating me though. The first is that cognitively, I’m still not doing great. Conversations, reading lots of text, remembering things, concentrating on stuff- all are now more difficult than going outside. I got frustrated while in Newcastle because I wasn’t able to direct Johan where I wanted to go. The CFS clinic people came out a week and a bit ago, and the half hour conversation (with me lying in bed) absolutely exhausted me, and I got payback from it. Johan talks to me but half the time I don’t know what about, or don’t hear him because I wasn’t able to concentrate on what he said. I can’t keep up with Facebook and even struggle with Twitter. It’s frustrating as I feel like I’m not aware of what is going on because it requires more brain power than I seem to have. I even suck at playing World of Warcraft, and other people are noticing that I’m making stupid mistakes or losing concentration.
The second is that I still can’t care for myself. My hands are stupid- I can’t reliably hold things as they either cramp and spasm or they just drop things. This means I can’t wash myself, get dressed by myself, use cutlery properly, hold a cup most of the time, write, or do anything else that requires the ability to hold things reliably. I’m also really weak so repetitive movements such as those required to feed myself (holding things in my hands is easier than cutlery, though I still drop stuff) exhausts me to the point where Johan still has to take over at times. There’s a part of me that’s saying what’s the point in being able to go out if I can’t even look after myself.
Earlier I was on the computer playing World of Warcraft, doing Raid Finder with some guildies. Johan went to the shop to get some fish and chips (compulsory on Good Friday) and I was eating them when suddenly my body decided it had enough and I almost fainted. Johan got me on the sofa and I spent about 15 minutes struggling to stay conscious while my body jerked and spasmed, then it stopped and I was “okay” again, apart from being extra tired. It was as if it was saying no to sitting upright (not wearing the harness as the seat reclines and that’s normally enough for me), eating and concentrating at the same time. We initially thought it might be payback from Wednesday but as I recovered so quickly that didn’t seem to be the case. Was odd, but it’s not the first time my body has suddenly protested like that.
I want to read and comment on blogs more but that’s too much for my brain. In the meantime, this is the song I’ve been listening to lots (which is the inspiration for the post title) 🙂
I’m still improving physically. Sitting in my computer chair is no longer a problem, and I can manage it for several hours without getting any worse. The only problem is movement makes me very ill, so if I try and go in my wheelchair to the bathroom I start feeling really dizzy and sick. As the bathroom is quite a distance away by wheelchair thanks to how big our rooms are, I’m using the commode for now. This also has the advantage of me being able to use it when I want without asking, as I can transfer by myself again 😀 (Johan says emptying it isn’t any more difficult than pushing me into the bathroom, so he doesn’t mind).
Cognitively I’m not doing too brilliant. There’s been a slight improvement, but writing emails is beyond me, as is understanding Facebook. I am however managing to play quite a bit of World of Warcraft, and since I’ve not been on for ages I have lots to catch up with. This week the Darkmoon Faire is on, and they’ve changed it since the last time I was there (the changes were in place last month, but I was too ill to see it then). It now has its own island, lots of games and quests, and I’ve been having a lot of fun with it 🙂 My favourite game is the ring toss, as I never need more than one token for that 😛 Also available there are replicas of some of the sets no longer available, including the Devout set I want for Danni, my priest. I’ve managed to get enough prize tickets for the robe, and have done some transmogrification of other items to match it while waiting to get the other items in the set. I may keep the witch’s hat though, as I like that 😛
I’ve also been doing quite a lot of heroic dungeons on Danni, as the new ones are very short and easy, and (as I said to one of my groups) it doesn’t matter that I’m now rubbish at healing because no-one dies anyway 😛 I’ve also ran a bit of Raid Finder, which is interesting but requires more concentration. I am definitely a lot worse at healing than I used to be, and was normally one of the bottom healers, but it was fun and no-one yelled at me, which was good.
Since I’m now able to sit up and do more, I’m going to start making lists of things I want to do. I have television programmes I want to catch up on, lots of things in World of Warcraft I want to do, and films I want to watch. I also have blog posts I want to write, but my concentration isn’t there for them. I’ve got a couple of them in draft form that I’ve started, so I may have a look after this to see if I can finish one of them. I’ve also still got two emails to write, so maybe they should come first. I phoned Sammie on Monday and that went well, so I’m hoping to phone her every weekend to see how she is and things. I’m going to buy a stereo Bluetooth headset for this as I’m finding it hard to hear her a lot of the time and being able to hear with both ears may make it easier.
I’m not sure how I’d describe my M.E. right now. It’s nowhere near as severe as it was, but I’m still housebound and mostly stuck in one room, especially since moving makes me feel so ill. I only manage to get on my computer as it’s very close to the bottom of my bed, and I can go straight from the bed onto my computer chair. Once I’m in my computer chair I’m reluctant to get out of it again as the moving between chair and bed also makes me very dizzy and nauseous, though it eases off quickly once I’ve stopped moving. I’m able to eat okay, and even manage a spoon sometimes 😀 Being able to sit up though (even in my reclining computer chair) is brilliant, and playing games online (both World of Warcraft and The Sims Social) is a brilliant distraction from the pain and how ill I feel.
I’m also very happy at the moment. Some of this is being really grateful for what I’m able to do now, and for any improvement. Me being happy is also helping Johan’s mood, which is great. I still have the occasional meltdown, but that’s mostly due to sensory overload and is over quickly. Most of my penguins are now sitting on the sofa, as my single bed isn’t big enough for them all and I can see them from my bed there. Tomorrow bidding opens again for more council houses, and we should get somewhere soon. Our urgent priority is for two bedroom bungalows or ground floor flats, with step-free access and a level access shower. We’re not too fussy on where we move to so long as there are decent bus links, but ideally I want to be along Durham Road or close to there because it’ll be so easy to get to Gateshead and there are normally a lot of shops and facilities. The two bungalows I bidded on over Christmas were both in Birtley, which would be awesome (I also bidded on a three bedroom house in Blaydon, but we won’t get that even though it’s adapted- it was the most suitable of the other choices though).
Somehow this outpouring of thoughts has gotten very long. How come I can type really long blog posts in not very long (about 15 minutes on this one) but not short emails or blog posts on important subjects? I don’t know 😛
I want to blog. I have lots of subjects I want to blog about, and even a couple of drafts. My brain its not cooperating with me though so it’s hard for me to write.
I enjoyed Christmas. I’m mostly over the relapse that made me very ill, and back to my “normal” level of functioning. I’m completely nocturnal at the moment, but that’s okay as I have no real need to be awake during the day. I’m sleeping when I’m sleepy, eating when I’m hungry (including lots of chocolate, but it is Christmas), sitting at my computer when I feel up to it and generally listening to my body. I’m also happy.
Facebook is feeling too much for me at the moment. I’m playing a bit of The Sims Social, but trying to keep up with my friend’s statuses is just confusing me. I’m managing Twitter better though, so if you like you can follow me on there @Dannilion.
I know I’ve said this lots recently, but thank you to my friends for being there for me. I really do appreciate it. Thank you also to Johan, who has been doing a remarkable job of looking after me, both during and after this relapse.
Today has been a World of Warcraft day. I have spent far too much time sitting at my computer playing that game. The reason for this is today patch 4.3 – Hour of Twilight was released. To people who now have no clue what I’m talking about, this means there’s lots of new stuff to do in the game that there wasn’t yesterday.
The first thing I did was get Danni sorted with some nice gear. I decided that until I get around to farming a proper pretty set of armour, I was going to wear Black Mageweave (I am a tailor so made it myself), which is less pretty and more sexy. Up to now I’ve not seen anyone else wearing it, so that is good.
I then started dumping most of my old gear from my bank into void storage. And got angry because some of the items weren’t allowed in, for vague reasons. Like my Ashen Verdict ring that I kept from Ice Crown Citadel. I managed to dump quite a bit in there though, and that meant I could dump stuff from my bags into my bank, so now I can actually use my bags again. This is good.
After a long rest, I went back on to do the new 5 man dungeons. We got a mostly guild group together, and had a pug mage from a different realm who was awesome and gave me cookies. The new dungeons were a bit challenging but not too hard, and were tons of fun. I did sit up for too long so I could complete them all (we had a few wipes while learning what to do and with me occasionally failing) but it was worth it. The individual dungeons are short enough that if I’m having a good day I should be able to run them, so that’s awesome.
There’s also a new raid, but I’m not geared enough or well enough to try that yet. Maybe when I improve a bit.
Johan went out today to the MetroCentre. Apparently it was packed. This may have had something to do with a strike that was going on, that meant most of the schools were closed, among other places. He didn’t really buy anything that I saw, but did use his mobile phone to buy a McDonalds on the way home, paid for by Google. That was cool, though I want a McDonalds and can’t have one because the bus drivers won’t let Johan carry one on for me 🙁
I am now hungry. I have to wait for Johan to complete a dungeon before he can even start cooking. This means I’ll have to stay up late. I’m not particularly happy about this. At least I can watch Penguins in the meantime.
