I really like this photo of myself. Yesterday (Tuesday) I finally wore my wig, and I love it. I also got dressed and had my hair washed (took wig off for that). Had the best day I’d had in months so very happy. Bullet points for easiness.
Still not spending much time on Twitter or Facebook. They are overwhelming. That is frustrating.
Spending lots and lots of time in World of Warcraft. Brilliant distraction.
Tiarna (my Gnome Mage) is now level 90. I now have two characters at level cap.
I saw the CFS team again. They are going to continue visiting me at home as long as I find it helpful. That is reassuring.
I need to see the GP again about stuff. Still getting kidney pain even though I’d been on antibiotics for the infection.
I have NHS incontinence pads/adult nappies now. First got sent the small which are tiny. Now have the medium which are too big but usable. Gateshead use Molicare, which are actually decent.
Still no sign of the OT. I wanna get out of bed!
Social services sent out a not-social worker to do my care review. Not-social worker quickly realised we need a full care review, not a quick “everything’s fine, sign here” as he was expecting. He said he’s going to yell at people for us. Made it clear we’re not coping.
Fortijuice seemed to help at first when mixed with lemonade, but then they made nausea really really bad. Need to contact dietician as I’m meant to be having three a day.
Eating has improved a bit, and I’ve gained some weight back, but food digestion seems broken. I’m bringing up food I ate over 12 hours later. And it’s still identifiable. And not nice at all. It’s also causing constipation.
My emotions have been all over the place for no apparent reason, though my mood overall has been good. Feels weird and frustrating, but it’s probably an M.E. thing.
My anxiety is still really bad. Still having panic attacks over things like the doorbell. Need to speak to GP about it as I have a solution (small quantities of benzos) but need to see if she’ll agree.
Am in ESA Support Group. That is a relief. Didn’t need a work capability assessment or anything.
Currently have Vicky and a new friend, Duck, staying over. This is nice. Duck is from Israel and is a big geek (and autistic).
Johan bought a bike. Then discovered he can’t ride up hills. We live in a very hilly area, halfway up a steep hill. We’re trying to figure out a solution.
The 24 hour Tesco has reopened. Johan can go there when it’s quiet (so late at night).
I need to catch up on Ponies and Doctor Who. Just need to have the right type of brainpower. I’m getting there though 🙂
I have a grade 1 (least serious) bedsore on my bum. Need to keep an eye on it as I don’t want the skin breaking. It hurts (and has done for a couple of days). I really need a profiling bed.
I think I’m finally accepting that I’m severely disabled. Still don’t feel it though. Just means I now get surprised when people do things that are easy for those who aren’t severely physically disabled to do that I struggle with or can’t do at all.
Dairy Milk Marvellous Creations Jelly Popping Candy Shells is the best chocolate. And seems really hard to get around here.
I’ve probably missed loads of stuff. Still not great at the whole communication thing but a little better than I was. I want to blog more so I’m hoping this improvement lasts so I’ll have the spoons to do it. We’ll see 🙂
I started doing this two years ago, and think I’ll continue 🙂
1. What did you do in 2012 that you’d never done before?
Met some awesome friends for the first time (and hopefully not the last) 😀 (I’ve met friends before, but these specific ones only in 2012.)
2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I kept one of them. I was happy most of the time 🙂 I’ve made new ones that are internet organisation based 🙂
3. Did anyone close to you give birth?
4. Did anyone close to you die?
5. What countries did you visit?
I didn’t go very far this year. I don’t think I even changed county 😛
6. What would you like to have in 2013 that you lacked in 2012?
I’d like to start getting better. Overall I got worse again.
7. What dates from 2012 will remain etched upon your memory, and why?
Due to my brain fog, I’ll remember some events (especially moving house) but I can’t remember the dates 😛
8. What was your biggest achievement of the year?
Going to the Interface prom. It was the furthest I was able to travel all year, and it was brilliant even though we had to leave early.
9. What was your biggest failure?
Sitting up. I faint if I try, which is highly annoying 😛 I also could have done better at keeping in contact with people.
10. Did you suffer illness or injury?
My health got a lot worse. I spent nearly the entire year in bed. Getting a tilt in space wheelchair did mean I could go out a bit until I relapsed in September though. I ended up in hospital due to the pain and not being able to swallow of the September relapse, where I discovered hospital is not the best place to be if you have severe noise and light sensitivities and are non-verbal. I’m now trying to avoid it 😛
11. What was the best thing someone bought you?
That is so hard. I’ve had penguins galore, penguin thermal socks (awesome now my feet don’t know how to stay warm), a purple sparkly penguin for my birthday. I’ve had so many awesome gifts I can’t pick just one, so all of them 🙂
12. Whose behaviour merited celebration?
Johan managed to look after me even as my health deteriorated. My friends for being awesome and helping me despite most of them being ill themselves.
13. Whose behaviour made you appalled and/or depressed?
The Government. Labour haven’t been great either. The press that have been making out disabled people are all scroungers.
14. Where did most of your money go?
Bills and disability stuff.
15. What did you get really, really, really excited about?
PENGUINS!!!!!! I got not quite as excited but still really really excited about My Little Pony: Friendship is Magic!
16. What songs will always remind of 2012?
Gangnam Style by PSY
17. Compared to this time last year, are you:
a) happier or sadder?
b) fatter or skinnier?
Skinnier. I wanted to stay the same but didn’t. I’m now underweight *curses body*
c) richer or poorer?
About the same really.
18. What do you wish you’d done more of?
I wish I’d been able to get out of bed more. It was my ME that prevented it though.
19. What do you wish you’d done less of?
Fainting 😛 Being so ill in general.
20. How do you plan to spend Christmas?
I spent Christmas in bed, opened my awesome presents, and played Monopoly and had takeaway pizza for tea. Was too ill to watch Doctor Who this year though.
21. Did you fall in love in 2012?
Nope, but I’m still madly in love with Johan 🙂
22. How many one night stands?
23. What was your favourite TV programme?
Doctor Who and My Little Pony: Friendship is Magic 😀
24. Do you hate anyone now that you didn’t hate this time last year?
My feelings towards the government are getting closer to hatred.
25. What was the best book you read?
The Fault in Our Stars by John Green. I also loved Realand by Dee Kirkby, and can’t wait to read the rest of the Portal series 🙂
26. What was your greatest musical discovery?
27. What did you want and get?
A new wheelchair that enabled me to go out more than I would have otherwise. Penguin thermal socks 😛 Penguin shoes!
28. What did you want and not get?
To get better. I got worse again. Naughty body.
29. What was your favourite film of this year?
I’ve not seen any films this year. I’m hoping I’ll improve enough to watch them again soon 🙂
30. What did you do on your birthday?
Had a friend come over and chat and play Draw Something on my bed. It was awesome 🙂
31. What one thing would have made your year immeasurably more satisfying?
Being well enough to see more friends and my family. I was mostly happy though 🙂
32. How would you describe your personal fashion concept in 2012?
Pyjamas were the definite main feature. Also got a penguin onesie 😀
33. What kept you sane?
Chocolate, penguins and Twitter (Same as last year then :P)
34. Which celebrity/public figure did you fancy the most?
Not really fancied any celebrities this year. Do get a little fangirlish when people I admire talk to me on Twitter (normally mildly well known people, like Bendygirl, Suey2y, or Ember Isolte)
35. What political issue stirred you the most?
The rubbishment of PIP. Argh!
36. Who do you miss?
Sammie. I miss her so so much. I’m hoping to be able to contact her again properly when I improve a little.
37. Who was the best new person you met?
I’m sticking with in person here, and I’m gonna say Persephone River. She stayed with us for a few weeks (as did Sanabitur Anima Mea initially) and it was awesome!
38. What was the best thing you ate?
Probably macaroni cheese. I had been craving it for ages so getting it was so so nice 🙂 It wasn’t even the best macaroni cheese in the world 😛
39. Tell us a valuable life lesson you learned in 2012?
Penguins make everything better.
40. Quote a song lyric that sums up your year:
I’m not well enough to even listen to songs at the moment, so I’m going to replace this answer with a picture of a penguin.
I’m still not doing great. Still bedbound, still can’t be propped up, still ridiculously light and noise sensitive, needing sunglasses to use tablet and feeling incredibly ill if the lamp is turned on for more than a few seconds. Speech still hasn’t come back, making this the longest period of being non verbal that I can remember (before ME it usually lasted a few minutes to a few hours at most, and the more than a few minute episodes were extremely rare). Hardest is not being able to cope with Johan in the room with me for very long. I talk to him using Google Talk but even hand holds are limited.
It could be worse though. I can chew so can eat solid foods, and roll over independently. Both are exhausting so I have to be careful, but it means I can eat what I want within reason and adjust my own position when uncomfortable. And I can use my tablet, which means I’m able to communicate and have something to do, though I have to be careful with it as well as it’s so easy to overdo it.
Since I last blogged, I’ve been playing around with my tablet quite a bit. First of all I changed roms, from an Ice Cream Sandwich (4.0) one to a Jelly Bean (4.1) one. I think the last one was either Cyanogen Mod 10 or based on it, while this one is called Eos. The last time I tried upgrading to Jelly Bean I quickly reverted back due to the amount of bugs, but this time I’m very happy. It supports the same theme manager as Cyanogen Mod so I can use the same purple and black theme I had before (trying to find themes for tablets is frustrating) but to my delight this rom also allows me to change the status bar at the bottom from black to purple, something I’ve been wanting to do since I first got my tablet.
I’m liking Jelly Bean a lot. The more detailed notifications are awesome, and I’m still finding little improvements while playing with it. Some of them might be the rom rather than Jelly Bean itself, but still I’m enjoying it. I’m still getting occasional reboots and touchscreen issues, but I think those are more to do with how many times the tablet has been dropped than anything software related. I have insurance for accidental damage but it requires a phone call, changing all my details as I’ve moved and living without my tablet for a bit. I’m waiting until I’m out of this relapse before sending it for repair.
As well as updating my rom (well, Johan did the actual changing, I just did the backups, restoring and setting up) I’ve been playing around with apps on my tablet. First of all I got the My Little Pony game (also available on iOS). I was really enjoying it when I decided to change roms, and was even considering putting some real money into the game for some extras. I backed it up carefully, restored it back on the new rom and discovered it had reset the game, as the saves see based on the device ID. Gone were any thoughts of paying real money into the game, and I was considering just leaving it (it’s a clicking game like Farmville and similar on Facebook) when I discovered on Reddit it was possible to cheat and get lots of gems (the premium, pay for currency). Since gems would let me quickly catch up to where I was, and I had been enjoying the story even though the game wiping was bad and Gameloft massively overcharge for things bought with real money (it’s possible to get gems while playing, but it’s very slow and to get all the Mane 6 ponies would take 2 years, and a lot longer to complete the game’s storyline without paying) I decided to cheat. And it was fun and a great, very low spoon using distraction (not much movement, simple gameplay and very little thinking required).
I also swapped my main browser from ICS Browser+ to Chrome. There are some things that I preferred in ICS Browser+ and it was a bit faster loading most webpages, but Chrome helps by being more compatible with the sites I like to use, including my online banking one (I can actually log in now). Overall it’s a positive change, though if anyone knows how to access the history in Chrome for Android, please let me know. (Edit: found it. You type Chrome:history into the address bar and it’ll show it. I’ve now bookmarked it so I don’t lose it again.) I do like being able to access the websites I was using on my desktop and laptop very easily.
Today I decided to swap keyboards. I’d bought SlideIT for 10p last year, and since then I used it as my main keyboard. It is very pretty but unfortunately it no longer works as well as it did. Recent updates have made it pretty much unusable. My hands are very jerky at the moment and while previously it had been able to guess what I meant to type, recently it has been way out. On top of that, one of the recent updates broke the dictionary so it was no longer recognising common words. It could be fixed temporarily by resetting the dictionary but that meant losing all my custom words. It’s frustrating as I’d really liked it, and the themes are very pretty (there are several purple ones, plus Christmas ones and others I liked, and a theme editor) but as I use my tablet for communication when I can’t speak I need a reliable keyboard.
I’ve swapped back to Swype. It’s still in beta and has to be downloaded from the website, but for my use it’s much more accurate and has much better word prediction. This entire blog post has been written with it, and as I’m not having to correct every other word it’s a lot faster and easier. It’s ugly compared to SlideIT- the prettiest theme is a light one with magenta highlighting and trace pattern, which is still kinda ugly, but it is so much easier to use. I’m still making a few mistakes as I’m used to SlideIT and it has different quirks, but I’m sure I’ll get used to it. I’m still annoyed that SlideIT has gone so downhill though.
On a more minor note, WordPress has released version 3.5 and I’m liking it. They’ve improved the dashboard for use with touchscreens, and it is so much better for it. I’d previously only been able to blog on my tablet in Chrome using the full screen mode as once I’d written more than the normal sized text box could hold it would start playing up, but that’s fixed now. Accessing menus is a lot easier, and I even found a tick box for snow built in 🙂 I’ve not even tried the new media upload section, which has apparently been completely revamped, but I’ll be trying that soon as I’m wanting to upload a photo later in my blog post.
I love technology. I’m so lucky to live in an age where I can stay in contact with the world from bed, while so ill. My tablet keeps me sane, and means I’m able to communicate and do what I can despite being very ill. I can read books (I read an awesome one called Realand the other day- I’m buying it for Sammie as it’s excellent and as it’s a children’s book was good for broken brains), I can talk to Johan and on Twitter, I can look at pictures of penguins and other stuff, I can do my Christmas shopping and help Johan with the finances.
There are times when I can’t use my tablet. Sometimes I’m paralysed or unable to move enough, or I’m too light sensitive to even look at the screen with my sunglasses on. For that reason we’ve started putting together a communication book for me that I can use when that’s the case. If I’m unable to look at it and indicate what I’m wanting to say myself, then Johan or someone else can read it out to me and I can indicate the correct response however I’m able. That might be through squeezing a hand, gesturing, blinking, or if I’m completely paralysed by breathing heavily. Our system is one for yes, two for no, three for I don’t know/maybe, four for something else. We’ll be including the instructions in it so if I’m I’m hospital or a care home again I’ll still be able to communicate. I got the idea from Mog’s talking book from Behind the Child. It’s a low tech solution but anything that enables communication is good. Johan is also trying to turn it into an Android app so that he has it always on his phone (in case we don’t have the paper version when we need it) but also so I can use it on my tablet when my cognitive abilities are too poor to manage typing, which also happens more frequently than is helpful.
If my speech doesn’t come back soon, or continues to be unreliable, I think we’ll be asking for a referral to a speech and language therapist. Our communication book will be good in the meantime though. I’m hoping they’ll be able to help me discover the best form of AAC for me, rather than me just guessing and cobbling together my own solutions (though I’m definitely grateful I can do that with Johan’s help). We also saw the dietician and she’s prescribing me some supplements as my food intake is so poor and my ability to manage solid food is unreliable. She’s also wanting to have the carers help with food preparation as some of the reason I’ve been eating so poorly the last year is Johan not always being able to feed me when I’m able to eat, due to his own disability and because of my sleep reversal. We’d been thinking about that anyway, so we’ll need to figure out how to ask social services for it. We need support to access support, which is kinda an issue.
Unfortunately things haven’t been going brilliant for me. Last week my gorgeous cat Giles was put to sleep. Vicky and I had adopted him when we were living together, and though he’d stayed with Vicky rather than me (I was uncertain whether I’d be able to look after him properly and Johan has a very severe cat allergy and values breathing) I still loved him very much. He was an older cat when we got him, FIV positive so needed to be an indoor cat, but he was the right choice for us. He was a rather laid back cat, but he adored food, often finding ways to get extra feedings, including from our next door neighbours at times. He also wanted our human food, especially pizza. I won’t forget him waking me up at 5am demanding food by jumping on my bed and meowing.
In the last few years he’d had some health issues. Problems with his eyes meant he went blind, but he still enjoyed his food and showed he wanted to be around. Last week though he started having more issues, was in pain and no longer had the same interest in food. The kindest thing was to let him go, but it was hard for Vicky, her parents and for me. I’ve been pretty upset since, though trying not to make me any more ill.
A few days ago I also got news that Glamourpuss (RL name Trevor), one of my guild friends in World of Warcraft, had lost his fight with cancer. Although we weren’t best friends, I’d spent many a time playing and chatting with him, and it’s hard to believe he won’t be logging in again. He was an awesome member of the guild, and I know I’m not going to be the only one who misses him.
I’ve also not been coping very well with this relapse. The pain has been unbearable for weeks and it’s only because I know hospital will make me worse overall that I’ve not gone in for painkillers. I even spent some time thinking of if I could get something from the local drug dealer as I was feeling that desperate. I’m not going down the illegal drug route (I’m bedbound, unable to speak, and the only person I know who does drugs is the guy upstairs and I’ve only heard him talking about cocaine, which isn’t going to help. Also I don’t want to be funding crime and would rather get my drugs from a source that’s reliable, but I sympathise a lot with those who go down that route) but it’s scary that I was considering it. Johan and I have come up with a plan. My GP is next in on Tuesday, and he’ll speak with her then to see if she can help. If I need it sorting earlier, we’ll contact another GP at the surgery or out of hours and get help that way. A+E isn’t an option as I’m too ill to get there and cope with the lights, sounds and things. Knowing it’s going to be sorted is making it easier to cope with, though it’s still hard.
We’ve bought a small Christmas tree for my room. It’s purple tinsel, and we’re going to put it on a box in the corner so I can see it. It’ll take a few days but it’s something to look forward to. Johan also got some decorations for my room. I’ve been having some of the chocolates from my advent calendar, though not every day due to feeling too ill and forgetting. It has penguins on it and my name. Johan also got mince pies and other goodies from French Oven, one of our favourite shops in Grainger market. People have also been far too nice to me and have been sending me cards, presents and linking me to pictures of penguins, which has cheered me up a lot while I’ve been feeling so poorly. I’m very lucky to have Johan and my friends.
I still have Christmas shopping to do. I’ve got to get presents for Sammie for Christmas and her birthday, and get some goodies in so we have a nice Christmas. Johan was feeling overwhelmed by the thought of having to cook Christmas dinner so I’ve told him we’re having a takeaway that day. It can be our tradition 🙂 I’ve bought a present for my Spoonie Secret Santa recipient but need to get it wrapped and posted next week (I think I’ll need Johan to help there). I was wanting to get and send presents and cards to my friends and those who have been so nice to me, but I’m too ill to do so. As we’re waiting to hear about my DLA (runs out next month, got confirmation they’ve received the form but nothing else) we can’t go too mad but I have planned to make sure we can eat and pay bills for a bit if needed. I’m not allowed to worry about it until after Christmas unless they ask me to have a medical beforehand.
This blog post ended up a lot longer than I was expecting, and took a couple of days to write. I’m not used to stopping in the middle of blog posts to sleep and rest 😛 It’s been a tough week and I’m still very poorly, but I”ve got my friends, my family, penguins and God to keep me going. It helps.
Still not doing great. Am completely bedbound, which sucks but it could be worse as I’m coping with sensory stuff other than touch okay. My bones in my upper leg are trying to cause pressure sores which is not fun, as I’m unable to move much, but I’m trying to prevent them. Tummy still rebelling against all food, but it looks like the kidney stuff was caused by lansoprazole as it’s clearing up and it hurts less. I have my penguins though. The heat from Penguin and Penelope helps my sore tummy/back more than my painkillers do, and they cheer me up in the process. I’ve been watching my colour changing candles today as well 🙂 I also watched the first two episodes of My Little Pony: Friendship is Magic season 3 today. It was awesome- scary and funny, with a great story, lovely songs and excellent animation. Definitely a great distraction, and I’m looking forward to the rest of the season now. I have downloaded some children’s books onto my Kindle app, and I’m hoping to be able to read them soon. They are easier than adult books and are good stories. The older ones are free on Kindle or Project Gutenburg and include some of my favourites. As holding a book is hell on my hands then reading on my tablet is better (plus I can increase the font size which helps with my blurred or double vision, that I have almost all the time). I don’t get on with audio books due to my auditory processing issues and terrible memory, so this is the best option for me. A shorter post today as I took an anti-nausea tablet earlier and it’s making me need to sleep now. Johan has a cold so I’m praying he doesn’t give it to me, and that he recovers quickly. He doesn’t sound like himself.