Category: Penguins!

Danni

Hair Be Gone

Autism, Computers, Danni, Gaming, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft

An update post! Christmas ended up being about as good as it could have been, considering I was still deep in relapse. I got my voice back, I opened lots of presents, we played Monopoly (Johan was the banker and moved the pieces, and I used a dice app on my tablet so I just had to tap the screen to roll). I won 🙂 Instead of Johan cooking a full Christmas dinner that I probably wouldn’t have eaten much of anyway, we got a takeaway (I still didn’t manage much, but feel less guilty when it’s a £3 kid’s meal). I even managed to get dressed in clothes I’d bought for the occasion, a penguin jumper and velvet skirt. It was nice, though not what I would have wanted if I’d been better.

This was the first Christmas where I didn’t listen to a single Christmas carol or song. This wasn’t through choice, as I adore Christmas music. Unfortunately, listening to music is just too much for my body right now and makes me feel horrendously ill. I also didn’t watch any telev.ision, not even the Doctor Who Christmas special. This is the reality of severe ME, and I’m not even right at the bottom of the scale- I’m close, but it can get worse. I enjoyed my Christmas, though I got horrendous payback afterwards.

New Year’s Day I improved slightly. Funnily enough I had a horrible day on New Year’s Eve, with more pain than I could deal with, and being very upset and grumpy as everything was just too much. Normally I’m quite happy and positive even when I’m really ill so that was not the norm for me. I couldn’t sleep but I noticed in the morning of New Year’s Day that I wasn’t feeling quite so bad. My light sensitivity had decreased a bit so I no longer needed sunglasses in a darkened room, and could get away with my normal glasses again. Moving was a little easier and I could now manage two pillows. Chewing has been a bit on and off since then but I’ll take any improvement I can at this stage.

We made the decision during the middle of December that as I was struggling so much with the bedpan, and my bladder is evil (bladder spasms mean that I can feel like I need to go urgently for hours, but can’t get anything out or it’ll come out when I’m not expecting it) we’d try using incontinence pads for a bit. It would also mean that Johan wouldn’t have to get up quite so often in the night to help me with the bedpan now I could roll over myself. We’d originally tried them in the December 2011 relapse but it failed as I just couldn’t go in the things, but this time it was a lot easier, possibly as I was already slightly incontinent. Both of us are able to sleep better now, and though it’s extra expense it’s easily justifiable as it makes both our lives easier, and means I’m no longer in as much pain from being on the bedpan for hours at a time. I do still use the bedpan during the day when my bladder is behaving, as I want to reduce the likelihood of sores and things, but having the option there is great until I’m able to use the commode again (when I hopefully won’t need them at all).

I got my DLA decision through just before Christmas as well. I’m staying on higher/higher for another two years. This was probably the best result we could have had, and a massive relief to us after spending 3 months on the form. I’m in the middle of writing another post about it so will leave that there.

I got many Christmas presents, and among my favourites were penguin thermal socks (two different people got me some) and a new baby Emperor penguin. This penguin has become one of my bed penguins (along with Penguin, Penelope and Purple Penguin when she’s not exploring) and is called Poseidon. He is super excited about everything and wants to learn. He convinced me to help him set up a Twitter and email account and wants to blog, but I’ve told him he needs to wait until he’s used to tweeting first. Penny and Penguin (his mummy and daddy) are happy with him doing this, and are trying to teach him everything as well as providing him with lots of fish.

Another of my Christmas presents was a pair of pyjama bottoms in a size 10. I knew I’d lost a lot of weight, but was still buying a size 12 because I wasn’t sure what size I was exactly. The pyjama bottoms turned out to fit perfectly, and it meant I was much more comfortable in bed wearing them (as they didn’t ride up the way that my far too large ones did). Last week I decided to buy some new pyjamas that actually fit, so raided the last of the Christmas money from my savings account and bought a few pairs from Matalan. I’ve only tried one pair (that I’m wearing now) but they’re loads comfier than the ones that are bigger. One of the sets I think will be good enough to wear as day clothes- they’re a long top and leggings, and look good enough for everyday wear. I’ll probably wear them as both 🙂

Because of the relapse my hair hadn’t been brushed for over 2 months when I finally became well enough to actually look at it, and it was a complete matted mess on the back of my head (probably from the jerking attacks I get). It had been in a plait but that wasn’t enough to stop it getting tangled. I did try to detangle it but it took me half an hour and a lot of payback just to get the tiniest strand out. When this happened in 2011 I swore I’d cut it all off. Johan wasn’t happy with the idea but as he wasn’t willing to detangle it (or help me prevent it from happening again) I had to accept it was time to cut it, especially as I couldn’t lie on my back as it was too painful. I ordered some hairdressing scissors and an awesome wig (Twilight Sparkle hair) and was hoping my carer would cut it for me, but after the scissors arrived I was asleep or not well enough when she was here, and then she’s been off sick for a bit.

In the end I decided enough was enough and hacked the lot off. I half filled a carrier bag with three big lumps of hair. I was so relieved when it was gone that I very happy. I asked my sister Becca to come and tidy it up for me and she did on Monday, and she also gave it a wash (which was much easier than it used to be and made me feel loads better). It is very short- about a centimetre in length, and really needs shaving to get it all even, but it’s loads better than it was and I really like it. I’m happy that I’ll be able to wear a wig when I want long hair (and I can have it purple again, after not being able to dye it for a few years) but it’s just so much better now, and my head feels a little lighter (though I still can’t hold my head up properly :P). Johan is finding it difficult but hopefully he’ll get used to it soon.

Now I’m just doing what I can. Resting a lot, working on being able to sit up enough to use the commode (not there yet but I hope it won’t be too much longer). I still have my Christmas tree up as I missed quite a few days where I was too ill to look at it, and it’s pretty. I’m well enough now for occasional cuddles with Johan, but we have to be careful to not overdo it. I’m still far too sound and movement sensitive for television or World of Warcraft- I tried the latter on my laptop and felt terrible even though I was just planting things on my farm. I might be getting payback from Becca being over on Monday but won’t know until I’ve slept, sometime that I’ve mostly been doing a lot of (at least 12 hours at a time, sometimes 14 or even more). I’m grateful for what I can do but hate being completely bedbound, and we’re wondering how long it’ll take for me to recover from this relapse. Each time I’ve relapsed I’ve never got back to where I was beforehand, but we’re hoping I still have some improvement to go. I saw the dietician (not sure if I’ve mentioned that before yet) and she’s prescribing me some supplements as my food intake is very poor, but we need to speak to the GP to actually get them, and Johan isn’t doing brilliantly at the moment. I’ll get there, I just hope it’s sooner rather than later 🙂

Danni

2012 in Review

College, Danni, Interface, M.E., My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life

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?
Nope.

4. Did anyone close to you die?
Yes :'(

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!!!!!! :D 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?
Happier.
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?
None.

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?
Pony Music!

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.

A Little Penguin
Little Penguin by JJ Harrison (jjharrison89@facebook.com)
Danni

Playing With Technology

Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life, World of Warcraft

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.

Giles, looking like he's plotting
Giles, looking like he’s plotting

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.

Danni

What I’m Grateful For

Computers, Danni, Gaming, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft

Yesterday I blogged about the little things that I miss because of my M.E. Today I’m wanting to blog about the things I’m grateful for, that improve my life and make it worth living.

First there’s Johan. A wonderful man who married me despite my ill health, and now spends most of his time looking after me. He feeds me, gives me my medication, helps me with toileting, wipes my bottom for me, lifts me into my wheelchair and does lots of other stuff that aren’t part of a normal husband’s job description. He also entertains me, cuddles me, holds my hand, makes me comfortable, and loves me. I love him so much and I don’t know what I’d do without him.

My daughter Sammie. Though I’m too ill to see her at the moment, knowing she loves me almost as much as I love her keeps me going. It’s hard to believe she’s almost nine years old. I’m also grateful that her grandparents are doing such a good job of looking after her while I’m unable to.

My friends. I am so lucky to have so many good friends. Some of them I met in person, others online, but they are there for me no matter what, and I care about all of them deeply. Some of them I wouldn’t have met if I hadn’t got M.E, so it’s about the only good thing the illness has done for me. No matter how we met, I wouldn’t go without them and I love them to pieces.

My tablet. An Asus Eee Pad Transformer, getting this one piece of technology has improved my quality of life so much. Even when I’m very ill, I can normally manage using it to look at Twitter, check my emails, communicate with people and do other things on it. I’m currently writing this blog post on it using the keyboard dock. When I’m lying on my side then I can still type using the on screen keyboard, which is big enough that I don’t make too many mistakes. When I’m unable to speak it becomes my voice, so it’s vital for my safety and comfort. I might have needed a loan to get it, but it was worth every penny.

My wheelchair. I can’t remember what model she is, but she tilts, reclines, has awesome suspension and is supportive. Without her I’d be completely bedbound as she enables me to get out of bed without needing to sit up too much. I’m too tall for her but with pillows we manage. If I’m not in bed, I’ll be in my wheelchair.

My computer. When I’m well enough to go into the living room in my wheelchair, I normally go on my computer. Her name is Matilda and I mostly use her to play games such as World of Warcraft and SimCity Social, but she also lets me do my shopping, check emails, watch videos, and browse the internet, often at the same time as playing a game. I’ve got two monitors set up and I’ve arranged it so my keyboard and mouse are easy to use while I’m in my chair.

World of Warcraft. This game is the best distraction I have from how ill I am and how much pain I’m in. In the game, I’m a Night Elf Priestess, who specialises in discipline healing. When I’m not keeping people alive, I go shadow so that I can kill the bad guys. If I don’t want to do that, then I tend to my farm or play pet battles with my penguins. It’s brilliant escapism, and I have the support of an awesome guild, and I consider quite a few of the members my friends.

Casual games. When I don’t have the concentration for something like World of Warcraft, then casual games like SimCity Social or Bejewelled Blitz on Facebook, and Game Dev Story or Crayon Physics Deluxe on my tablet keep me sane. I might not be any good at playing them, but they are a lot of fun and make me happy.

My laptop. When I’m unable to go into the living room, and I need access to something more powerful than my tablet, then I go on my laptop, Annika. I’ve currently got her running Windows 8 which works loads better than Vista did on her. My main use is playing Facebook games in bed, but I can do other things like shopping, reading blog posts, and she’s great for watching things on Netflix in bed.

My bed. Since I spend the majority of my time in here, I’m very grateful to have a comfortable bed. Having a double bed means I no longer fall out, and there’s plenty of room for pillows to keep me in place. There’s also room for Johan to lie down next to me, so we can have some contact even when I’m not very well. I have a memory foam topper and now a sheepskin and they help keep me comfy.

Tramadol. This painkiller is what stops me from screaming. It can’t get me anywhere close to pain free, but it does reduce my pain down to a level where I can cope with it and use other techniques to distract myself from it. I’m not particularly fond of the dopiness it causes when I have to take two, but it’s preferable to the pain I have when I don’t take them.

Doctors who listen. I’m so lucky to have a GP who listens to me and wants to help me. I’m not the easiest patient to treat and she admits she doesn’t know much about severe M.E, but she’s willing to learn. I’ve been really lucky that I’ve had no actively hostile doctors, and though I’ve seen one GP that thought I should stop using my wheelchair I’m lucky that I could see someone else instead, who is more understanding.

The CFS Clinic. Run by a physiotherapist, a psychologist (currently on maternity leave) and an OT, they are supporting me and are trying to help me get better. They even visit me at home, which is so important given that I’m mostly bedbound. After realising that I’m no way well enough for GAT, instead of pushing me or discharging me they are giving me advice on how to manage my illness, and work with me to find solutions to my problems. They are big fans of getting enough rest, but understand that I do need to do some things that are fun as well. They have written a very supportive letter to help my DLA claim. We might disagree on the name of my illness but when it comes to how they’re working with me, I can’t fault them.

My penguins. I don’t know what I’d do without my penguins. Both Penguin and Penelope spend all their time with me, and can be heated in the microwave so also help me loads with my pain. They make me happy, even if they get up to mischief sometimes. Purple Penguin also likes cheering me up, as does the rest of my collection.

The things I can manage. I’m so grateful that most of the time I can still eat, drink, roll over, type, communicate, be washed, can have my pyjamas changed, can take my medicines, and can spend most of my time on my tablet. There are a lot of things I can’t do, but there are still things I can and I’m so grateful for them.

Disability benefits. I’m very grateful that I live in a country that supports me while I can’t work, and gives me enough money to live off. This is under threat, and it scares me, but for now I know I can pay my bills, heat my flat, eat as well as my illness allows, and have a decent quality of life. Being able to concentrate on getting better so I will be able to work in the future is important, and it’s scary that it’s disappearing.

My faith. Praying to God helps me so much, and my belief in Him keeps me going. I know He understands when I’m struggling and He is able to comfort me. Although I miss collective worship, I know He doesn’t mind and I hope that I can be a good person.

There are probably other things I am grateful for that I’ve forgotten to put here. I’m having a bad day (the upstairs neighbours having their boiler replaced has made me ill) but I’m hoping I’ll be back to normal soon. I’m very tired now as I had to take an anti nausea tablet, but I hope everyone takes care and is as well as they can be.

Danni

Today

Autism, Computers, Danni, Gaming, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft

(All times are approximate.)

9.30am- Woke up to the most horrendous metal on metal clanging noise. Body screaming at me, feeling extremely nauseous and deathly ill. Not the nicest way to wake up. Johan comes in, gives me painkillers and anti nausea tablet and heats up penguins for me. I put ear defenders and sunglasses on, Johan puts curtain up over blind to block out more light.

10.00am- Morning carer arrives. Feel far too ill to have any personal care done, there are no dishes and there’s no way I could cope with the washing machine. Carer tells me to feel better and signs the book and leaves. Not long after, drilling accompanies the metal clanging noises.

10.30am- Anti nausea tablet kicks in so I stop feeling like I’m going to throw up. Go on tablet with sunglasses on to distract myself from the noise and how ill I’m feeling. Go on twitter for a bit. Noise continues.

11.50am- The sedative effect of the anti nausea tablet kicks in. Swap sunglasses for eye mask, and fall asleep. Still drilling, banging and metal clanging noise.

Some time later- Wake up to pain from ear defenders (I sleep on my side and they’re not the most comfortable things to wear, though using my neck cushion around them helps). Notice noise has stopped so take them off. Fall asleep again.

At some point during this time Johan goes to Newcastle, buys Munchkin and some dice, and comes back again. I don’t notice as I’m asleep.

6pm- Wake up. Feel drugged up but not as ill. Johan comes into bedroom and is very excited about dice and Munchkin. Tells me he wants to play it with me some time. I agree. I go on tablet and go on Twitter again, with normal glasses as not as light sensitive any more. Johan gives me painkillers and heats up penguins for me.

7.00pm- Feel a bit peckish, so get some crackers from my snack drawer and Johan brings me some cheese. They are nommy.

7.30pm- Still feeling really drugged up and drowsy but pain is bearable. Decide to go into living room as don’t know if the morning will cause me to relapse and want to get stuff done. Johan helps me into my wheelchair, tilts it back,  sorts out my pillows, and pushes me into the living room. Go on computer and play games.

8.30pm- Evening carer arrives. Language processing is all used up from chatting to Johan earlier, but know that body is too delicate to manage any personal care. Johan takes book out for evening carer to sign. I’m in World of Warcraft and wanting to get my dailies done as I can do them almost on autopilot now.

11.10pm (now)- Still on computer, writing this blog post. I feel okayish so long as I don’t move. Ability to chat is broken, but can type randomly okay. Will be going back to bed at some point. Still feel very drugged up but could be worse. I’m hoping that we did enough this morning that I don’t relapse, as too much noise is my main relapse trigger. Won’t find out for a day or two, so am doing preparation work in case I do relapse.

And that is why I’ve not written a proper blog post today.