Dec 252014
 

To all my readers and friends, Merry Christmas! Or if you celebrate something else or nothing at all, I hope you have a wonderful day!

I’ve had an awesome Christmas so far. Yesterday Sammie came over for a bit to pick up her presents, which meant real life hugs and squishes were had πŸ˜€ Best present ever!

Today I’ve been completely spoilt with masses of presents, from lots of family and friends. I’ve been unable to get all mine to others sorted in time for Christmas this year, but I’m hoping to get those I’ve missed within the next week or two. My favourite was a gift from Sammie- she made a ornament of us two as penguins, me being purple and her being pink, hugging each other. Me being a purple penguin and her being a pink penguin has been our thing now for many years, so it means a lot to me. She also got me new penguin bedding and a matching cushion which are super cute πŸ˜€

Johan had bought me a telly for Christmas a few months ago, but surprised me with a Pingu ball (Hafu Pingu rather than telly Pingu), and Rarity, Rainbow Dash, Fluttershy and Twilight Sparkle soft toys. My sister Meggy had visited a few days ago and she gave me an amazing super soft penguin which I love to stroke. My other sister Becca gave me some awesome penguin pyjamas and penguin stickers. Esther gave me some penguin fuzzy socks (I love fuzzy socks!) and an awesome penguin Christmas jumper. Other presents included penguin stationery, a loom band penguin and money/gift cards. Very very spoilt Danni πŸ˜€

I also saw my brother on Christmas Eve, which was a lovely surprise. I’ve spent most of the day on Skype with Sammie, sometimes playing Minecraft (with her and her friend), sometimes just talking. I’m so grateful that I’m well enough to speak to her, be on my computer, listen to a few Christmas carols and songs and hopefully later have Christmas dinner. I even managed to speak to my mum-in-law on the phone for a minute. Now is time to rest and hopefully I’ll continue to have a good day πŸ˜€

 Posted by at 5:56 pm
Nov 262014
 

Less sad today. Still don’t know why I was yesterday but never mind. Today was an okay day, though had an unexpected visit from someone wanting some blood, sent by my GP. I’m not entirely sure why but went through with it.

There is so much I want to do in WoW and I’ve not enough time/energy to do it all πŸ˜› I’m so grateful I’ve been able to get on my computer so often though. I also played some Minecraft with Sammie and her friend which was fun, even though my sound sensitivity made it more draining than usual. There’s My Little Pony comics on Humble Bundle I might have to get as presents.

Fed up of the pain from eating. Is so tempting to stop completely, but I’m already malnourished and losing weight so it’s a bad idea. Today it was plain chicken breast and salad that set it off. Yesterday a sandwich (and later on a wrap). The day before, sweet potato chips and a milkshake. Pretty much anything that isn’t pure sugar and that’s dodgy too. I know wholewheat and really fibrous stuff is the worst, as it just clogs me up rather than helping things along, plus the pain is worse. Yet they include some of my favourite foods πŸ™ When I’m well enough I should probably get some tests done to find out what’s going on, as even with the domperidone I’m still bringing up bacon from yesterday’s wrap.

What’s it like to be pain-free? I don’t remember. I’ve been in pain of varying amounts since I was 5 with no real let up. Maybe earlier, but my memory is fuzzy from before then. When I was a kid it was mostly reflux and joint pain (dismissed as growing pains, though they didn’t stop after I stopped growing). I didn’t even know it wasn’t normal. Now I’m just relieved I can get it down to bearable levels with tramadol. Dunno what I’d do if I couldn’t, other than be lying in bed unable to do what I can now. I’m grateful I can do what I can.

Penguins are awesome. Saw baby penguins on Facebook today, sent by a friend. They took away the rest of the sad from last night. Sometimes I just need to remember to be more like a penguin. Noop Noop!

 Posted by at 10:42 pm
Feb 172014
 
A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.

A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.

I’m now nocturnal, thanks to sleeping most of the day on Thursday when I was meant to be going to the hospital. I’m not concerned about this, as otherwise I’m not doing too bad for me (so long as I don’t move, I’m not touched, and I don’t eat) and I figure it’ll sort itself out in its own time.

For Valentine’s Day I kicked Johan out so that Becca and I could sort out his bedroom. He went to see The Lego Movie (he really enjoyed it and said it was very good). Becca brought all the boxes in Johan’s room into mine so I could work out where things go, and after a lot of work (mostly by Becca) we got it sorted. When she’d finished, she made the bed, put Patricia (the penguin) and Charlie (the Jedi monkey) on top and took a photo so I could see.

Johan was very happy with this, and we decided that on Saturday he’d replace the single bed with the double bed I used to use, as there was now room to do that. He also moved the remaining boxes into the cupboard, dismantled the clothes rail, moved in the spare computer desk, and a spare kitchen cupboard we happened to have for his clothes (until we get him a chest of drawers). He’s now wanting to put his posters up (we can’t paint until I’m less sensitive to smells or able to disappear for a few days) so it feels more like his space. Since he’d been sleeping in what was effectively a storage room for two years, I’m hoping he enjoys having a proper room (and having the double bed- he’s yet to tell me which is more comfortable though).

The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.

The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.

This means our flat is getting closer to being sorted. Now the living room is the main room that needs working on, but that shouldn’t be as difficult as Johan’s was. We have a lot of boxes to sort through and I need to get some bookcases for all my books. The plan is to get a daybed frame and use that with the (now spare) single mattress to replace the sofa, so that if we do have someone staying over they’ve got somewhere to sleep, and maybe I’ll be able to lie down in the living room when I’m doing better. This is mostly because we don’t otherwise have room for all three beds (my hospital bed, the double bed in Johan’s room and the single bed) and that mattress is really comfortable so I don’t want to get rid of it πŸ˜› Our sofa is rarely used as such anyway (Johan spends all his time in his computer chair, and I’ll be in my wheelchair if I go through there) so having a daybed is a better idea. We’ll also be able to use bedding and cushions to make it purple πŸ™‚

Becca went home yesterday (Sunday). I think she enjoyed her stay here, even though it included a lot of hard work. It was nice for us as well- having someone else to talk to and just be with for a few days was good, and she has a pretty good understanding of my needs so I didn’t have to worry about offending her or upsetting her if I needed some time alone. We have determined that she doesn’t want to do personal care as a job, but she’s able to provide mine okay so it meant Johan got a bit of a break, even while he was here.

Since I’m not doing too bad, I’ve been playing probably too much World of Warcraft. In the last day I’ve got my Pandaren Monk Dannila to level 90, and my first Battle Pet to level 25. After I wake up I’m going to be doing some recruit a friend levelling with Becca, which will be fun. We’re currently level 56 and I’m hoping we’ll reach level 60 so we can get flying (I’m supplying the gold, as my gold making is ticking over even though I’ve barely worked on it recently). Now I’ve got my first max level battle pet I’m finding it much easier overall, so it shouldn’t be too long before I have several of them. I’ve got a list of goals for World of Warcraft so I have some idea what to work on, especially as different things require different amounts of brain power/concentration (I’m not well enough to raid at the moment but pet battles and levelling are fine).

I still can’t watch My Little Pony, which is frustrating. Not sure why exactly but I just can’t seem to understand what’s going on. This is especially confuzzling as I’m able to play World of Warcraft okay. The same thing applied to trying to watch the Winter Olympics- I had no idea what was happening, though the figure skating I saw was pretty. I’m managing to read okay (even if I can’t remember it afterwards) so I’m going to guess it’s a problem with auditory processing being particularly bad at the moment. That’ll also fit with me struggling to understand Johan when he’s talking to me. I need to get the subtitles on for Ponies but that requires brain power and mine is limited πŸ˜›

I’m happy. Johan has been cheerful recently as well. I’ve done some productive things (cancelled Netflix and Unblock US as we’re not using them right now- we’ll resubscribe when we want them) and I’ve got a plan for other things that need doing so I can sort them when I’m next able to. Even though I might need to wait until June to see my consultant (that’s when my next appointment is- I’m hoping for a cancellation) I feel like I can get things sorted and moving forward now. I still have some problems (my body does not like me eating- doing so causes bloating, nausea and pain no matter what I’m having) and I can’t get out of bed yet, but they will get better.

 Posted by at 6:53 am
Feb 122014
 

Tomorrow morning I’m going out properly for the first time in quite a while. I have a hospital appointment to see my consultant at my GP’s request. It’s not at my local hospital, so it’ll be the furthest I’ve been in well over a year (it’s in Newcastle so not excessively far, luckily). As I’m not currently well enough to sit in my wheelchair at all (unfortunately I’m yet to have a repeat of the good days last month) I’m going by stretcher.

This is a big event, and requires a lot of preparation. I’ve selected a pair of pyjamas that are fancy enough to be worn as day clothes, yet are still comfortable. With them I’ll be wearing my arm warmers, as they’re short sleeved and my arms get cold (and in the event I need a blood test, they’re easy to take off). I’ll also be wearing some warm bed socks in an attempt to stop my feet freezing. I’ll need my tablet in case I lose speech and to communicate with the outside world if I’m up to it, and my phone for internet.

To accommodate my sensitivities, I’ll be taking my sunglasses, eye mask, ear plugs and ear defenders. Since too much light and noise make me much more ill I can’t be too careful there (hospitals are not known for being restful places so I try and avoid going there when possible). I’ve not found a decent way to deal with my sensitivity to smell so I’ll be taking an antiemetic and mints and hoping it isn’t too bad. Spare pads and wipes will come along just in case, and I’ll need my Hydrant to prevent dehydration. I’ve got a couple of blankets to try and deal with my temperature fluctuations, and will have a cushion or two to try and make it as comfortable as possible. I’ll also have my appointment letter, a short explanation of my communication needs/what to do in an emergency, and a list of important things to talk to the doctor about.

In a strange way, I’m looking forward to it. Getting out of bed is so rare for me that even going to the hospital is exciting. There’s a pretty good chance it’s going to make me crash afterwards (I’m currently so touch sensitive that even hugs make me more ill, and movement makes me feel horrendous) but we’re planning for that. I have lots of milkshakes and stuff in as my chewing is dodgy already and the easier ways to consume calories I have, the better. Seeing outside my bedroom will be fun (assuming I’m well enough to wear my sunglasses rather than needing my eyemask- otherwise I’ll just have to listen :P).

Since I last blogged I’ve seen the district nurse, who was the one to recommend getting stretcher transport when we explained my problems with trying to go by wheelchair, the CFS team who have shown Johan how to prevent my legs from unstraightening when I’m not well enough to straighten them myself and were reassuring me about stuff, the dietician who has prescribed some milk based supplements because of my new intolerance to heavy juice drinks (can have squash but not smoothies, proper fruit juice, fruit flavoured milkshakes or fortijuice) and my eating being really poor again, and the social worker who was doing a care review and she’s going to pass on our concerns for us (I’ve not been well enough to email the agency) and contact the doctor about getting the supplements. All those visits have meant I’m not doing as well as I was before them, but I’m not that bad for me.

Johan went to Manchester to see a ballet with Vicky, and my sister Becca came over to look after me, which was good. She’s also here now, originally to go see someone from the get back to work people (she’s in the work related activity group for ESA- they are doing the work related activity) and also just generally helping us out a bit. The break helped Johan a lot and he’s overall been more positive and able to cope. His trial for the raid team in World of Warcraft went well, so he’s now a permanent member and they’ve since got Siegecrafter Blackfuse Heroic down in 25 man, so there’s only two bosses left for them to kill. He’s really enjoying it and it’s good for him to have something to focus on There’s another discipline priest on the raid team that is his main competition, and he’s occasionally been beating him while less geared so that has made him very happy πŸ™‚

I’ve been playing quite a bit of WoW, mostly doing my daily cooldowns, Timeless Isle dailies on Danni and levelling my lowbies. I invited Becca via Recruit a Friend and we’re levelling some characters together- she’s a warrior and I’m a hunter. I don’t know either class so that’s been interesting πŸ™‚ For some reason I’ve not been able to watch television, even easy things like My Little Pony- my brain just can’t process it right now. I watched a little of the figure skating in the Olympics but I was absolutely exhausted afterwards, in a way I don’t get when I’m playing WoW. Danni is weird πŸ˜› I’m so glad I’m still able to get on my computer and play WoW though, as it’s helping me cope with everything, especially since my digestive system really hates me now (recently it’s been taking between 12-36 hours for food to leave my stomach, which I know because I keep bringing it back up and it’s identifiable).

If I don’t blog for a bit then it’ll be because I’m recovering from the hospital appointment. I’m hoping it won’t take too long though as I have so many things I want to blog about as soon as I can πŸ˜€

 Posted by at 8:53 pm
Jun 162013
 

It feels strange that I’ll only be 26 for two more days. On Tuesday I turn 27. This is the first year I’ve felt like I’ve not really done anything of note- I got more ill and have spent more than half of it completely bed bound, but I’ve not been anywhere interesting, or done much.

Not sure what I’ll be doing on Tuesday. Have decided to get a nice takeaway that evening- either Lebanese or Sushi. I also want a birthday cake. Having a birthday cake is very important to me, especially since on my 16th birthday I didn’t get any (and I’d had two GCSE exams that day so my birthday being pretty much ignored didn’t make me feel better). Birthday cake is one of my favourite foods, especially with lots of nice icing.

I was torn between buying a new television or a new monitor (I’d saved a bit of money and got a refund from a cheap telly I tried and ended up not being as described- don’t say there’s a DVD drive if there isn’t!). I’ve ended up buying a 24″ Dell monitor, with a resolution of 1920×1200. I don’t like 16:9 resolution for my monitor (I need the extra height) and trying to find a 16:10 monitor these days is really difficult. This one has excellent reviews and I’ve bought a very good used version from Amazon to save about Β£40 on the new price, as it working is the most important thing to me. I’ll get the television in the future, probably around the time I get a Virgin box in my room (I’m well enough to watch stuff now and the streamed stuff isn’t quite as good as what I can get through the box). The new monitor will help me play World of Warcraft better and will make things a bit easier to see, so I’m looking forward to it. I could use the old monitor as a television temporarily (it has speakers and a HDMI connection) though I’m not sure I’ll be able to see it properly at a distance with my eyesight as screwy as it is.

My health has been variable. Had a good few days when it was really warm, then started going downhill a bit with lots of pain and mood swings and stuff. Was worried it was a relapse but it turns out I was about to start my period. First one that Johan has had to help me with (I have a Mirena coil which means I only rarely get periods- can go months or years without one) and he didn’t know what it was at first πŸ˜› Luckily as I’m wearing pads anyway it wasn’t really any extra work for him. Seems to be nearly over so hopefully my body will settle down again, as I was enjoying not needing as many painkillers and hate being all moody.

The incontinence pads the NHS provided me aren’t absorbent enough. I think my urinary retention over the past year has stretched my bladder, as when it completely empties there is a lot of liquid- over a litre at a time. It’s rare I can get it to empty completely (have loads of issues with it) but when it does it was too much for those pads to deal with. Luckily I still have plenty of the ones I bought myself which can handle my bladder emptying, so am using them again until it’s sorted. Unfortunately my carer wasn’t able to explain to the district nurses the situation properly (I said we needed to change for more absorbent ones- she said I wanted to order more), so the district nurse said we’d contacted the wrong people and that I need another assessment as I think she didn’t know I’d just had one) so I’m going to ask the GP to sort it, if I ever see her.

It’s frustrating when I word things very carefully to make sure what I need is really clear and then people reword it to something that doesn’t mean the same thing at all. Happens all the time and means things end up harder than they should be. I’m not blaming the carer for this- she didn’t know that her wording wouldn’t work or that it was an issue for me, but it’s still frustrating anyway.

I have finished playing Katawa Shoujo (a romance visual novel set in a school for the disabled in Japan). My favourite route was probably Hanako’s, though I enjoyed all of them except maybe Shizune’s. Shizune is too manipulative and it brought up some bad memories. I sometimes got really frustrated with Hisao, the main character, as he often acted in ways that were too different from how I’d act. It was really enjoyable and I liked it a lot. It does contain sex scenes but they can be turned off (I still wouldn’t recommend it for kids though). I thought the portrayal of disability was pretty realistic, and I related a lot to Hanako, Rin and Emi (I have aspects of all of them, though Rin thinks closest to how I do).

I’ve also caught up with My Little Pony: Friendship is Magic. I enjoyed season 3, but felt the ending was too rushed and confusing. It should have been split into two episodes. I don’t mind the outcome too much, but would have preferred more explanation. I’m interested in Equestria Girls which is coming out today in the US, so might have to see that when I can.

Still nothing from the OT or a social worker yet. I’m frustrated that I’m doing so well in some ways, but I’m stuck in bed because I’m waiting for an assessment. It’s not safe for me to transfer without a hoist and I’ve fallen too many times now to risk it again. I also want to rearrange my powerchair assessment but I can’t do that until I know when I’ll be able to get out of bed again.

My hair is annoying me. It’s a few inches long now and sticks out everywhere. I can’t get it to behave. I think I want to shave it all off as I much preferred it shorter and I’m still not able to look after it properly (touch makes me really ill). My noise sensitivity isn’t as bad now and I can be more upright than before so I’m hoping that I’ll be able to get it done soon if I wear earplugs and things.

We watched the Sony presentation at E3 online, and have decided to get a Playstation 4. Johan has put in a preorder and I’ll be buying it for his Christmas/birthday present. It looks really good, and the price is lower than we were expecting. It’s the first console we’ve been so impressed by we want it as soon as it comes out. Will mean a bit of saving but not too much and it’ll be easily doable. Being bed bound has its uses. (The main reason I don’t just buy a hoist and things is I don’t know what ones to get without an assessment first- I’d be quite happy to buy what I need if I knew what it was I was meant to be getting. There’s also the problem of sorting out maintenance and stuff like that, where if I stick with NHS or Social Services they are responsible for it all.)

Hopefully I’ll hear something from someone soon. I’m starting to get bored in bed- I have been here nearly constantly since November so I think that’s understandable. If it does look like it’ll be loads longer then getting a television and things will at least make it more bearable. I’m happy that I’m nowhere near as ill as I have been- severe ME beats very severe ME any day πŸ˜›

 Posted by at 7:51 am
Jun 052013
 

Danni wearing purple wig with pink at the front, surrounded by penguins.

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.

  • I have a Tumblr now. Tumblr is cool. I’m atΒ http://dannithepurplepenguin.tumblr.com/(Dannilion was taken) and I’m slowly figuring it out.
  • 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 πŸ™‚
  • 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 MilkΒ 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 πŸ™‚

 Posted by at 12:22 am
Jan 062013
 

I started doing this two years ago, and think I’ll continue πŸ™‚

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) πŸ˜€ (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 πŸ™‚ I’ve made new ones that are internet organisation based πŸ™‚

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 πŸ˜›

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 πŸ˜›

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 πŸ˜› 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 πŸ˜›

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 πŸ™‚

12. Whose behaviour merited celebration?
Johan managed to look after me even as my healthΒ 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!!!!!!Β :DΒ 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 πŸ˜› 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 πŸ™‚

22. How many one night stands?
None.

23. What was your favourite TV programme?
Doctor Who and My Little Pony: Friendship is Magic πŸ˜€

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 πŸ™‚

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 πŸ˜› 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 πŸ™‚

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 πŸ™‚

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 πŸ™‚

32. How would you describe your personal fashion concept in 2012?
Pyjamas were the definite main feature. Also got a penguin onesie πŸ˜€

33. What kept you sane?
Chocolate, penguins and TwitterΒ :)Β (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 πŸ™‚ It wasn’t even the best macaroni cheese in the world πŸ˜›

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)

 Posted by at 8:29 pm
Dec 152012
 

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 πŸ™‚ 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 πŸ™‚ 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 πŸ˜› 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.

 Posted by at 6:05 am
Nov 112012
 

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 πŸ™‚ 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.

 Posted by at 6:12 pm
Sep 022012
 

Been trying to blog but it not happening. Even Twitter and Facebook been very hard work.

Got a new microwaveable penguin. Her name is Penelope, or Penny for short. Has been good for heat.

Got friends over. Tis nice, except when I can’t cope with people. That be frustrating.

Got new soft pyjamas. Also some slipper sock things I can wear instead of shoes in chair.

Gonna get an electric wheelchair in 3-6 months, hopefully. Also a manual that fits. Both tilt in space.

Went to library. It is awesome. Got some books, not read them yet. They have cake.

Asda got my favourite ice lollies in again. Hurts my hands to hold them as heavy but very nommy.

Saw Olympics. Was good. Not seen Paralympics yet, but want to. Doctor Who was good but weird.

Had first paralysis for a few months. Was bad. Triggered by doorbell. Will need to see about getting doorbell replaced.

Playing games on puter when can. Fun. Distraction from pain and illness feeling. New patch in World of Warcraft means got to try and learn again when not able to learn. Scary.

Got no voice today. Don’t know why. Very frustrating.

Found shop in MetroCentre that sells ponies. Got a few Twilight Sparkles, a couple of Raritys, a few Rainbow Dash, an Apple Jack. Johan has Fluttershys and a Twilight Sparkle. I likes ponies.

Getting tired. Will post this now and work on other posts when feeling up to it.

 Posted by at 9:10 pm