Category: Computers

Danni

Happy Flappy Purple Penguin!

Computers, Danni, Diablo 3, Gaming, M.E., Minecraft, Penguins!, Physical Disability, Real Life

Update post (so I don’t forget in a few weeks/months/years when I need to remember stuff :P)!

  • I played lots of Diablo 3. It is fun 🙂 I bought the Reaper of Souls expansion when it became obvious I was going to finish it 🙂 I have now finished the story (including expansion) and when I last played it I was level 56 on my wizard.
  • I’ve started playing Minecraft again, on the Autcraft servers. It’s nice to not have to worry about neurotypical social constructs, and though most of the players are younger than me they’re really cool.
  • I got obsessed with Classic Alice and even took part in a Hangout with the cast. That was fun but rather draining 🙂 I asked if they’d considered children’s books for future episodes, and now they are doing so 😀
  • Nutritionist came out to try and figure out my weight from my arm measurements. It looks like I’m no longer underweight. Yay! The Fortisips are working.
  • I managed to arrange Sammie’s Easter eggs for the first time in a few years. No feeling guilty when I find them under the bed 10 months later 😛
  • Good Friday was good. I had my hair washed. First hair wash of the year! Also had chish and fips for tea, which is a Danni tradition I like to keep 🙂
  • Easter Sunday I soaked the bed by catching the end of the Hydrant tube under me and pulling it off. Johan had not long been asleep and so was really groggy and really struggled to get me sorted. That was very much unfun.
  • Later on I watched the church service on the telly. That was good. There was Indian dancing during the prayers. Then my TiVo box rebooted so I couldn’t watch any more. That was not so good, but luckily the service had finished by then.
  • Got payback from the Hangout/hair wash/bed soak. Felt really ill for a couple of weeks. Even ended up throwing up which rarely happens now with the heavy duty anti emetics I’m on.
  • 25th April was World Penguin Day. People sent lots of pictures of penguins for me and my waddle (apparently the agreed collective term on land- in the water they’re a raft). That made me happy 😀
  • 30th April started feeling much stronger than normal. Watched UP. Got annoyed at the TiVo box restarting lots. Cried a bit. It was a good film 🙂 Later on had cuddles with Johan which made up for it 🙂 Started pestering Johan to let me go in wheelchair. He said see how I am in a couple of days because he was worried about payback from watching UP and cuddles. We also took my curtain down so I could see outside again 🙂
  • Yesterday was still feeling stronger, so had loads more cuddles with Johan. I also wrote the previous blog post (which was hard and emotional for me) and finished a 1024 piece jigsaw puzzle on my tablet that I’d started a few days earlier. The picture was of an Emperor penguin and it’s chick 🙂
  • Today to Johan’s surprise I was feeling even better than the last two days. I got dressed in the morning in a rainbow dress, pink penguin socks, rainbow headscarf and cream cardigan. I was plotting…
  • The new U shaped cushion I’d ordered for my bed arrived. I ordered it with a lilac cover this time. I’m keeping the old one (which is rather flat now) as a spare, and I’m just accepting I’ll need to get a new one every year or so.
  • I also received a tube director for my Hydrant. It’s a neoprene cover for the tube with a bendy wire in it so you can angle it where you need it. I’m hoping it’ll prevent any more bed soakings.
  • After the cushion arrived (yay for delivery tracking that lets you know when it’ll be coming to the hour!) it was time for my big adventure- going outside! Johan helped me get into the wheelchair (though I managed to get up to sitting by myself with the bed’s help) and once I was settled in it and the worst of the dizziness had passed he took me out. We went down the ramp and I saw a butterfly and then as I wasn’t feeling amazing with the movement we stayed halfway down the ramp and I watched the traffic for a while. It was amazing! The sun felt warm on my skin, the wind was cold and it smelt really fresh. I was still feeling not too bad when I came back in, as I didn’t want to push it. On the way back I was able to see a bird’s nest (I could see it from my window in bed but wasn’t sure if it was a nest or not). I can still open our flat door with my feet 😀 The transfer back into bed was harder than the transfer into my wheelchair and I felt rather nauseous for a bit. The way Johan dragged me onto the bed we ended up kinda tangled in each other and we converted it into more cuddles for a few minutes, then he sat in my wheelchair next to me so we could have handholds without him restricting where I could lie on the bed. I’ve had such a good day and I’m the happiest Purple Penguin 😀
Danni outside in the sun with Penguin, Primrose and Poseidon
Danni outside in the sun with Penguin, Primrose and Poseidon
Danni

Diablo 3

Autism, Computers, Danni, Diablo 3, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

As part of the World of Warcraft Annual Pass a couple of years ago, I got a free copy of Diablo 3. I wasn’t really well enough to play it, but now that Johan was playing the expansion and he said they’d made it a bit easier I decided to give it a go.

I’ve made myself a Wizard. So far she mostly runs around in a bra and not much else firing arcane missiles at various evil beings (and bookcases which hold gold instead of books). I’m hoping eventually she’ll gain some clothes as it’s got to be a bit cold. The story is interesting and the gameplay is easy enough on Normal for even my foggy brain. I’ve yet to come close to dying, and this is with me going pretty much blind during a boss fight (lasted about a minute – I just pressed my mouse buttons and when my vision came back it was obvious the boss had died a bit before). It’s impossible to fall off ledges and stuff, and I’ve rebound all my attacks to my mouse (a Razer Naga with 12 buttons on the side) so I rarely have to use the keyboard. I’m having fun and maybe my character will wear some clothes when she’s higher level.

Last week I had a date night with Johan. We got a takeaway and watched Despicable Me. It was a really good film and I was glad to see it. Unfortunately I’ve had quite a bit of payback since then and overall I’m not doing great. I’m not terrible either (can still get on computer and play some games) but needing a lot of sleep and having to take more medication than I really like to cope. A bit sucky but it could be a lot worse and I’ve been watching a lot of kittehs which has kept me very happy 🙂

I’ve not been playing very much World of Warcraft recently, but when I have been in game I’ve been working on pet battles and getting the items from rares in Pandaria on Danni. Now I have decent gear (mostly from Ordos and from when I was still running flexi raids) the only ones I really struggle with are Jinyu and Pandaren at level 90/91, and both of them I can get down with a bit of luck with their casts (not healing with Pandaren, only one Torrent for Jinyu). I managed to get Glorious! not too long ago so now I’m only focusing on those with items I want (which is all of them that aren’t gear). Since a lot of it is just flying around looking for the rares it’s been quite relaxing.

One thing I’m happy about is the Battle.net launcher now lets me chat to people without being in a game 😀 I have a couple of friends I only talk to through Battle.net so being able to communicate with them even when I’m not able to be in WoW/Hearthstone/Diablo is awesome. Not that I’m actually using it much, but having the option is great. Yay for improvements!

The domperidone is still making me dopey. Because of this I’m now calling it dopeydone and it won’t get its name back until it stops making me so out of it. It’s helping a tiny bit with digestion (at least making my digestive system noisier) but not doing much for the nausea so I’m still needing cyclizine sometimes. The combination of dopeydone and cyclizine makes me really out of it and often sleep. Could be a lot worse though so I’m sticking with it for now in the hope the dopiness eases off at some point.

It’s currently Autism Awareness Month which I’m mostly ignoring. I did write a couple of tweets for Autism Awareness Day (2nd April) but otherwise I don’t plan on doing anything. I could have delayed my previous blog post until this month but meh 😛 I’ve been having a lot of fun discussing people who lack autism with Johan though, and how weird they are and what a tragedy it is to lack autism 😉

My sister Becca has been diagnosed with ME this week. It is not a surprise as such as she’s been ill for a while now, but still it’s sad as I don’t like her being ill. I’ve been lecturing her for a while to take it easy and stop pushing to do things, and she says she’ll actually do it now (she’s looked after me so knows what severe ME can be like). There’s definitely a genetic component to it, though interestingly Becca doesn’t have the hypermobility I have (nor can she touch her nose with her tongue, which everyone else can do). I’m going to try and support her as much as possible and hopefully she’ll learn from my mistakes and not become as ill as I am now. She told me she was bored, so I jokingly told her to start a blog. She actually did, and you can see it: waddlewddle.

Johan is currently defrosting the freezer. Turns out the fast freeze option has been on since we moved in, which would explain why the drawers had frozen solid. We’ve lost a bit of food but being able to use all the drawers again will be great and I did get an ice lolly which was nice 🙂 This coming week we’ll be doing a big shop to restock the freezer and I’m hoping to write an email to social services asking about the hoist. I’ve also got various things to buy so that will be interesting. Hopefully I’ll start feeling a bit better as well 🙂

Danni

Body Trolling

Autism, Computers, Danni, M.E., Physical Disability, Real Life

First of all, I’ve recently started reading another ME blog, Documenting M.E. Brooke wrote a blog post about living in bed that I found really helpful, including telling me about an Android AAC app that does pretty much everything I need to do so I don’t need to get an iPad now. The blog post is Tips on truly living from bed (the Android app is Speech Assistant AAC). The blog post is really good so I recommend you go read it 🙂

So, stuff has happened. Things have not exactly gone entirely to plan. Becca got some sort of viral infection and wasn’t able to stay to go to Comic Con. It looked like she’d be well enough to look after me while Johan went to Leeds, but then she tripped over the cat and fell down the stairs. Ouch. She’s doing better now but she had a massive bruise on her hip and it hurt her to move, so looking after me wasn’t going to happen.

Unfortunately I was too ill to go into the care home, so we managed to get some agency carers to stay with me on Thursday so Johan could still go see the ballet with Vicky. It meant he couldn’t see his parents though so we need to sort that out soon. I got lucky with the carers considering how short notice it was – had my normal morning call, a lunch call (that ended up being just after 11am as the carer couldn’t fit me in otherwise, but I went back to sleep so it worked well in the end) then my normal carer as a sit in from 1.30-7pm.

Partway through the afternoon I started having terrible stabbing pains in my right back when urinating. As I was calling out in pain the carer came to check on me, and we decided to phone the doctor. One of the GPs came out within an hour, and with my symptoms and history guessed it was an infection and prescribed the antibiotics that worked last time. The carer went to the pharmacy for me to get them so Johan didn’t have to worry when he got back. Johan’s train was delayed, and the carer insisted she was okay to stay until he got back. He said he enjoyed the ballet, though it moved a bit too fast. Vicky had an exam the next morning so would be arriving the next day.

Friday morning I felt terrible. Hot, sweaty, and generally bleh. That and the pain had spread to most of my urinary system. Definitely felt like an infection. I was glad I’d started the antibiotics the night before so it wouldn’t be too long. Ibuprofen brought my temperature back down and that helped a bit. Vicky arrived that day but I was asleep for most of it so didn’t really see her. Saturday morning I felt better until I took the antibiotics that morning. The fortisip I’d drank had made me a bit nauseous (the antibiotics had to be taken after food) and adding the antibiotic on top made it loads worse. I kept it down as long as I could but it got too much after about half an hour. I hoped it was long enough and took some antiemetics to try and get it under control. As they put me to sleep I didn’t see much of Vicky that evening either, as I woke up just before she had to sleep.

Sunday morning I was awake before Vicky left to go to church and go home. I saw her for a little bit which was good 🙂 I felt a bit guilty that I’d slept through most of her visit but it couldn’t be helped. She’s going off to Palestine and Israel for a year for her PhD so it will be a while until I see her again. I am going to miss her but I hope she gets a lot out of it. Next time, I hope I can go see the ballet with her and Johan 🙂 My antibiotics were only a three day course as we started it so early (a couple of hours after the first symptoms showed) and they seemed to have done the job by the time I’d finished. I’m a little achy when peeing now but that happened after the last infection and disappeared after a few days.

Other things that happened were seeing my normal GP (before the kidney infection) and she tried me on metoclopramide, which made me very agitated and feel wrong. Not being able to stop moving when moving causes my ME to get worse is a definite bad thing. I stopped them and she prescribed me domperidone to take instead. I postponed them initially until after Johan had gone to Leeds in case of side effects, and then because I wanted to get the kidney infection out of the way so I’d know what effect they were having better. I took one dose yesterday and so far today (I’m starting them slowly after what happened with the metoclopramide) and it has made me even more dopey and weird feeling than normal, and a bit hungry, but otherwise it wasn’t too bad. I have to take them 60-90 minutes before food which will be interesting.

CFS team came out today. Went about as well as it could. They’re gonna come back in two months and in the meantime I’m to keep going with what I’m doing (basically a few stretches to prevent my legs from being unable to straighten and trying to sit up as much as I can without payback) and try and get social services to sort out the hoist. Johan also gave me a wash and helped me put my rainbow dress on as I wanted something different to my normal pyjamas today 🙂

I have upgraded my desktop computer Matilda to Windows 8.1 Pro. I have Windows 8 on my laptop, but as I don’t use that at the moment I’ve missed some of the improvements that are in the new version of Windows. I’m not amazingly keen on the Metro interface, but I renewed my subscription to Object Desktop by Stardock so after downloading Start 8, Decor8, ModernMix and a few other little programs it’s now a perfect mix between the advantages of the newer OS (it runs a bit faster, has a much better task manager and some of the Metro apps are good) and having the start menu and running all programs on the desktop from Windows 7. I also have Pikachu as my Start button which made Johan facepalm but I like him 🙂 I still couldn’t find a twitter app that does what I want so I installed BlueStacks so I could run Android with Plume. It runs loads better than it used to and if I could use the mouse scroll wheel with Android it would be perfect (it kinda works, but it scrolls slightly more than one page at a time so it’s not exactly practical). A touchscreen would be nice as well, but using it with a keyboard and mouse works fine with the added programs.

My friends are awesome. Seeing Vicky was another reminder that I have the most awesome friends. When I improve and start getting out again I hope to see some more of my friends in real life, but I’m glad I can see what they’re up to using social media while I’m stuck in bed. I am worried that Johan doesn’t get to see his friends often enough. I’m hoping to persuade him to try the local tabletop gaming club (one exists in Newcastle), maybe on International Tabletop Day (5th April). He’s not sure but I think he’ll enjoy it and if he doesn’t, he can leave. Being able to go and do something not related to looking after me would be good for him, and yet it’s close enough that in an emergency he could get home quickly. Using the care agency for sit ins regularly isn’t really an option (last week’s will be about £70 for a few hours) and most of his friends don’t live locally, so I’m hoping he’ll make some in the area or at least enjoy playing games. I’m also hoping he’ll be a

It makes me sad when my friends aren’t well. As a lot of them have various chronic illnesses, I normally consider it relatively (though obviously I wish they weren’t ill at all). A few of them are struggling (physically, mentally or emotionally) and I wish I could just make them feel better. Sometimes I feel helpless when I’m unable to chat to them or do anything that might make them feel better. My friends have done so much to make me feel like I’m wanted and worth caring for and I want my friends to know they’re awesome and I love them, even if I’m not always able to show it. I love them and I want them to be happy, no matter what happens.

Danni

Stolen Meme Goodness – Old Schooling

Autism, Computers, Danni, M.E., Meme, Penguins!, Physical Disability, Real Life

I’ve got lots of things I want to blog about, so of course I can’t seem to manage any of them. Instead, here’s a meme I stole from Stimey.


What is the last thing you watched on TV?
Part of a My Little Pony episode. I realised I had no idea what was going on halfway through and haven’t finished it yet. I’ve still got stuff to watch from Christmas.

When did you last step outside? What were you doing?
Last time I stepped outside was one step while held up by two ambulance men to get from the front door of my old flat onto a stretcher, in December 2011 (I couldn’t really walk but it counts). I was going to hospital to get some teeth removed. Last time I went outside was in January. I went to the bottom of the ramp in my wheelchair to see outside and it was amazing.

What is on the walls of the room you are in?
A penguin that Sammie painted when she was in nursery. She gave me it a few years ago. I’ve yet to get my other pictures and posters up, but it’ll happen at some point.

If you became a multi-millionaire overnight, what would you buy?
A bungalow with lots of adaptations to make it accessible to Danni’s. A special hospice for those who are severely ill and need extra quiet and care. An awesome computer 😀 I’d also employ some awesome people to help me and Johan out.

Tell me something about you that most people don’t know.
In year 7 I won an award for RE presented by the Archdeacon of Liverpool. In year 9 I failed my RE exam by falling asleep during it.

Who made the last incoming call on your phone?
An unknown number on my mobile. We suspect it was the GP surgery as they phoned our landline a couple of minutes later. I don’t use the phone.

If you could change something about your home, without worry about expense or mess, what would you do?
Get that hoist I need installed. Figure out a way of installing a bath. As it’s a flat we’re limited in what we could do building wise, so moving would probably work better for bigger stuff.

What was the last thing you bought?
A phone charger for a friend. Before that, Windows 8.1 Pro and Object Desktop for my computer (yay discounts!).

Would you go bungee jumping or sky diving?
When I’m a bit better, definitely. Not sure my body could tolerate either right now 😉

If you could eat lunch with one famous person, who would it be?
How do I work out what famous means? There are a lot of people I’d like to have dinner with who are pretty well known, at least in the communities I’m in. I think having dinner with Maureen Johnson would be interesting.

Which store would you choose to max out your credit card?
First I need to get a credit card, then it depends if I have to pay it back again 😉 I love geeky shops, book shops, and small shops with awesome things. If I have to pay it back, I’m most likely going to spend it on something we need.

Is the glass half empty or half full?
I don’t know as I can’t see it. My hydrant is empty as I just finished the juice in it. The glass might just be twice as large as it needs to be. In the metaphorical sense, it’s kinda both. There’s good and bad in the world, and though I try and concentrate on the positives that doesn’t mean the negatives aren’t there.

What’s the farthest-away place you’ve been?
Either Calais, France or Balmedie, Aberdeenshire, Scotland. France is more foreign but at the time Balmedie was further from Liverpool. I need to see which is now I’ve moved north east 🙂

What’s under your bed?
I’m not meant to have anything under my bed as it’s a hospital one. In reality I have a storage bag of clothes, and whatever I’ve knocked off the bed or tables (there’s probably a few penguins, milkshake bottle tops, empty blister packs, small sweets that insist on escaping like smarties).

What is your favourite time of the day?
Probably nighttime. I’m naturally nocturnal and it tends to be quieter. Also, any time of day where my painkillers have kicked in and my symptoms aren’t too bad.

What Inspires you?
People who are able to keep going, especially when life is being crappy. Also those who are strong enough to ask for help when they need it, or know when to stop (it’s often harder than trying to push through). Also penguins.

If you want to do this meme, I’d like to read your responses, whether on your blog or in the comments. Also, Stimey’s responses cheered me up 🙂 Proper blog post coming when able.

Danni

Goodness

Autism, Computers, Danni, Gaming, Important Stuff, M.E., Penguins!, Physical Disability, Real Life, Second Life, World of Warcraft
Penguin and Penelope. Penny's wing is bandaged.
Penguin and Penelope. Penny’s wing is bandaged.

I’ve had a rough day. My prescribed Fortisips arrived and though I was meant to be prescribed only chocolate and vanilla flavours, the first one Johan gave me was Fruits of the Forest. Which my body reacted to as badly as it did the Skittles milkshake and strawberry milkshake I tried, confirming that I can’t have fruit flavoured heavy drinks now (I can manage fruit squash okay, but pure fruit juice, smoothies and fruit milkshakes cause worse nausea; and burn my throat and taste disgusting when they’re brought back up). I also had my body attempting the final part of digestion, which had me shaking, sweating, curled up in a ball and at one point crying from the pain. It lasted several hours, and I’m grateful that I didn’t have to attempt it on a bedpan or toilet as though the clean-up sucks being able to lie on my side did help a bit. I think the worst of it is over this time.

Penelope’s wing got burnt in the microwave 🙁 I performed surgery (cutting away the burnt fur/feathers and removed the burnt stuffing) and have used a part of a dressing to stuff her wing and have bandaged it up. We’re going to look into a skin graft but even if that is possible her heating days are over. I’m giving her loads of cuddles and she’s asked me to find one of her siblings to do her job. Unfortunately the Intelex website is out of stock of Penny’s sisters, but I’ve emailed them asking when they’ll next be available and if that fails, I’ll look elsewhere. She might be a disabled penguin now but I still love her very much.

Despite all that, I’m happy. I believe that every person has at least some goodness in them (even Tories, though it can be hard to see there) and my friends show me their love and goodness all the time. I have Johan, who does everything he can to make me feel as comfortable and well as possible (and didn’t even complain about the messy clean-up earlier). It can be easy to think everyone and everything is bad when that’s what must of the news concentrates on, and there are a lot of bad things that happen, but there are people trying to make the bad things less bad and do more good things. One of Nerdfighteria’s aims is to reduce world suck (the other main one is DFTBA – don’t forget to be awesome).

I might blog about the downsides of having severe ME (and like a lot of disabling chronic illnesses it sucks a lot) but part of me learning to adapt to it was to try not to dwell too much on it. Blogging and tweeting helps me with this- once I’ve written about it it frees my brain to think about other things, and knowing that there are people who care really helps. Having ME has opened me up to a whole community of good people I proudly wouldn’t have met before, some of whom I now class as friends. I still want a cure and wish my friends weren’t suffering, but I’m grateful for what it has brought me. (I try and keep out of the politics side of ME for the same reason I limit my intake of bad news- there’s nothing I can safely do to help and there’s a lot of (mostly justified) negativity that makes me more ill.)

I’m also grateful to be Autistic. Unlike the ME I don’t want to be cured, despite the difficulties it can cause. I like who I am and I wouldn’t be the same person without it. I discovered Second Life through the autistic community, and without that I would never have met Johan. Autism doesn’t make me ill- it means I think and process stuff differently, but it’s not broken. I have super senses- it may mean I can’t tolerate loud noises or certain smells but it also allows me to enjoy lights and sparklies in a way I can’t explain. And every time I see a penguin it makes me very happy. The autistic community has also introduced me to some awesome people I otherwise wouldn’t have met, and learning there were people like me has been very positive.

Lent begins tomorrow. I’m not giving anything up for it this year- if I were to give up something food related I think my dietician would kill me, and I’m not sure what else I could give up. Instead, I’m going to try and do nice things for people. After I wake up I’m going to make a list of the specifics of this, but some ideas I’ve had are writing a note to someone on Post Pals, sending someone who needs cheering up a small gift, and seeing if I can help someone with one of my skills (I might not have many I can currently use, but there are still some).

Good things that have happened today include playing some World of Warcraft, Johan and the other raiders in my guild managing to kill Heroic Paragons, managing to install a new beta version of Paranoid Android on my tablet (accidentally wiping it in the process, but it needed it and I’d backed it up yesterday), cuddling my Penguins, making Penelope feel better, getting clean, dry pyjamas on, joking with Johan, talking about interesting things with my guild in Mumble, playing with the Google Now speech recognition stuff, and writing this blog post. That’s quite a lot considering I’ve been awake less than twelve hours and haven’t got out of bed 😛 Time to sleep now, and that’s good too.