Category: Gaming

Danni

I Have a Heart

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

That’s a pretty good thing, since it’s a tad hard to live without one. Update post for future reference!

  • Been rather wobbly the last few weeks. Catching a cold hasn’t helped. Could be worse, but frustrated not been able to go on puter and stuff as much as I’d like.
  • Asked several different people (including different departments of council and housing company) to try and get help with tidying and asking why I not got a hoist yet. Everyone is shocked I don’t have one yet. Hopefully will get somewhere with something?
  • One of our neighbours keeps spending money on things they’re putting in the communal areas that they’ve not got permission for. At least one of them they’ve been told not to do before. Housing officer going to investigate, and also make note on case about noise (as it’s still a problem).
  • Saw new consultant about probable POTS on Monday (the 9th). Current conclusion is I probably have POTS 😛 Luckily she saw straight away that I’m too ill for the normal tests (they require standing, and I’m unable to sit for any real length of time) so she wants me to measure my heart rate daily for a bit, is asking the CFS team to see if they can help with that, and I might need to have a 24 hour monitor at some point. Then we’re going to try medication to see if it helps. Luckily she gets ME really well (which is good, since she researches it as well as POTS) so we skipped straight to the stuff I was able to do. She even checked I was okay to have my blood pressure taken (it was, and it was normal, as it usually is when I’m anxious- when I’m not it’s usually a bit low).
  • Didn’t have any major problems with getting the stretcher ambulance organised, which is a first. They did say at first they wouldn’t be able to get a stretcher in here but they managed it in the end. This stretcher was comfier than the last one.
  • Since I’m meant to be measuring my heart rate regularly, I treated myself to a new fancy oximeter (easiest way for me to check, plus helpful for when I’m breathless to see what’s going on). Need to read the destructions to check how to use the recording and uploading to puter features, but I’ve had a bit of a play since it arrived yesterday evening.
  • When I feel my heart doing funky dances it shows as an irregular heart beat on the monitor. I’m pretty sure it’s nothing serious, but it’s reassuring to know I’m not just imagining it.
  • My heart rate goes all over the place. At my normal kinda rest, it goes between 80 and 105 bpm. My normal oxygen level is between 90-98% (I’ve turned the alarms off on this one, as the old one used to go off whenever it got to 93% or lower). I’m guessing at least some of the lower ones are due to bad circulation. I’ve not been breathless with it on yet.
  • Things that increase my heart rate are moving, holding Johan’s hand, increased pain, talking and farting. Also trying to take deep breaths increases my heart rate to over 100bpm and reduces my oxygen level down to about 90% consistently, which I think is the opposite of what’s supposed to happen.
  • Things that reduce my heart rate are thinking of penguins, lying quietly, and holding my breath (which doesn’t reduce my oxygen level until after a minute). Explains why I hold my breath during a panic attack (and with the above, why being told to breathe makes things worse).
  • Random fact: before I got ill I used to practice holding my breath for fun. At my best I could manage nearly 5 minutes, and just before I got ME I could manage 3 1/2. I’m still able to hold it for 45-70 seconds before I start feeling like I need to breathe. I used to scare people with it 😛 I thank my larger than average lung capacity and singing lessons.
  • I managed my puter for a little bit last night. Managed to sort my budget for the month and then went into World of Warcraft, where I died a ridiculous amount of times trying to do a Harrison Jones daily. I didn’t even manage to complete it before the daily reset 🙁 I’m hoping when it shows up again it’ll skip to where I was, but I’ve got a feeling I’ll need to start again. It’ll be easier if my brain is working better though.
  • Sleep has been excessive and random. I don’t have any kind of pattern to it. With having a cold though I’m just going with it, though would like to be awake when the care workers are here more often. Trying to force it though makes me more ill, as does waking me up when I’m not ready.
  • I have had my bedding changed and hair washed, though I really regretted the latter as it made me feel horrendous. I wanted it clean for going out though. I had my own pillow and duvet on the stretcher which was good as it was freezing outside (and I got to see some frost).
  • Communication is still an issue. I need to be well enough to figure out how to teach the care workers to communicate with me when it’s difficult. Asking them to offer me suggestions of what they can do and not ask me what I want doing hasn’t worked.
  • I’ve had some grumpy days recently, but I think most of that is due to having a cold (plus running out of chocolate when I was craving some). I’m still happy most of the time though 🙂

I hope everyone is doing as well as they can be. I think seeing outside my bedroom will keep me going for a bit 🙂

Danni

Things and Stuff

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

So I had a relapse. Luckily a short one (only a couple of weeks) but it was a hard one. Lots of paralysis, loss of speech, extreme sensory sensitivities, difficulty chewing, moving and swallowing. Not fun.

I think I have to accept I’m not improving as fast as I hoped. Watching telly and playing Minecraft are too much for me at the moment. The second one hurts as it’s something I like to do with Sammie, but the movement makes me dizzy and more nauseous. I’ll have to think of something else we can play together, though for now we just talk while she plays games on her computer and I do whatever.

Urgent things on the to-do list are a hair wash and bedding change. I only want to do it with a carer I trust as I’m still not quite back to where I was. I really desperately want a shower but no hoist or shower chair makes that impossible. I had a bath last June in the care home but I really need something a bit more frequent than that. Bed baths just aren’t the same and I have a build up of dry skin on parts of my body again (there is a rule at the care agency that they’re allowed to apply makeup but not creams. I have no idea why or what the logic behind this is).

I admitted on Tumblr I’m not sure that I’m a cis (not trans) female. I know I’m not male but also don’t feel female, though do like being feminine sometimes. Since I learnt that gender isn’t a binary I realised that just because I’m not male it doesn’t automatically make me female. I think I need to do a bit of exploring in that area. I’m not particularly bothered about pronouns (though male ones do make me look at you weird) and Danni is pretty gender neutral anyway so there’s not much to change. Just something for me to sort out. I’m going with genderqueer or gender questioning for now. (My sexuality is still the same- I’m bisexual/pansexual, depending on definition, as I’m attracted to those of all genders and of no gender. Gender just isn’t a big thing to me.) Identity is important and interesting.

It’s funny but the thing I missed most during the relapse other than talking to Sammie was playing World of Warcraft. I missed the end of the Love is in the Air holiday (so didn’t get all the achievements I wanted) and most of the Lunar Festival. Patch 6.1 has come out and I’ve no idea what I’m doing. I’m still not well enough to do much in game so it’ll take me a bit to catch up I think.

We’re finally getting some of the old furniture out and next week we’re getting the daybed. Esther will have a proper bed to sleep on (we already have the mattress but the sofa is in the way). When I eventually get the hoist sorted I might be able to spend time in another room!

What has been keeping me sane the last few weeks are tablet games. I’m currently playing High School Story, Hollywood U, DragonVale, Kim Kardashian Hollywood (I feel like the only one still playing this), Sudoku and now AdVenture Capitalist. Simple games that require little brain power or movement but keep me entertained. I’m hoping as I get back to where I was I’ll be able to play more complicated ones. I’ve also restarted playing Draw Something as it’s fun.

Communication issues suck. We need a better system to get things done when I’m not well enough to do them (especially food shops). Brain power not good enough to manage to figure this out yet. I need an advocate for health/care stuff, but don’t know how to get one.

Grah. Sometimes I wish life were easier. At least I have people who love me and care about me. It helps a lot 🙂

Danni

Random Sleepy Thoughts

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

I got woken up around 1am by the neighbours playing music. They finally stopped about 3am but I’ve had to take cyclizine for the nausea it caused and I’m now sleepy but not quite enough to actually sleep.

DLA form was sent last week. It’s been received but as my end date was the 11th January I’m expecting to go without for a bit.

Johan’s Carer’s Allowance was also meant to stop (as it’s tied to the DLA claim but unlike DLA is paid in advance) yet he got the full amount this morning. Cue confusion. I guess we’ll see how much DLA I get on Tuesday (it should be slightly lower).

I’ve been spending far too many hours making spreadsheets to help me organise what I’m doing in various tablet games. They’re mostly done, though I need to remember one formula I’ve forgotten and Google isn’t telling me. I’m sure it’ll come back to me.

In Dragonvale I’m trying to breed a Panlong Dragon while it’s available. There’s a chance I’ve got it as the breeding time is long enough but there are other cool dragons it can be. The spreadsheet helps me work out which habitats I need and should put dragons into, which ones I should use for breeding and helps me keep track of what dragons I already have.

In High School Story I’m trying to party for a Country female. I keep getting Country males, Slacker males and Musician males. The spreadsheet helps me track which classmate types I’ve already got, what Hangouts I need and the party times of each type. I’m also completing as meant quests as I can, concentrating on the main storyline first. It would be nice if it didn’t conform to the gender binary but I have a few classmates I head canon as trans, genderless or androgynous.

In Hollywood U I’ve finished all the current quests and dates. I’m currently partying for a Composer male, but keep getting Composer females. The spreadsheet is basically the same as the High School Story one. I’m also trying to level a male and female of each type to level 10, so it’s easier for quests as they come along. Once I’ve done that it’ll be levelling any remaining students to level 10 and the main characters to at least level 20. As I’ve a lot less students than in High School Story I only have one trans woman so far.

I’m still playing Kim Kardashian Hollywood. I nearly quit but they came out with new quests. This one doesn’t require any brain power or spreadsheets, and I just play it to see how the storyline is going.

I’ve been able to get on my computer quite a bit recently, though mostly at night so not when Sammie has been around much (though I did get to speak to her yesterday which was awesome). I’ve mostly been working on the spreadsheets but also played a bit of World of Warcraft. I did the first part of LFR on Danni yesterday, which was easy. I’m still too scared to do Heroic 5 man dungeons though, as I’ll be the only healer.

The last few days I’ve managed to watch a few Doctor Who episodes. The latest one was Time Travel Heist. It was good, and I’m liking Peter Calpaldi as The Doctor though not how he’s mean to Clara.

Now I’m sleepy tired so it’s time for me to come off my tablet and hopefully not have any nightmares. Mine have been including my pain in them and nightmares about being tortured aren’t fun.

Danni

New Years Resolutions and Goals for 2015

Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life

Now is the time I make my resolutions and goals for the year. First of all though I look at last year’s resolutions and see how I did.

 

  1. Have a bath or a shower. – I managed this one! While I was in the care home in June I had a bath, and felt much cleaner afterwards. Definitely a success.
  2. Sort out health book/care plan. This one I didn’t manage completely. I got the most important bit done, a care sheet for the home care workers I have, but I’ve not done the full health book yet. I think I’ll be continuing this one.
  3. Be kind to others. I asked Johan, and he said I was kind to others. I also feel I was a lot less snappy at people last year, so I think this one was a success.
  4. Be kind to myself. I think I’m doing better on this one. It’s always going to be harder than being kind to others, but I think there was improvement here.

Not too bad overall. I also had a few goals- getting an iPad (I changed my mind on this one, as I now have a decent text to speech app for Android), trying to blog once a month (didn’t manage in September due to being ill), and getting out of bed again, which I did do a few times but nowhere near as much as I’d have liked. I had a Goodreads goal to read 50 books, of which I managed 46 I think (I can’t be sure as I can’t figure out how to see my own past challenges on Goodreads). That’s not too bad and I’m hoping to manage it this year. One goal I did manage to complete though was NaBloPoMo in November, which made me happy 🙂

So, resolutions for this year:

  1. Go to the toilet. This one might sound strange, but I’ve not been on a proper toilet for years. I’m doubly incontinent, but sometimes I can control things a bit. I would really like to go on an actual toilet at some point this year.
  2. Sort out getting the flat sorted. I’m not sure how this one is going to work yet, but it needs doing. If my bedroom, the hallway and the living room are all properly accessible to me in my wheelchair without having to move stuff around, then that will be a good indicator that the flat is getting sorted.
  3. Improve my eating. I’m not gaining weight and I need to. I’m also low on several vitamins and minerals. This one isn’t going to be easy, but I’m hoping that being referred back to the dietician and having more help from the carers when it comes to mealtimes this should be doable. Bonus points if Johan’s eating improves as well 🙂
  4. Finish the health book. I’ve now added this to HabitRPG so I have a daily reminder I need to do this. I’ve also got a working printer, and I’ve bought the last bit of stationery I need so I’m going to really give this a go.

All of them require help from other people, which will make things interesting. The one I can do mostly by myself is the health book, as I can type the pages on here and only need someone to fetch the printouts, the folder and the page protectors for me. I’m also making some goals (all except the reading one I’ve added to HabitRPG to make it easier to remember):

  • Read 50 books. I’ve been well enough to read now for a while, which is awesome. My Kindle Paperwhite makes it easy for me. If I manage this goal, I’ll reward myself with a new Kindle (the new version will make it even easier for me to turn the pages as I just touch the sides rather than the page bit itself).
  • Buy the daybed. Esther will feel loads better if she can sleep on something other than our old sofa. I’ll be able to go into the living room more. Win win. Just need to sort out collection of the old sofa (and the broken wheelchair, old bed frame and several boxes of junk) and actually buy it. I have found one I prefer to the Ikea one on eBay from a few different sellers, so that means I can buy it myself.
  • Get my pictures and posters on the wall. I’ve been wanting to get this done since I moved in, and it hasn’t happened yet. This year I intend to fix that. There’s a lot of them though so it’ll have to be done in bits 😛
  • Play some of the games I already own but haven’t yet tried. I’ve got loads of games that look good on Steam and from Humble Bundles. I know I have limited and inconsistent time on the computer, but I’d like to try at least 5, more if I can. Some of them are for my tablet as well so I can try them even when I’m not on my computer.
  • Catch up with Doctor Who and My Little Pony. Very dependent on being well enough to watch television, but I’m hoping I can manage this.

Lots of things to be getting on with. If my health improves I obviously want to be getting out of bed more, but though it’s better than it was this time last year I know it can be very up and down. Three main symptoms are keeping me in bed- dizziness (which turns into fainting if I’m upright too long), muscle weakness, and muscle spasms (which have improved since I stopped pushing myself too much but still are a daily occurrence). Oversensitivity to everything (well, not everything but it feels like it at times) would need to improve for me to go further than the living room or the ramp outside, as the noise, light, smells and movement are too much otherwise. I’m hopeful though, and maybe seeing Professor Julia Newton will give me some answers.

 

Danni

Merry Christmas!

Autism, Computers, Danni, Gaming, M.E., Minecraft, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life

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 😀 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 😀

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 😀

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 😀