Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

Week 30 Review

Autism, Danni, Gaming, M.E., Physical Disability, Real Life, Week in Review
Danni is smiling. They are wearing a purple penguin dress without sleeves, and have Poseidon the baby Emperor Penguin on their shoulder.
Danni and Poseidon

Been another mixed week, with some really good bits and some not good bits.The best bits were getting a bath (first time in 2 years) and seeing a friend 🙂

I had the bath on Tuesday, and this time remembered my penguin bath toy. I was allowed to just soak in there for about 10 minutes with the light off which was amazing. It was nice to be properly clean again.

I saw my friend Marga on Sunday, after having to cancel the week before due to migraine. She is awesome and the time disappeared really quickly. Talking to her helped me feel better after some not great days.

Wednesday and Thursday nights were not good. I’m meant to have hourly checks as not able to use the buzzer, and though on a night time this often becomes 2 hourly due to lack of staff (2 care workers for 22 residents, most of whom need a lot of help) those nights it was even worse than that, resulting in being covered in my own poo for hours (diarrhoea caused by my body disagreeing with the food). The resulting washing and bedding and clothing changes made me feel horrendous. A couple of the care workers also made me feel really guilty for needing frequent help, which also wasn’t good. (From the future: I did put in a complaint the day I came home.)

When more with it, I spent a lot of time watching TV shows I needed to catch up with. First was Steven Universe, which both confirmed a theory I’d had from season 1, but also gave me a lot of other questions. I now have to wait for new episodes to come out, which I’m not used to. I also watched some of last year’s Doctor Who. Bill is an awesome companion, and I’ve really enjoyed these episodes.

I didn’t watch much of ESA this year, but I did catch the last race and the closing speeches. Saw Johan on the stream which was good (though I did have to check it was actually him – silly face blindness :P). It looked like a really good event, and now I just need my body to let me travel so I can go next time 😛

  • Overall mood – Mixed: awesome for Tuesday and Sunday, bad for Thursday and Friday, good for the rest of the week, with mostly high symptoms.
  • Average daily sleep – 8 hours 47 minutes
  • Longest sleep – 15 hours 5 minutes from Friday afternoon to Saturday morning (deep sleep 56%)
  • Clothes changed – 7
  • Wipe wash – 6
  • Water wash –  1 (in the bath!)
  • Hair wash – 1
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episodes 4-8, Steven Universe up to Season 5 episode 25
  • YouTube videos watched – Some
  • Streams watched – ESA Marathon on Twitch
  • Music listened to – 0
  • Podcasts listened to – Welcome to Night Vale episodes 42 and 43
  • Blog posts written – 1
  • Penguins cuddled –  Primrose. Nicky, Isabella and Poseidon
  • Johan hand holds – 0 (he’s in Sweden)
  • Johan hugs – 0 (ditto)
  • Time on Twitter – 1 hours 56 minutes (average 16 minutes a day)
  • Time on Reddit – 38 hours 41 minutes (average 5 hours 31 minutes a day)
  • Time on Facebook – 3 minutes
  • Other –
    • Day staff are good, especially since they let me sleep now they know I don’t want waking up every hour.
    • Some night staff are great, and are just struggling due to not enough of them. Some, not so much.
    • Got soaked when someone didn’t put the top on the Hydrant properly and it fell off the bed. That was not the most pleasant thing ever, but it did cool me a down a little bit.
    • Some of the staff don’t understand my communication issues. Turns out even writing them down in a guide doesn’t always help.
    • WordPress has a new editor and it’s weird. If this is messed up, that’s why 😛

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 116
  • Godville Heroine Level – 57 (10% done)
  • Godville wood for ark – 33.6%
  • Godville savings – 1 million, 426 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (15 hours 37 minutes, average 2 hours 13 minutes a day)
  • Other –
    • Just about completed the Gyrodite event in time. It was annoying.
    • New fishing event, which was really annoying. Bought the golden rod with leaf tickets (premium currency) and though I completed the main goals, I didn’t get all the items. They made it a lot harder and I’m not happy.
    • Spent very little time on other games, but did finally complete another cross stitch while listening to podcasts.
Danni

Week 29 Review

Danni, M.E., Penguins!, Physical Disability, Real Life, Week in Review

Danni and Johan are outside. They are both smiling.

Danni is in their wheelchair. They are wearing a purple mermaid tail.

Two photos! One outside our front door before travelling to the care home, one in my bedroom in the care home.

Been a bit of a mixed week. Monday I was preparing to go into the care home, and Tuesday was the day I went in. During the day it’s mostly been okay after resolving some misunderstandings (I asked for hourly checks as I’m not able to use a buzzer, and they thought that meant waking me up every hour). Night time, not so much. There aren’t enough staff for someone to check on me hourly, and that means lots of pad leaks and needing entire bed/clothes changes and washes, which make me feel horrendous.

Johan is in Sweden for ESA Summer (ESA as in European Speedrunning Assembly, not one of the other ESAs). I’d much rather be with him or at home, but that’s not an option so I get to stay in a care home for a couple of weeks instead. The staff are fine, but it’s not home and they’re not really used to someone like me (mostly able to communicate but needing prompting for things I need). This time I brought the Surface and my normal Tablet, and I had downloaded some shows to watch to save the data on my phone.

Didn’t get out of bed this week after arriving, mostly because of feeling rotten from the journey/needing lots of bed changes/exhaustion from trying to cope with a new environment, new people and stuff. My room is really hot and I didn’t think to bring a fan. I do have Poseidon, Primrose, Nicky and Isabella with me and have been talking to Johan and Sammie through Hangouts. I’ve also spent far too much time on Reddit, as it’s the only thing I can concentrate on at times.

  • Overall mood – Mostly good with high symptoms, as was only tracking once a day.
  • Average daily sleep – 10 hours 29 minutes
  • Longest sleep – 18 hours 57 minutes from Saturday night to Sunday evening (deep sleep 61%)
  • Clothes changed – 4
  • Wipe wash – 1
  • Water wash – 3
  • Hair wash – 0
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episode 3
  • YouTube videos watched – Lots
  • Streams watched – Penguin Cam and stuff on Twitch
  • Music listened to – Random selection from Google Play while travelling to care home
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled –  Yes 🐧🐧🐧
  • Johan hand holds – A few before he left
  • Johan hugs – 0
  • Time on Twitter – 9 hours 1 minutes (average 1 hour 17 minutes a day)
  • Time on Reddit – 33 hours 1 minutes (average 4 hours 43 minute a day)
  • Time on Facebook – 5 minutes
  • Other –
    • Migraines are evil. Had to cancel a visit because of one.
    • It’s noisy here, especially as some residents have dementia and spend most of their time shouting or screaming. Still better than our upstairs neighbours at home though (as it’s not arguing).
    • Wanting chocolate but Amazon is rubbish for it.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 115
  • Godville Heroine Level – 56 (75% done)
  • Godville wood for ark – 33%
  • Godville savings – 1 million, 396 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (4 hours 10 minutes, average 35 minutes a day)
  • Other –
    • New Gyrodite event in Animal Crossing. Not been concentrating much on it.
    • Not been playing much of my other games either, mostly logging in for daily bonuses and that’s it.
Danni

Week 28 Review

Danni, Gaming, M.E., Physical Disability, Real Life, Week in Review

Danni smiling with clean hair.

I had a proper hair wash so celebrated with a photo 🙂

Was mostly a good week. Was still on a high from seeing Sammie, and when I was awake I felt up to watching lots of stuff, like football, Netflix and YouTube. I had some anxiety as the care home for respite didn’t get sorted out until Thursday, and I was struggling to modify my care information booklet to make it suitable for staying there instead of having home carers (as they’ll need to do more stuff and they don’t need to be at set times with 24 hour staff).

Was a little annoying that I felt up to going out and doing things but I needed to save my energy for travelling to the care home. On the Monday though I had a hug from Johan, which was well worth the pain it caused.

  • Overall mood – Awesome/Good, mostly normal level of symptoms
  • Average daily sleep – 9 hours 17 minutes
  • Longest sleep – 15 hours 41 minutes from Saturday morning to Sunday morning (deep sleep 61%)
  • Clothes changed – 1
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 1 (and it was a proper one with water and shampoo!)
  • Books read – Started This is True book 1
  • TV watched – Lots, including football (France beating Belgium, Croatia beating England), Steven Universe and Ultimate Beastmaster on Netflix
  • YouTube videos watched – Too many to list
  • Streams watched – Playerunknown’s Battlegrounds and Fortnite on Twitch and Rockhopper Penguin Cam
  • Music listened to –0
  • Podcasts listened to – Welcome to Night Vale episodes 40 and 41
  • Blog posts written – 1
  • Penguins cuddled –  Yes 🐧🐧🐧
  • Johan hand holds – Lots
  • Johan hugs – Yes! A big one on Monday!
  • Time on Twitter – 2 hours 5 minutes (average 17 minutes a day)
  • Time on Reddit – 18 hours 10 minutes (average 2 hours 35 minute a day)
  • Time on Facebook – 9 minutes (average 1 minute a day)
  • Other –
    • Really happy to be well enough to watch stuff again. I have a lot to catch up on.
    • Johan hugs are awesome.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 112
  • Godville Heroine Level – 56 (42% done)
  • Godville wood for ark – 31.7%
  • Godville savings – 1 million, 332 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (25 hours 6 minutes, average 3 hours 35 minutes a day)
  • Other –
    • Played a ton of Animal Crossing to complete the Dappledot event. Managed to do so a day early.
    • Tried to return as many Dappledots as possible to friends who sent them, but there were just too many.
    • Finally finished a cross stitch while listening to Welcome to Night Vale.
Danni

Week 27 Review

Danni, Gaming, M.E., Physical Disability, Real Life, Week in Review

Danni is lying in bed, sticking their tongue out while holding a Fab ice lolly in a red holder.

I remembered to take a photo this week! I was talking to Sammie and Johan while on the Surface and took this photo to show off my ice lolly. It made sense in context.

This week has been really hot. Luckily my bedroom is sheltered from the sun, so I’ve been fine with just my window open (and ear plugs to cope with the increased noise). I do have a fan but I’ve not needed it yet.

Health-wise it’s been an up and down week. Other than a couple of migraines (I think I might need to investigate why they’re becoming more common) I’ve not been too bad so long as I don’t move much. By the end of the week I could even move a bit without agony, which was great. The migraines were not fun though, and I also had sleep paralysis that meant I needed Johan to come home early as I couldn’t move while the carer was here.

As I was okay with light and sound for me, I watched a lot of stuff on the telly. Mostly football, but also some YouTube videos. I’m happy that England got through to the semi finals of the World Cup, though as Sweden were my second team I was a bit sad they lost. The other games I mostly had on in the background while working on other stuff, as I wasn’t as invested in them.

Most of the good stuff of the week happened at the end of it. The big one is on Saturday I saw Sammie! She is towering over Johan now, and if she’s not as tall as me yet then it won’t be long. She came over as Johan was taking her to a gaming exhibition in Newcastle that is there as part of the Great Exhibition of the North. They both said they enjoyed it, and I gave Johan some money so they could get food afterwards. I would have liked to go myself, but I wasn’t well enough.

The current idea is for Johan to take Sammie to other places I would if I were well enough, especially the more active ones, but I hope to join them for the more accessible outings if well enough. Will need to check with everyone involved first, and Johan is off to Sweden in a couple of weeks so we’ll look into it more when he gets back.

We got a brown envelope of doom from the DWP, but luckily it was a positive one: I’m staying in the ESA support group without needing a work capability assessment. I didn’t see the form Johan filled in (as he’s my appointee and it’s too much for me) but he must have done a good job. My money is sorted at least for now, which is a big relief.

Sunday morning Johan ran the Great North 10K, and even though it was really hot he ran a personal best, finishing in less than 41 minutes and coming 77th out of 4487 finishers. He’s really happy and I’m very proud of him. There was also a picture of the Running Ninjas on the local newspaper website that was awesome. I was recovering from Saturday so he was able to stay out with his friends for a bit afterwards (the afternoon care call helps with that).

I spent some time this week working on adapting my care instruction book for when I’m in the care home. Unfortunately the care home we hoped I’d go to hasn’t confirmed they have the room for me yet, so I’m getting nervous as I’m meant to be going in just over a week. If they can’t take me I have a couple of alternatives we can ask, but they’re a bit further away which isn’t great for me. I’m sure it’ll get sorted in time, I just don’t like the uncertainty.

Next week is mostly going to be preparing for going into the care home and Johan going to Sweden. Johan has joined a group to do Relay for Life at the weekend but we don’t know what times yet (he can’t stay all day because of me). There’s also more football which I’m looking forward to, especially the England game.

  • Overall mood – Good/Awesome at the weekend. Mixture of high and normal symptoms depending on the day.
  • Average daily sleep – 10 hours 11 minutes
  • Longest sleep – 14 hours 41 minutes from Wednesday morning to Wednesday afternoon (deep sleep 64%)
  • Clothes changed – 2 (One Day I’ll Take Over The Planet penguin top on Monday, Zen penguin’s guide to hoppiness and purple loose trousers on Saturday)
  • Wipe wash – 2
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched – Lots of football
  • YouTube videos watched – Tom Scott, Jessica Out of the Closet, vlogbrothers, hankschannel, Mr Puzzle and standupmaths.
  • Streams watched – Rockhopper Penguin Cam
  • Music listened to – None deliberately, but I heard a lot of Three Lions being sung.
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Dozens
  • Johan hugs – 0, but 2 Sammie hugs!
  • Time on Twitter – 6 hours 10 minutes (average 52 minutes a day)
  • Time on Reddit – 28 hours (average 4 hours 1 minute a day)
  • Time on Facebook – 26 minutes (average 3 minutes a day)
  • Other –
    • My bed has been fixed! Just had the controller replaced and a lock added so the carers can’t pull it out again.
    • New upstairs neighbours get very shouty sometimes. I do not like. I was hoping we were over that after the last shouty neighbours were gone (though I don’t want them murdered).
    • Sammie is super awesome! She had a “rant” about how much she loves her family. It was amazing.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 111
  • Godville Heroine Level – 56 (11% done)
  • Godville wood for ark – 30.9%
  • Godville savings – 1 million, 281 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (13 hours 41 minutes, average 1 hour 57 minutes a day)
  • Other –
    • I keep meaning to do more cross stitch but forgetting. Maybe this week.
    • Just managed to get the gold fishing trophy in Animal Crossing but didn’t complete it.
    • There was a big update in Animal Crossing. Now animals can get to level 25. There are also some UI changes that make things a bit easier but I still need my spreadsheet to track things.
    • New flower event started on Friday. This time it’s collecting Dappledots from sunflowers. I’m doing okay with it, but the second half is usually much harder.
Danni

Week 26 Review

Danni, M.E., Physical Disability, Real Life, Week in Review

Note to self: Ask Johan to take a photo this week.

Spent most of the week either sleeping or watching stuff on the telly. Lots of football, lots of YouTube, and even a film. Still not completely over the payback from the shower, though movement is definitely worse than sensory stuff right now.

Tuesday was the best day- I woke up really early and needed Johan to sort me out, but we decided to stay up at that point. Johan went out and ran a half marathon about 4.30am, I got McDonalds delivered for breakfast (I wanted a cheese and egg McMuffin, which I got), and then we watched Deadpool together, which was awesome. Also had the cleaner visit, someone from the care agency with a new care plan (same as the old one but different folder), then slept all afternoon.

On Thursday I watched Doctor Who (I’m slowly getting through last year’s episodes) and saw England beat Belgium in the World Cup. I don’t like how overpaid footballers are, but do like watching it, especially with Johan so we can talk about the different hair, shoes, and the large amount of rugby tackles (seriously, what is up with the amount of rugby or wrestling tackles this tournament? Footy is meant to be a non-contact sport!).

Saturday I spoke to Sammie and one of her friends, helping out with internet stuff. Sammie’s friend said Johan and I are cool, which made me feel really good. Sunday I was watching more footy, but partway through the second game I got a horrible migraine so had to turn all the lights off and stop watching. I should have realised it was coming as I get a weird smell as an aura beforehand, but as my window is open I thought it was real.

My bed has completely stopped working, and Johan is attempting to get equipment services to fix it. They were on training when he phoned which didn’t help. Luckily it’s not completely on the floor and it’s level so it’s not as bad as it could be, but with how much I’m struggling to move at the moment I hope it’s fixed soon so I can sit myself up a bit and the care workers can raise it to make giving me personal care easier.

  • Overall mood – Good, but high symptoms, especially when moving (and had the migraine).
  • Average daily sleep – 11 hours 14 minutes
  • Longest sleep –  21 hours 21 minutes from Monday morning to Monday evening (deep sleep 56%)
  • Clothes changed – 1 (Orange Boy Fan Club)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1 (Shampoo Cap)
  • Books read – 0
  • TV watched – Lots of footy and Doctor Who Series 10 Episode 2
  • YouTube videos watched – Lots and lots
  • Streams watched – Rockhopper Penguin Cam
  • Films watched – Deadpool
  • Music listened to – 0
  • Podcasts listened to – 0
  • Blog posts written – 2
  • Penguins cuddled –  Lots, especially Nicky, Phoebe and Poseidon🐧🐧🐧
  • Johan hand holds – Tons 🙂
  • Johan hugs – Not yet. Will be well enough soon I hope
  • Time on Twitter – 2 hours 5 minutes (average 17 minutes a day)
  • Time on Reddit – 22 hours 52 minutes (average 3 hours 16 minutes a day)
  • Time on Facebook – 22 minutes (on Tuesday)
  • Other –
    • Really happy to be well enough to watch things now.
    • Even better when Johan can watch with me 🙂 He steals my wheelchair. Wish it could be all the time but eventually having him in here is too much for my body.
    • Sammie is awesome. Her friends seem cool too 🙂
    • I love being well enough to go on the Surface. So much easier to type on than my Android tablet.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 110
  • Godville Heroine Level – 55 (77% done)
  • Godville wood for ark – 28.9%
  • Godville savings – 1 million, 231 thousand
  • Cross stitch completed – 0 (just done a small amount)
  • Most played game – Animal Crossing Pocket Camp (9 hours 34 minutes, average 1 hour 22 minutes a day)
  • Other –
    • The third fishing tournament has started in Animal Crossing. I don’t think I’m gonna get all the items this time as I haven’t played enough.
    • Barely been on my other games as been watching telly instead.