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 10 Review

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

Danni is lying on their side in bed. They look ill.

Danni is lying in bed in their back. They are smiling. The image is tinted purple from a light behind the bed.

A week late due to not being very well. The week was rather mixed, with good bits and bad bits. Photos by Johan as he was testing his new phone camera – the first I’m feeling completely rubbish and the second a bit less rubbish and happy because of Sammie.

Good bits included Esther visiting, having pies for pie week, Sammie being awesome and spending time with Johan. Bad bits were mostly being more ill than normal, needing my antiemetic more than I usually do and having a lot of pain that was difficult to deal with. I also missed a CFS team visit as Johan forgot to put it in the calendar and I can’t open the door.

Seeing Esther on the Saturday was awesome. She’s moving next month so it’ll probably be a while before I see her again, but it was a lot of fun talking to her and hearing her plans. I really hope everything goes well for her.

Sammie showed us some of her pictures, which I really like. She’s definitely improving which is awesome. She sent me a present for Mothering Sunday which made me happy. I refused to open it on Saturday, but did so on Sunday and ended up crying with happiness as I loved it that much. I could tell she’d put a lot of thought into it. I’m really proud of her.

  • Overall mood – Good (a few mehs and an Awesome on Sunday)
  • Average daily sleep – 7 hours 25 minutes (of 9 hours 32 minutes)
  • Longest sleep – 12 hours 14 minutes from Friday evening to Saturday afternoon (of 17 hours 16 minutes)
  • Clothes changed – 1 (Purple t-shirt with penguin riding a dinosaur and cat fleece)
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – 0
  • Streams watched – 0
  • Music listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – indeed 🐧🐧🐧
  • Johan hand holds – yes
  • Johan hugs – nope
  • Time on Twitter – 11 hours 53 minutes (average 1 hour 41 minutes a day)
  • Time on Reddit – 16 hours 47 minutes (average 2 hours 23 minutes a day)
  • Time on Facebook – 1 hours 5 minutes (average 9 minutes a day)
  • Other –
    • Managed 3 meals on Monday. This was an achievement.
    • By Tuesday morning I was regretting it.
    • Needed extra meds a few times. I hate how I feel when I’ve taken them but it’s preferable to being in intolerable pain and throwing up.
    • Had Esther handhold while she was here as not well enough for hug.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 80
  • Godville Heroine Level – 50 (46% done)
  • Godville wood for ark – 10.6%
  • Godville savings – 502 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (15 hours 31 minutes, average 2 hours 13 minutes a day)
  • Other –
    • Finished the Animal Crossing ladybird event with a day to go. My in game friends are awesome.
    • New Easter event in DragonVale. I’m playing it every few days.
    • Swapped to Mother’s Day cross stitch patterns for a bit.
Danni

Week 9 Review

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

Danni is lying in bed, with a dark blue scarf with penguins on wrapped around their head and lower face. The photo is tinged purple from the light.

We got a lot of snow this week. I got my curtain pulled back so I could watch it falling, and it was very pretty. I had forgotten that my body really doesn’t like the weather changing, so I’ve been extra fatigued and hurty all week. I was glad to stay in bed with my heated blanket and penguins. Photo is from Sunday, where I was feeling bleh so covered my head with my scarf. It helped a bit.

Wednesday wasn’t good. Not only did the wrong care worker come for my lunchtime call, she was 40 minutes early and I hadn’t been told it had changed. It took me years to be okay with the expected care worker being 15 minutes early, so this was too much. Ended up having a meltdown which was not good. She was also calling me lovey and honey which I hate even on a good day. One of the better care workers contacted the agency for me and told them I really need to be informed of all changes and that I didn’t want that particular care worker again.

Afterwards I was really drained, but Sammie sent me pictures of a snow cat I asked her to make and I found an easier method to watch the Edinburgh Zoo penguin cam so I was okay again in the end, though it made me even more tired for a few days, and definitely ruined any chance of getting out off bed.

Still been trying to catch up with YouTube now I’m able to watch it, in between sleeping. Johan decided to go into Newcastle as normal because routine is good, and even went running in the snow a couple of times, once at night, because he’s silly. During the early hours of Sunday morning I had a rather bad accident requiring a wash and bedding change among other things, and I’ve needed more help than normal in general so Johan really earned his £62.70. My first increased PIP payment came in so I actually feel it’s real now. I bought a new purple Trabasack as despite having several they keep going missing when I need them. This one has a wipe clean surface so will be better for meals than the ones with the velcro top. I just need to figure out the best place to keep it so it doesn’t go missing and people can grab it when I need it.

Next week I’m hoping my body will get back to normal, and overall things will be calmer. I especially hope I need less middle of the night changes (maybe I’ll even sleep at night!).

  • Overall mood – Good, with a bad (Wednesday) and a meh (Sunday as I’d missed a dose of painkillers without realising)
  • Average daily sleep – 6 hours 50 minutes (of 9 hours 5 minutes)
  • Longest sleep – 9 hours 53 minutes from Saturday morning to early Sunday morning (of 14 hours 29 minutes)
  • Clothes changed – 1 (Zen Penguin’s Guide to Hoppiness and cat fleece)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0
  • Books read – The Wall (27%)
  • TV watched – 0
  • YouTube videos watched – Tom Scott, Vi Hart, vlogbrothers (I’m caught up on the most recent stuff)
  • Streams watched – Edinburgh Zoo Penguin Cam
  • Music listened to – Tangled Soundtrack
  • Blog posts written – 1
  • Penguins cuddled – yes 🐧🐧🐧
  • Johan hand holds – indeed
  • Johan hugs – nope
  • Time on Twitter – 10 hours 26 minutes (average 1 hour 29 minutes a day)
  • Time on Reddit – 20 hours 46 minutes (average 2 hours 58 minutes a day)
  • Time on Facebook – 2 hours 55 minutes (average 25 minutes a day)
  • Other –
    • Chatting online is fun but exhausting
    • Snow is pretty to watch
    • Penguins are always good

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 78
  • Godville Heroine Level – 50 (15% done)
  • Godville wood for ark – 9.6%
  • Godville savings – 457 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (18 hours 35 minutes, average 2 hours 39 minutes a day)
  • Other –
    • There’s another flower event in Animal Crossing. This one involves catching ladybirds.
    • I have the same problem as I normally do of people sharing lots of ladybirds with me but I’m not able up to share them all back as there are too many people.
    • I completed the first part of the event. I’m not sure if I’ll be able to complete the second part without using leaf tickets (premium currency) but waiting until the last day to be sure.
    • I have added a new part to my spreadsheet to track ladybirds. I wish I could remember how to use conditional formatting and better formulas.
    • My Godville Heroine is 1 year old! Definitely the best game when I’m not well.
Danni

Week 8 Review

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

Danni is lying in bed. The image has been edited with various filters, making it look smooth, have bigger eyes, has colourful circles around their head, and has a hand drawn purple penguin in the bottom left corner.

I forgot to take a photo last week, so took this one today and used the most extreme settings on various filters to see how it looked. Then I drew a penguin on it because penguins! 🐧

Last week was mixed. Some good stuff (going on the Surface and video chatting to Sammie, making a hexahexaflexagon) and some bad stuff (waking up to a strange care worker in my room when I’d been expecting a regular one and had no notice of the change, digestive system being so evil I couldn’t be touched by the care workers during a call as was in too much pain).

The big news was I got my new PIP letter and the back payment of everything they owed me for the last year. I gave some to Johan as a Christmas/birthday present, cleared half of my credit card (0% interest so no point in clearing it all right now) and put half into savings. With the remainder, I bought a Nintendo Switch, some cool t-shirts and stickers, some disability stuff I’d been putting off and bought a celebration takeaway from Portofino in Newcastle, which was the best pasta I’ve ever had (tagliatelle carbonara). I still have some sitting in my bank account that I’m sure I’ll find a good use for.

I have started work on trying to fix my blog. I’m not happy with the theme or the header image yet, but at least it’s not throwing up errors now. I need to figure out getting the accessibility buttons to work properly as well. It’s too difficult to do from my tablet so it’ll be done in bits when I’m on the Surface or my puter.

I was finally well enough to catch up properly on some of my YouTube subscriptions, the ones without too much movement in the videos. I’ve got 3 months worth of videos to catch up with, so far managing three channels. I also rediscovered Vi Hart and made a hexahexaflexagon, which was an awesome stim toy until I ripped it. I need Johan to cut me out another template so I can make a new one. I want a cloth flexagon of some type, but I can’t find any premade online so might need to find a crafty person to make me one.

I’ve started clearing out my chest of drawers, throwing away anything damaged and putting stuff I can’t wear into a vacuum bag. The plan is to reorganise my drawers so the most used clothes (tops and nighties) are most accessible. I do need to get the cleaner to stop piling stuff around it so we can get into the drawers. I’m looking into finding someone to help me organise my bedroom, as though the cleaner is excellent at cleaning and okay at tidying, she is not good at organising or using space efficiently. It’ll probably take an organised person an hour or two to sort in total, but it’s finding that person. I did have a care worker who was excellent at it so I was going to ask her, but she’s injured and I don’t know when or if she’ll be back at work.

This week we’re expecting a lot of snow. Since that means I can’t go out, I’m hoping if well enough to do something nice indoors, or even have a shower. We’ll see if my body agrees.

  • Overall mood – Good
  • Average daily sleep – 8 hours 40 minutes (of 10 hours 54 minutes)
  • Longest sleep – 11 hours 4 minutes on Saturday (of 17 hours 35 minutes, after being awake 28 hours 30 minutes from Thursday evening)
  • Clothes changed – 1 (Penguin made of penguins 🐧)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1 (shampoo cap)
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – Lots (Matt and Tom Park Bench, vlogbrothers, floppotron, Vi Hart)
  • Music listened to – Floppotron
  • Blog posts written – 1
  • Penguins cuddled – Yup 🐧🐧🐧
  • Johan hand holds – Several a day
  • Johan hugs – 0
  • Time on Twitter – 13 hours 52 minutes (average 1 hour 58 minutes a day)
  • Time on Reddit – 16 hours 25 minutes (average 2 hours 20 minutes a day)
  • Time on Facebook – 21 minutes (average 3 minutes a day)
  • Other –
    • PIP award letter and back payment came through!
    • Discovered the joys of flexagons, and how awesome hexahexaflexagon is to say.
    • Johan accidently dyed the washing purple. I now have purple penguin pillowcases.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 76
  • Godville Heroine Level – 49 (79% done)
  • Godville wood for ark – 8.7%
  • Godville savings – 412 thousand
  • Cross stitch completed – 3
  • Most played game – Animal Crossing: Pocket Camp (14 hours 4 minutes, average 2 hours a day)
  • Other –
    • DragonVale event has finished, so am now taking a break.
    • Animal Crossing has finished the crystal event.
    • I finished getting all the blue tulip items in Animal Crossing so now I’m concentrating on purple tulips.
    • I’ve yet to really try the Switch (have slept a lot since buying it) but I’m hoping to be able to play on it. If not, Johan will have to play for me.
Danni

Week 7 Review

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

Danni is lying in bed and smiling. The image has a dark blueish hue.

It’s mostly been an uneventful week. Had flu jab on Tuesday, so have had a sore arm since (it’s nearly better now), but otherwise not been up to much. I finally got over the payback from going out to the tribunal, and on Friday I was able to go on my desktop computer for the first time in months. Did a food shop and updated the spreadsheet tracking which carers I have. It took a lot longer than it should have done as I’ve forgotten how to do things like link to data in a different part of the spreadsheet.

I made the mistake on Saturday morning of attempting to change my own pad while Johan was out. This was a terrible idea and now I’ve got payback from that. I think I’ve learnt my lesson. Picture is a selfie taken while watching my projector, so the light was blue.

  • Overall mood – Good
  • Average daily sleep – 8 hours 50 minutes (of 9 hours 51 minutes)
  • Longest sleep – 9 hours 25 minutes from Tuesday evening to Wednesday morning (of 13 hours 11 minutes)
  • Clothes changed – 1 (space penguins and cat fleecy top)
  • Wipe wash – 1 (Johan helped)
  • Water wash – 0
  • Hair wash – 1 (with shower cap)
  • Books read – 0
  • TV watched – 0 (I prioritised going on puter)
  • YouTube videos watched – 5
  • Music listened to – Mr Voletron (U R Bad Toys!)
  • Blog posts written – 1
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Yes
  • Johan hugs – 0
  • Time on Twitter – 12 hours 28 minutes (average 1 hours 46 minutes a day)
  • Time on Reddit – 26 hours (average 3 hours 42 minutes a day)
  • Time on Facebook – 14 minutes (average 2 minutes a day)
  • Other –
    • Left my party in Habitica, and made my own. Want to do quests by myself for a bit.
    • Doing a food shop is exhausting, even when I’m on my computer so it automatically fills in forms and stuff.
    • Johan changed my bedding on Thursday! Currently have the My Little Pony set on.
    • It was half term so chatted to Sammie a bit. She’s awesome.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 75
  • Godville Heroine Level – 49 (35% done)
  • Godville wood for ark – 7.3%
  • Godville savings – 382 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (14 hours 4 minutes, average 2 hours a day)
  • Other –
    • New crystal event in Animal Crossing. Luckily it’s just a collection event so I don’t need to do much extra.
    • Got every dragon and egg in DragonVale again. Once the rose event is over I’ll probably stop playing daily.
    • Bonus image: the cross stitch I was working on last week, completed. The text is amusing to me (your text here)

Image is a virtual cross stitch of a colourful temple with various spires, underneath which it says

Danni

Week 6 Review

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

Danni is lying in bed wearing a purple penguin hat and sticking their tongue out.

I think I’m going to change the day for these posts to Monday, so I get the full week’s data. Picture is of me the morning of my PIP tribunal. I’m still happy we won, just annoyed I had to go as we gave enough evidence for them to make the correct decision in the first place. I now have payback from that so feel rather rotten, but it was expected and we prepared so it’s not as bad as it could be. Tomorrow I’m meant to be getting my flu jab (better late than never) which I’m not looking forward to but since flu is what triggered my ME I know how important it is. I’m wanting to watch the Olympics as soon as I’m well enough. I’m probably missing out lots of things but brain is very muddy.

  • Overall mood – Good (though Tuesday and Wednesday were awesome)
  • Average daily sleep – 6 hours 31 minutes (of 10 hours 8 minutes)
  • Longest sleep – 14 hours 52 minutes on Thursday (of 19 hours 21 minutes – the crash at the start of payback)
  • Clothes changed – 1 (added socks, shoes and pyjama bottoms to go to tribunal, then took them all off and changed into my nerdy penguin top when I got back into bed.)
  • Wipe wash – 0 (I really need one when over this payback)
  • Water wash – 0
  • Hair wash – 0
  • Books read – 1 – The Island
  • TV watched – 0
  • YouTube videos watched – 0
  • Music listened to – 0
  • Blog posts written – 2
  • Penguins cuddled – nearly enough 🐧🐧🐧
  • Johan hand holds – some (hands hurt for a couple of days after pushing wheelchair)
  • Johan hugs – 1 (is easier while I’m in my wheelchair)
  • Time on Twitter – 13 hours 56 minutes (average 1 hour 59 minutes a day)
  • Time on Reddit – 25 hours 20 minutes (average 3 hours 37 minutes a day)
  • Time on Facebook – 23 minutes (average 3 minutes a day)
  • Other –
    • We won my PIP tribunal!
    • Snow is awesome but not good for wheelchairs
    • Payback isn’t fun but easier to deal with when expected
    • I really don’t cope well with unexpected change during payback. Panicked over different carers twice, even when Johan was here. If I’d been told it would have been okay.
    • I need to change the theme on this blog as this one no longer works properly. I need to be on the Surface or my computer for that though.
    • Penguins are awesome. 🐧🐧🐧🐧🐧

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 73
  • Godville Heroine Level – 48 (94% done)
  • Godville wood for ark – 6.4%
  • Godville savings – 336 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing: Pocket Camp ( 12 hours 14 minutes, average 1 hour 44 minutes a day)
  • Other –
    • Finished catching all the bats needed a day before the end of the event in Animal Crossing. It was much easier than the last one.
    • Now there’s no event I’m only playing a couple of times a day.
    • Currently working on getting blue tulips and levelling animals.
    • Now have 8 animals at level 20.
    • I’ve been levelling up the Hip amenities. Now on the first tier 3 amenity, after which I can go back to the others I need to level.
    • Chose pixel pictures as my next set in Cross Stitch. The one I’m working on now makes me think some of the images may not be original work…