Category: Autism

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 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…
Danni

PIP Tribunal

Autism, Danni, M.E., Mental Health, Physical Disability, Real Life

TL;DR: Got enhanced daily living, enhanced mobility PIP until December 2020. We won.

Today was not the nicest day for travel, being cold and snowing. Hot water bottle and hand warmer were much needed, along with winter weather stuff. Got there 15 minutes early, which is good going for us, especially as Johan had to push me (the hardest bit being unavoidable no matter how we travelled). When we arrived they were reviewing the evidence, which Johan had read and I kinda knew the existence of (being too ill to read most of it myself). Got called in not long after.

The tribunal itself went fine. They asked that I answered the questions if possible, but Johan could take over if needed and was given time to add to my answers. They were only concentrating on a couple of descriptors as we provided so much evidence. Some questioning about my DLA history as that wasn’t provided by the DWP (and Johan didn’t know it all as some was before he knew me). Mostly questions on mobility and using my shower chair/washing. I was struggling near the end but they asked Johan to add anything he wanted and then we were asked to leave while they discussed it (though I told Johan I was boaty and then had to describe what that meant for the record – dizzy and like everything is moving). The tribunal panel were nice and understanding, which probably helped me be able to contribute so much.

During the wait I had my eye mask on while Johan was going on about how it was the hardest bit. Not long after we were called in and told the decision. Being told that they only changed the points in a few of the descriptors because they stopped at 12 was pretty awesome. I’m now on enhanced daily living and enhanced mobility, going from standard daily living and no mobility, so it’s a big change. My reassessment date is December 2020, which is fair enough as my condition has changed quite a bit in the last few years (mostly for the worse, but I’m optimistic that’ll it be better soon).

Getting home was interesting. The snow was heavier and was sticking more, which is not ideal for wheelchairs. The hardest part was the ramp going from the street up to the ramp to the front door – it’s hard on a good day because it’s so steep, and with no grip it’s horrendous. I ended up helping to push to get through the worst of it, as without the wheels were just slipping and we were making no progress. I was scared we’d have to contact someone to help (no idea who), but between us we made it until Johan could manage by himself again.

Once home, back in bed and mostly sorted, Johan read the tribunal report to me. A couple of the changed descriptors still aren’t entirely accurate, but I got enough points so don’t care. I’ll need to eat and calm down before I can rest as I’m running on adrenaline, but I’m very happy.

I know I’m going to pay for today soon (especially the wheelchair pushing) but it was definitely worth it. It would have been much harder for me mentally to not be there, so worth any payback I get. Hopefully it’ll stop the nightmares that I’ll get it all taken away at least for a bit.

We fought the DWP and we won.

Danni

Week 4 Review

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

Danni is lying in bed with a massive smile on their face. On their shoulder there is Poseidon, a baby emperor penguin.

This week has been pretty good overall. I’ve been on a huge high from going in the living room last week. Thursday was Johan’s 29th birthday, and though I’ve not managed to sort his presents out properly yet I think he had a good day. On Friday we got a takeaway to celebrate and I had a yorkshire pudding wrap with pulled pork in the middle. It was very nommy.

The only downside is I tried to do a food shop on Tuesday and I got so overwhelmed my brain broke. For a few days afterwards I couldn’t really make decisions without a lot of help, and felt really out of it and foggy. I think I’m getting over it now. I keep forgetting that cognitive stuff can be just as exhausting and blehness making as physical stuff. It didn’t stop me being happy but it did make me need a lot more rest and help than I otherwise might have done. I think next time it might be better for Johan to do it (as that happened despite having a shopping list – not being able to find out what we already have in makes it a lot harder, but even trying to work out what was better value was too hard).

On Monday I read Fahrenheit 451. I’m not sure I really understood it but it was good. I’d like to read it again at some point when my brain works a bit better. Since then I’ve been reading stuff on the SCP Foundation website (and on the SCP subreddit). It doesn’t matter that I can’t understand a lot of it, but it was good for when by brain was broken (even if I did keep reading the same ones over and over again because I forgot I’d already read it until I got near the end).

Sammie got hit by the Malwarebytes update problem yesterday. Unfortunately I was half asleep when trying to help her (I woke up to roll over and have a drink and noticed the chat) so didn’t get her to check the task manager which would have revealed this. I guess resetting Windows 10 isn’t the worst thing in the world. Luckily she was able to backup everything she wanted to keep, and she was glad to hear this morning that it wasn’t her fault.

I bought a new electric throw/blanket as the one I wanted was finally available on Amazon. I have one I got a few years ago but the material felt horrible and even putting a duvet cover on it didn’t help much. This one is fleecy and though it’s an ugly brown it works and is small and light enough for me to use by myself. I just need to figure out how to stop knocking the buttons on the controller in my sleep as they’re very sensitive. I also got new penguin towels which are cute. I’m hoping they don’t go missing as much as the other towels we have.

  • Overall mood – Awesome
  • Average daily sleep – 7 hours 56 minutes (of 9 hours 48 minutes)
  • Longest sleep – 10 hours from Tuesday afternoon to Wednesday morning (of 13 hours 47 minutes)
  • Clothes changed – 1 (Zen penguins guide to hoppiness, due to accident as was too ill really)
  • Wipe wash – 0 (only had underarms done when changing top – too ill for anything else)
  • Water wash – 0
  • Hair wash – 1, with shampoo cap.
  • Books read – 1 (Fahrenheit 451 by Ray Bradbury)
  • TV watched – 0
  • YouTube videos watched – 2 – Corgi in an elevator and Newsthump card game.
  • Music listened to – Steven Universe songs, Moonlight Shadow.
  • Blog posts written (including this) – 1
  • Penguins cuddled – plenty 🐧🐧🐧
  • Johan hand holds – tons
  • Johan hugs – 1 on his birthday 🙂
  • Time on Twitter – 3 hours 56 minutes (average 34 minutes a day)
  • Time on Reddit – 25 hours 54 minutes (average 3 hours 48 minutes a day)
  • Time on Facebook – 51 minutes (average 7 minutes a day)
  • Other –
    • Johan is now 29!
    • Johan ran to Scotland this morning. It was 10 kilometres from Carlisle to Gretna Green.
    • We only needed 1 extra care call for Johan going to Scotland. Knowing the care agency will respond in an emergency makes a massive difference.
    • Electric blanket is awesome! It doesn’t completely replace heaty penguins and hot water bottle, but it does mean I don’t need them heating as often.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 67
  • Godville Heroine Level – 48 (5% done)
  • Godville wood for ark – 4.1%
  • Godville savings – 220 thousand
  • Cross stitch completed – 3
  • Most played game – Animal Crossing: Pocket Camp (16 hours 6 minutes, average 2 hours 21 minutes a day)
  • Other –
    • Managed to finish the second half of the butterfly event in Animal Crossing: Pocket Camp with about an hour left to go. I was incredibly lucky and had some very generous friends in game.
    • Much preferring the Winter Sports Event. I got one of everything within two days, including getting the Snow Park amenity to level 2. I’ve just finished building my eighth mini skate rink and any extra snowflakes from now on will go on more tiaras.
    • DragonVale released an update with extra levels an islands to get. Break postponed until I get them all.