Week 8 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.

Week 6 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…

PIP Tribunal

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.

Week 4 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 problemΒ 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 451Β 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 πŸ™‚
  • 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.

Happy New Year!

I hope everyone had a good Christmas/holiday period, and that this year is better than the last.

I’m still not doing amazingly. Caught another cold before I’d recovered from the last one, so haven’t got out of bed since the Great North Run in September. Despite this, I had a lovely Christmas, and was thoroughly spoilt.

Johan bought me this amazing purple glittery crystal thing, that is sparkly. I’m hoping to find somewhere to put it that has a light shining on it so I can see it properly. He also got me some sheets which is very practical when bed bound πŸ˜›

Sammie came over on Christmas Eve, which was the best present from her, especially the hug. She also brought me gifts, a wall sticker of some penguins swimming through a port hole, and this huge penguin cushion that’s also a hand warmer. She got Johan (now also called Dad2) a t-shirt saying “I am currently unsupervised. I know, it scares me too, but the possibilities are endless!”. Both of us were extremely happy. Sammie’s grandparents gave me a chocolate penguin and chocolate smashable igloo, and Johan some running socks. That was awesome of them 😊

My mum gave us a pod coffee machine. As Johan has now started drinking coffee, this is very much appreciated. If also does hot chocolate so I’ll be able to use it too. Other gifts included a hot chocolate mix and some star decorations from friends (and I think there were others I can’t recall right now). I’m grateful for all of them, and along with the many cards I received feel very loved.

Christmas day I spent time video chatting Sammie, which is always good. Johan made Christmas dinner, which was roast duck, his amazing roast potatoes (even better this year!) and the trimmings. I managed to stay awake to eat it, and also watched the Doctor Who Christmas special with Johan. Loved the episode, and it makes me want to catch up with the last series (I’d only got up to the 2016 Christmas special before). I may not have been able to get out of bed, but it was awesome.

Boxing day the payback from the last few days hit, so I spent most of the day asleep or resting. I did manage to message Sammie to wish her a happy birthday (she’s 14 now, which is kinda scary) and I think she liked the presents we got her. That’s pretty much how I spent the rest of the week, though on the Saturday Johan went to South Shields to run his 50th Parkrun, which also took him to 1000 miles ran in 2017. An awesome achievement, which I slept through so he went for breakfast and cake with his running friends.

New Years Eve I woke up in the evening, and just before midnight put the telly on to watch the London fireworks and spoke to Sammie through messenger. The fireworks were awesome to watch, even though I’m torn on whether it’s a good thing or not. Once they finished the telly went back off as it was a bit much for me, but I’m glad I got to see the pretties and virtually celebrate with Sammie.

Payback is hard to deal with, as it makes all my normal symptoms much worse and adds in new ones which isn’t great, especially when I’m already in relapse from the successive colds. It’s a lot easier to deal with though when it’s due to doing something nice. I know that with rest and patience it will pass, and hopefully I’ll be able to get out of bed and do stuff again.

Since my last blog post I bought a new Android tablet, as my old Galaxy Tab S was freezing, randomly rebooting and generally being less reliable. It had lasted 3 years including many drops and falls, so I’m happy with that. I replaced it with a Google Pixel C, which is much faster. I also bought a chunky case for it immediately, to protect it from the inevitable drops and to make it much easier to hold.

As my new tablet went on sale the day I bought it, I used some of the money I saved to buy a Google Home Mini. Within a couple of hours of playing with it, Johan wanted one so we now have two. I already had wifi plug sockets that I could control, then on Black Friday the Philips Hue starter set I’ve been eying up for years was reduced to its lowest ever price, so I grabbed that. I have one bulb in my bedroom (currently in the lamp clipped on the back of my bed) and Johan put the other two in the living room and his room. Though it doesn’t always understand what we’re saying, being able to control the lights with our voices (including my text to speech if I’m nonverbal) is amazing, and I’ve set up custom phrases to set my light to purple, make my light change colours and such. It’s also good for reminders and simple searches when I’m not wanting to leave the app I’m using on my tablet.

Our Christmas tree from last year ended up being broken, so it’s been replaced with a black fibre optic one. Johan is very happy that he didn’t need to set up lights, and I’m happy because they’re twinkling slowly enough to not make me worse and aren’t too bright. We plugged it into one of the the WiFi plugs so I can turn them on and off by myself (including using the Home Mini) and this year it was fully decorated for an entire 10 minutes! Then the penguin on the top fell off. For next year we’ll either need to get a better penguin topper or a way to secure the penguin on there, but even without it’s very pretty.

Below is my game stuff which I know is more boring πŸ˜›

I still miss World of Warcraft, but I’ve only been able to go on my computer a couple of times in the last couple of months, and on the surface not much more than that. I’m hoping once I get out of my relapse I’ll be able to resubscribe and play again.

For now I’m sticking with my tablet games. The main one I’m playing right now is Animal Crossing Pocket Camp. It’s perfect for me, as I couldn’t use the controls to play the full version on the DS, and it’s simplified so it works even when I’m very foggy. At the moment I’m level 56 (of 64), have invited all the animals to my camp, have 2 of 5 top tier amenities (which let me level up the corresponding animals to 20), and have one of every is of flower in the garden. There’s still plenty for me to do, but I can spend only a few minutes or an hour depending on how I’m feeling at the time.

I’m still playing Neko Atsume, Godville and DragonVale. Neko Atsume I’m only missing the memento from Hermyown. In Godville my heroine has just completed my temple and is now saving for retirement and collecting wood to build an ark. In DragonVale I have one of every dragon, two of all but the most recent event dragons, and am working on rift traits for the dragons that can have them.

I occasionally play Gardenscapes and Fishdom when I fancy a match 3 game. I’m also occasionally playing sudoku, but I’m much slower and it’s very frustrating now my brain is so foggy. Puzzle games are normally my favourite but I need to be able to think to complete them.

I tried colouring apps but was getting anxious as I couldn’t decide what colour to use. Then I discovered cross stitch apps and they work much better for me. They work like colour by number, so I just follow the code and it tells me if I make a mistake. Once I’ve put the right colour in it won’t overwrite it with a wrong one, which is great as my hands can be quite shaky, and I can zoom in really far if needed so the boxes are big and easy to hit. I’m really happy to have found something I can do that’s relatively low energy and helps when I’m anxious. It helps that I can add my own pictures as the one I’m currently using doesn’t have any penguins by default. Penguins make everything better.