Category: M.E.

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…
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 5 Review

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

Danni is lying in bed wearing a purple turban. They are sticking their tongue out.

A day late because I slept most of yesterday and then all night. Monday was okay, but then on Tuesday I got a migraine and that wiped me out for a couple of days, though I did manage to watch the super blue blood moon on NASA’s YouTube channel on Wednesday. On Thursday a new event came out in Animal Crossing Pocket Camp, and since then I’ve been mostly playing that, looking at cute things on Reddit, and sleeping.

Tomorrow (Tuesday) is my PIP tribunal, so I’m preparing for that now. I’m scared but hopeful. Johan will be there as my appointee, and hopefully a friend as well for support. It’ll be the first time I’m out of the flat since September.

  • Overall mood – Good (not even a migraine can upset me for too long)
  • Average daily sleep – 7 hours 58 minutes (of 11 hours 15 minutes)
  • Longest sleep – 11 hours 46 minutes on Monday (of 16 hours 33 minutes)
  • Clothes changed – 2 (Space Penguins, then Penguin made of Penguins 🐧, both due to accidents)
  • Wipe wash – 1 (had a quick one when changing the first top)
  • Water wash – 0
  • Hair wash – 1, with shampoo cap
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – 1 (Super Blue Blood Moon streamed by NASA)
  • Music listened to – None
  • Blog posts written (including this) – 0 (as this is a day late)
  • Penguins cuddled – quite a few 🐧🐧🐧
  • Johan hand holds – not enough
  • Johan hugs – 0
  • Time on Twitter – 7 hours 41 minutes (average 1 hour 5 minutes a day)
  • Time on Reddit – 19 hours 35 minutes (average 2 hours 47 minutes a day)
  • Time on Facebook – 46 minutes (average 6 minutes a day)
  • Other –
    • Migraines are evil. I’m glad I can sleep through the worst after taking my meds though.
    • I found out there is a penguin galaxy! The Penguin and the Egg (NASA)
    • Penguins continue to be awesome. As do Johan, Sammie, and my friends.

Game stuff

  • Games played – 6
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
    • Loop
  • AC: Pocket Camp Level – 71
  • Godville Heroine Level – 48 (56% done)
  • Godville wood for ark – 5.0%
  • Godville savings – 281 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (25 hours 19 minutes, average 3 hours 37 minutes a day)
  • Other –
    • Completed the first stage of the new event in Animal Crossing:Pocket Camp in two days. It’s catching bats this time.
    • Had to make a spreadsheet to work out who had given me what bats, as my friends are really generous. Discovered I’d forgotten how to automate stuff in a spreadsheet, so am having to track things manually which takes time.
    • Figured out how to play Animal Crossing in landscape on my tablet, initially by accident. Wrote a guide on the subreddit but people keep missing a key step.
    • Dragonvale has a new event for Valentines. I’ve not played much of it though.
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.