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 5 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.

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.

Week 3 Review

Danni is lying in bed, with an eye mask on their head pushing their hair upwards. They are trying to wave and smile, but it's not effective. The picture is tinted purple due to the light. Danni is lying in a day bed. Their eyes are closed and they have a massive grin on their face. Danni is lying on a day bed. They have a huge smile and are sticking their tongue out.

I spent most of this week feeling pretty bleh, mostly due to payback from Esther’s visit. I ended up turning my alarms off as waking up for the care calls was meaning I wasn’t getting enough sleep. I wasn’t well enough to have much done anyway- was in too much pain for washing or changing clothes so it was mostly just pad changes, food, drinks and penguins. The first photo (that Johan took) was pretty typical for most of the week.

On Friday I started feeling a little bit better. I ended up staying awake a long time, which normally comes just before a change in how I’m doing (either good or bad). By the early hours of Saturday I felt well enough to sit up in bed more than I have in months, so I knew I was over the worst of the relapse and payback. I had a long sleep from Saturday afternoon to Sunday morning, and once I’d gotten over the waking up awfulness I knew I was doing better.

I sat up really high for me in bed, to the point where Johan said it looked like I was actually sitting up! (Normally my sitting up still looks like lying down to most people, just not flat). As I was managing that without any issue, and I was no longer feeling horrendous whenever I moved, I asked Johan to take me into the living room. After a bit of grumbling he did it, and it was amazing! It had been over 4 months since the last time I got out of bed at all, and it felt really weird being in a different room. I didn’t want to push it too much so was only in my wheelchair to get me into the living room then I went on the day bed in there, but it was awesome being in the same room as Johan and having a different view. Until it got too dark I could see the snow falling outside which was really cool. The second and third photos were taken in there, Johan taking the second and me the third.

Johan went to the gym for a run, after checking I’d be okay staying in the living room (I promised I wouldn’t fall out of bed- the cushion tends to stop me). I mostly just played mobile games and read Reddit while in there, which is the same as what I do normally in bed but the different surroundings made it so much better. He arrived home just after the care workers came for my evening call, and they were very confused when I wasn’t in my bedroom. They changed the sheet on my bed (much easier to do when I’m not in it, and desperately needed as I hadn’t been well enough to have it done since Christmas), hoisted me back into my chair and then from my chair into my normal bed, and then it was just the normal personal care and food and penguins. I’m still on a big high from it, and will see how I do over the next few days before deciding what next.

I’ve got my PIP tribunal at the beginning of February, so I’m probably not going to go out before then (as we said I’d be there). I’m hoping to manage being in the living room at least again before then. If I don’t, at least I’ll be able to remember I did it this time πŸ™‚

As you can imagine right now I’m super happy. What also helped with that is that yesterday was Penguin Awareness Day. We should all be aware of penguins and how awesome they are.

Now for my normal stuff.

  • Overall mood – Good, with a couple of mehs (when I felt particularly rotten) and a couple of excited/amazings (being well enough to get out of bed!)
  • Average daily sleep –Β  8 hours 3 minutes (of 9 hours 51 minutes trying) – a big improvement
  • Longest sleep – 11 hours 46 minutes from Saturday evening to Sunday morning (of 16 hours 1 minute trying)
  • Clothes changed – 0 (Was too ill until today, and prioritised going in the living room)
  • Wipe wash – 0 (same reason)
  • Water wash – 0
  • Books read – 0 (I really need to pick a book to read next. I just get overwhelmed by choice then go back to Reddit :P)
  • TV watched – 0
  • YouTube videos watched – 2 (Penguin videos for Penguin Awareness Day)
  • Music listened to – Do It For Her from Steven Universe. I tried to listen to some more songs but gave up after a couple of minutes.
  • Blog posts written (including this) – 1
  • Penguins cuddled – many 🐧🐧🐧🐧🐧
  • Johan hand holds – plenty
  • Johan hugs – 1 (While I was in the living room I had the best cuddle from Johan. It made an already awesome day even better.)
  • Time on Twitter – 11 hours 48 minutes
  • Time on Reddit – 19 hours 18 minutes
  • Time on Facebook – 53 minutes
  • Other –
    • Tried the giant banana from the massive sweet box. It was disgusting πŸ™ I was very disappointed.
    • Super proud of Sammie for how she’s handling stuff (being a teenager is hard).
    • Johan read the 25% ME Group magazine to me. I need to figure out renewing my membership.
    • Got a new calendar from DoodleCats. Is adorable. Need to find command hook to put it up.
    • I think I’m finally over the relapse! It’s so nice to feel more like Danni-normal! I’m hoping I don’t get too much payback from going into the living room.
    • I wrote this blog post on my Surface tablet. So much easier than on Android, especially as it has a keyboard. Photos are particularly hard to do as the app sucks for it.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 65
  • Godville Heroine Level – 47 (69% done)
  • Godville wood for ark – 3.1%
  • Godville savings – 167 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (22 hours 27 minutes)
  • Other –
    • The second stage of the butterfly event in Animal Crossing:Pocket Camp is really frustrating. Luckily I have some very kind friends who leave me lots of butterflies so I only need 5 more gold winter ones to complete.
    • I’ve had to make a list of everyone who is gifting me butterflies so when I do catch them I can share with them. Feels bad that for every 4 or 5 they give, I only catch 1 so can’t return as many.
    • Got my first level 20 animal in AC:PC. Tex is a cute penguin πŸ™‚
    • Finished all the free cross stitch patterns, and used some of my coins to buy the first cat pack. The first one I did is an orange cat who isn’t as awesome as Bilbo but still pretty. Bonus cross stitch picture below.
    • I’m considering taking a break from DragonVale once Bring it Back is over. I’ve got all the main dragons and eggs, and the rift is a bit overwhelming. I’ll probably return for the next event.

A virtual cross stitch picture of an orange cat.

2018 Week 2 Review

A photo of Danni's face. Their head is resting on a pillow. The entire image is tinted purple from the light in the top right corner. A photo of Danni lying in bed, wearing a dark t-shirt with blue penguins wearing space helmets. They are smiling.

I’ve been a very tired penguin, and have not been sleeping as much as I’ve been wanting. These may be related. I’ve also been hallucinating quite a bit. When it’s hearing Johan calling me when he’s not home, it’s pretty easy to figure out it’s not real. The phone or doorbell ringing are harder. Music helps, but I have to be careful as it can easily be overwhelming.

Johan has been doing a lot of running, including a marathon today that he ran faster than anyone else doing a marathon there. He is happy. I am proud!

Main event was getting a visit from Esther today! Thank goodness for adrenaline. Totally worth it even if I get payback from it. I’m hoping to be well enough to have more visits soon.

Two pictures this week – an attempt at a selfie in my normal (purple) light conditions, then a second where I made the light white for a minute. White light is very bright. Having the light behind me is excellent for not being overwhelmed but not good for selfies.

  • Overall mood – Good 😊
  • Average daily sleep – 6 hours 44 minutes (of 10 hours 22 minutes trying)
  • Longest sleep – 8 hours 41 minutes from Wednesday night to Thursday morning (of 11 hours 40 minutes)
  • Clothes changed – 1 (Space Penguins. Because Space Penguins.)
  • Wipe wash – 1 (And was much more painful than expected)
  • Water wash – 0
  • Books read – 0
  • TV watched – Small amount of BBC News when trying to find out if Hawaii had a missile headed towards them (they didn’t)
  • YouTube videos watched – 0
  • Music listened to – Darwinia soundtrack, Spirited Away soundtrack (now my default when hallucinating and am home alone)
  • Blog posts written (including this) – 1
  • Penguins cuddled – lots 🐧🐧🐧
  • Johan hand holds – lots (and a Esther hand hold too!)
  • Johan hugs – 0
  • Time on Twitter – 4 hours 45 minutes
  • Time on Reddit – 10 hours 46 minutes
  • Time on Facebook – 1 hour 10 minutes
  • Other –
    • Received massive box of sweets with a giant foam banana
    • Esther visited!
    • Sammie been sending lovely messages
    • Attached Velcro to my tablet and bed rails so I can easily hang it up when I’m not using it (my bed rails are very tall)
    • Care worker who had been here multiple times before asked if I liked penguins. We’re trying to figure out how on earth she didn’t notice before

Game stuff

  • Games played – 6
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
    • Infinity Loop Premium
  • AC: Pocket Camp Level – 62
  • Godville Heroine Level – 47
  • Godville wood for ark – 2.2%
  • Godville savings – 123 thousand
  • Cross stitch completed – 6
  • Most played game – Animal Crossing: Pocket Camp (22 hours 30 minutes – I might be a little obsessed)
  • Other –
    • Got a new pet in Godville, a Lightsaber-Toothed Tiger called Sandy. They’re level 5.
    • Building third tier rustic amenity in AC:Pocket Camp. Once that’s finished I can level all the animals to level 20.
    • Also enjoying the new butterfly event in the garden. I have so many people giving me butterflies I’ve already completed the diamond butterfly goals and am one away from the topaz ones. I think I won’t have a problem getting everything in the event.
    • Completed all the New Year cross stitch patterns. Now finishing the free ones before deciding which to buy with my coins next.