Week 28 Review

Danni smiling with clean hair.

I had a proper hair wash so celebrated with a photo πŸ™‚

Was mostly a good week. Was still on a high from seeing Sammie, and when I was awake I felt up to watching lots of stuff, like football, Netflix and YouTube. I had some anxiety as the care home for respite didn’t get sorted out until Thursday, and I was struggling to modify my care information booklet to make it suitable for staying there instead of having home carers (as they’ll need to do more stuff and they don’t need to be at set times with 24 hour staff).

Was a little annoying that I felt up to going out and doing things but I needed to save my energy for travelling to the care home. On the Monday though I had a hug from Johan, which was well worth the pain it caused.

  • Overall mood – Awesome/Good, mostly normal level of symptoms
  • Average daily sleep – 9 hours 17 minutes
  • Longest sleep – 15 hours 41 minutes from Saturday morning to Sunday morning (deep sleep 61%)
  • Clothes changed – 1
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 1 (and it was a proper one with water and shampoo!)
  • Books read – Started This is True book 1
  • TV watched – Lots, including football (France beating Belgium, Croatia beating England), Steven Universe and Ultimate Beastmaster on Netflix
  • YouTube videos watched – Too many to list
  • Streams watched – Playerunknown’s Battlegrounds and Fortnite on Twitch and Rockhopper Penguin Cam
  • Music listened to –0
  • Podcasts listened to – Welcome to Night Vale episodes 40 and 41
  • Blog posts written – 1
  • Penguins cuddled –  Yes 🐧🐧🐧
  • Johan hand holds – Lots
  • Johan hugs – Yes! A big one on Monday!
  • Time on Twitter – 2 hours 5 minutes (average 17 minutes a day)
  • Time on Reddit – 18 hours 10 minutes (average 2 hours 35 minute a day)
  • Time on Facebook – 9 minutes (average 1 minute a day)
  • Other –
    • Really happy to be well enough to watch stuff again. I have a lot to catch up on.
    • Johan hugs are awesome.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 112
  • Godville Heroine Level – 56 (42% done)
  • Godville wood for ark – 31.7%
  • Godville savings – 1 million, 332 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (25 hours 6 minutes, average 3 hours 35 minutes a day)
  • Other –
    • Played a ton of Animal Crossing to complete the Dappledot event. Managed to do so a day early.
    • Tried to return as many Dappledots as possible to friends who sent them, but there were just too many.
    • Finally finished a cross stitch while listening to Welcome to Night Vale.

Week 27 Review

Danni is lying in bed, sticking their tongue out while holding a Fab ice lolly in a red holder.

I remembered to take a photo this week! I was talking to Sammie and Johan while on the Surface and took this photo to show off my ice lolly. It made sense in context.

This week has been really hot. Luckily my bedroom is sheltered from the sun, so I’ve been fine with just my window open (and ear plugs to cope with the increased noise). I do have a fan but I’ve not needed it yet.

Health-wise it’s been an up and down week. Other than a couple of migraines (I think I might need to investigate why they’re becoming more common) I’ve not been too bad so long as I don’t move much. By the end of the week I could even move a bit without agony, which was great. The migraines were not fun though, and I also had sleep paralysis that meant I needed Johan to come home early as I couldn’t move while the carer was here.

As I was okay with light and sound for me, I watched a lot of stuff on the telly. Mostly football, but also some YouTube videos. I’m happy that England got through to the semi finals of the World Cup, though as Sweden were my second team I was a bit sad they lost. The other games I mostly had on in the background while working on other stuff, as I wasn’t as invested in them.

Most of the good stuff of the week happened at the end of it. The big one is on Saturday I saw Sammie! She is towering over Johan now, and if she’s not as tall as me yet then it won’t be long. She came over as Johan was taking her to a gaming exhibition in Newcastle that is there as part of the Great Exhibition of the North. They both said they enjoyed it, and I gave Johan some money so they could get food afterwards. I would have liked to go myself, but I wasn’t well enough.

The current idea is for Johan to take Sammie to other places I would if I were well enough, especially the more active ones, but I hope to join them for the more accessible outings if well enough. Will need to check with everyone involved first, and Johan is off to Sweden in a couple of weeks so we’ll look into it more when he gets back.

We got a brown envelope of doom from the DWP, but luckily it was a positive one: I’m staying in the ESA support group without needing a work capability assessment. I didn’t see the form Johan filled in (as he’s my appointee and it’s too much for me) but he must have done a good job. My money is sorted at least for now, which is a big relief.

Sunday morning Johan ran the Great North 10K, and even though it was really hot he ran a personal best, finishing in less than 41 minutes and coming 77th out of 4487 finishers. He’s really happy and I’m very proud of him. There was also a picture of the Running Ninjas on the local newspaper website that was awesome. I was recovering from Saturday so he was able to stay out with his friends for a bit afterwards (the afternoon care call helps with that).

I spent some time this week working on adapting my care instruction book for when I’m in the care home. Unfortunately the care home we hoped I’d go to hasn’t confirmed they have the room for me yet, so I’m getting nervous as I’m meant to be going in just over a week. If they can’t take me I have a couple of alternatives we can ask, but they’re a bit further away which isn’t great for me. I’m sure it’ll get sorted in time, I just don’t like the uncertainty.

Next week is mostly going to be preparing for going into the care home and Johan going to Sweden. Johan has joined a group to do Relay for Life at the weekend but we don’t know what times yet (he can’t stay all day because of me). There’s also more football which I’m looking forward to, especially the England game.

  • Overall mood – Good/Awesome at the weekend. Mixture of high and normal symptoms depending on the day.
  • Average daily sleep – 10 hours 11 minutes
  • Longest sleep – 14 hours 41 minutes from Wednesday morning to Wednesday afternoon (deep sleep 64%)
  • Clothes changed – 2 (One Day I’ll Take Over The Planet penguin top on Monday, Zen penguin’s guide to hoppiness and purple loose trousers on Saturday)
  • Wipe wash – 2
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched – Lots of football
  • YouTube videos watched – Tom Scott, Jessica Out of the Closet, vlogbrothers, hankschannel, Mr Puzzle and standupmaths.
  • Streams watched – Rockhopper Penguin Cam
  • Music listened to – None deliberately, but I heard a lot of Three Lions being sung.
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Dozens
  • Johan hugs – 0, but 2 Sammie hugs!
  • Time on Twitter – 6 hours 10 minutes (average 52 minutes a day)
  • Time on Reddit – 28 hours (average 4 hours 1 minute a day)
  • Time on Facebook – 26 minutes (average 3 minutes a day)
  • Other –
    • My bed has been fixed! Just had the controller replaced and a lock added so the carers can’t pull it out again.
    • New upstairs neighbours get very shouty sometimes. I do not like. I was hoping we were over that after the last shouty neighbours were gone (though I don’t want them murdered).
    • Sammie is super awesome! She had a “rant” about how much she loves her family. It was amazing.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 111
  • Godville Heroine Level – 56 (11% done)
  • Godville wood for ark – 30.9%
  • Godville savings – 1 million, 281 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (13 hours 41 minutes, average 1 hour 57 minutes a day)
  • Other –
    • I keep meaning to do more cross stitch but forgetting. Maybe this week.
    • Just managed to get the gold fishing trophy in Animal Crossing but didn’t complete it.
    • There was a big update in Animal Crossing. Now animals can get to level 25. There are also some UI changes that make things a bit easier but I still need my spreadsheet to track things.
    • New flower event started on Friday. This time it’s collecting Dappledots from sunflowers. I’m doing okay with it, but the second half is usually much harder.

Week 26 Review

Note to self: Ask Johan to take a photo this week.

Spent most of the week either sleeping or watching stuff on the telly. Lots of football, lots of YouTube, and even a film. Still not completely over the payback from the shower, though movement is definitely worse than sensory stuff right now.

Tuesday was the best day- I woke up really early and needed Johan to sort me out, but we decided to stay up at that point. Johan went out and ran a half marathon about 4.30am, I got McDonalds delivered for breakfast (I wanted a cheese and egg McMuffin, which I got), and then we watched Deadpool together, which was awesome. Also had the cleaner visit, someone from the care agency with a new care plan (same as the old one but different folder), then slept all afternoon.

On Thursday I watched Doctor Who (I’m slowly getting through last year’s episodes) and saw England beat Belgium in the World Cup. I don’t like how overpaid footballers are, but do like watching it, especially with Johan so we can talk about the different hair, shoes, and the large amount of rugby tackles (seriously, what is up with the amount of rugby or wrestling tackles this tournament? Footy is meant to be a non-contact sport!).

Saturday I spoke to Sammie and one of her friends, helping out with internet stuff. Sammie’s friend said Johan and I are cool, which made me feel really good. Sunday I was watching more footy, but partway through the second game I got a horrible migraine so had to turn all the lights off and stop watching. I should have realised it was coming as I get a weird smell as an aura beforehand, but as my window is open I thought it was real.

My bed has completely stopped working, and Johan is attempting to get equipment services to fix it. They were on training when he phoned which didn’t help. Luckily it’s not completely on the floor and it’s level so it’s not as bad as it could be, but with how much I’m struggling to move at the moment I hope it’s fixed soon so I can sitΒ myself up a bit and the care workers can raise it to make giving me personal care easier.

  • Overall mood – Good, but high symptoms, especially when moving (and had the migraine).
  • Average daily sleep – 11 hours 14 minutes
  • Longest sleep –  21 hours 21 minutes from Monday morning to Monday evening (deep sleep 56%)
  • Clothes changed – 1 (Orange Boy Fan Club)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1 (Shampoo Cap)
  • Books read – 0
  • TV watched – Lots of footy and Doctor Who Series 10 Episode 2
  • YouTube videos watched – Lots and lots
  • Streams watched – Rockhopper Penguin Cam
  • Films watched – Deadpool
  • Music listened to – 0
  • Podcasts listened to – 0
  • Blog posts written – 2
  • Penguins cuddled –  Lots, especially Nicky, Phoebe and Poseidon🐧🐧🐧
  • Johan hand holds – Tons πŸ™‚
  • Johan hugs – Not yet. Will be well enough soon I hope
  • Time on Twitter – 2 hours 5 minutes (average 17 minutes a day)
  • Time on Reddit – 22 hours 52 minutes (average 3 hours 16 minutes a day)
  • Time on Facebook – 22 minutes (on Tuesday)
  • Other –
    • Really happy to be well enough to watch things now.
    • Even better when Johan can watch with me πŸ™‚ He steals my wheelchair. Wish it could be all the time but eventually having him in here is too much for my body.
    • Sammie is awesome. Her friends seem cool too πŸ™‚
    • I love being well enough to go on the Surface. So much easier to type on than my Android tablet.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 110
  • Godville Heroine Level – 55 (77% done)
  • Godville wood for ark – 28.9%
  • Godville savings – 1 million, 231 thousand
  • Cross stitch completed – 0 (just done a small amount)
  • Most played game – Animal Crossing Pocket Camp (9 hours 34 minutes, average 1 hour 22 minutes a day)
  • Other –
    • The third fishing tournament has started in Animal Crossing. I don’t think I’m gonna get all the items this time as I haven’t played enough.
    • Barely been on my other games as been watching telly instead.

Week 25 Review

Forgot to take a photo again this week. I blame brain fog.

Monday was my 32nd birthday. Slept through most of it, but did get to open cards and presents which were lovely. I’m incredibly lucky to have such awesome friends when I’m such a terrible one. Sammie got me an emperor penguin ornament which is two adults and a chick, which is meant to be Johan, me and Sammie (though Sammie is now significantly taller than Johan, she says it’s a younger Sammie). I also got presents and cards from my family. I’m so spoilt.

Johan has promised to get me cake from one of the many cake delivery places, but I’ve not been well enough to get it yet. Hopefully it’ll be soon. He did say on Sunday he was happy I could now hold a conversation for more than 5 minutes.

When I wasn’t sleeping, I watched quite a few things on the telly. Some of the England match on my birthday and other world cup matches during the week, YouTube videos, and finally watched the first episode of series 10. This payback has been mostly physical, and though I was still very brainfoggy I was able to figure out scores and what happened in Doctor Who with the help of reading a recap. Moving is still a bad idea though, and my hips are very sore from lying on them (as I need to be on my side to sleep or I can’t breathe). Hopefully it won’t be long before I can get out of bed and test out my repaired wheelchair.

  • Overall mood – Awesome for Monday and Tuesday, good the rest of the week. High symptoms due to shower.
  • Average daily sleep – 9 hours 37 minutes
  • Longest sleep – 17 hours 8 minutes from Wednesday morning to Wednesday evening (deep sleep 59%)
  • Clothes changed – 1 (Penguin made of penguins top)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0
  • Books read – 1 (Dear Chronic Illness
  • TV watched – 4 world cup matches (Tunisia vs England, Germany vs Sweden, England vs Panama and Japan vs Senegal), Doctor Who Series 10 Episode 1
  • YouTube videos watched – Mr Puzzle, Tom Scott, Jessica Out of the Closet, vlogbrothers, totalbiscuit (Genna), Genna Bain (old content), floppotron, scishow (I watched a lot of YouTube this week)
  • Streams watched – Train journey from Aberdeen to Penzance
  • Music listened to – 0
  • Podcasts listened to – 0
  • Blog posts written – 0 (due to brainfog – watching stuff was easier than writing stuff)
  • Penguins cuddled – Lots 🐧🐧🐧
  • Johan hand holds – Multiple
  • Johan hugs – 0
  • Time on Twitter – 1 hours 41 minutes (average 14 minutes a day – was reading but not tweeting much)
  • Time on Reddit – 18 hours 1 minute (average 2 hours 34 minute a day)
  • Time on Facebook – 3 minutes (on Sunday – wasn’t on otherwise)
  • Other –
    • Was weird week with being okay with watching stuff, but not moving. Football is good because the score stays on the screen.
    • Workmen installed a new metal lamppost outside my window. I think something went wrong as while Johan was watching the council workmen digging up the path, there was a massive spark, our lights dimmed and the council workmen were replaced by Northern Powergrid.
    • Was doing not too bad on Thursday until more workmen came, used power tools and I couldn’t get my headphones on quick enough so ended up super nauseous and bleh.
    • Now it’s installed, I like the new lamppost as it doesn’t shine in my bedroom like the old one. I wish it hadn’t made me feel so ill getting installed though.
    • Finally did a food shop on Sunday. It was well overdue.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • Huniepop
    • World of Warcraft
  • AC: Pocket Camp Level – 107
  • Godville Heroine Level – 55 (48% done)
  • Godville wood for ark – 28.4%
  • Godville savings – 1 million, 186 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (10 hours 48 minutes, average 1 hour 32 minutes a day)
  • Other –
    • New Wedding Gyroidite event. At least it’s an easy collection quest.
    • Basically given up Dragonvale for now. I’m not really enjoying it so not playing.
    • Bought Huniepop on the Steam sale after watching Genna and TB playing it on YouTube. It’s fun, though someone behaving like that in real life would be a really really bad thing. Fantasy is okay though.
    • Went into World of Warcraft on Sunday while on the Surface as there was a free weekend. Confirmed I’m really not well enough to play at the moment, but I miss it a lot. Did use my level 100 boost on my druid though, ready for when I return. Hopefully won’t be too long.

Week 24 Review

No photo for the same reason this is late- the shower really wiped me out.

Slept most of the week. The payback was expected but not exactly wanted. Before it got too bad, I watched quite a bit of Genna Bain’s E3 Snarkathon, which I enjoyed. It’s different with her doing it by herself but I’m glad she’s been able to continue it.

Johan phoned to reduce our TV package because we weren’t really watching anything other than the Freeview channels. They couldn’t do it until we’d replaced the old Virgin HD box with the new V6 box. Johan decided to have the new box put in my room as I have the big telly, and have the Tivo box that I already had put in the living room. That happened on Thursday which was good. It’s a lot quieter and much quicker so it’ll be worth using once I’m up to it.

I got my wheelchair fixed on the Wednesday, which I’m really happy about. I can’t wait to be well enough to use it again. Johan is also happy as he uses it to watch things on my telly with me when I’m well enough to have company πŸ™‚

Johan did a lot of running. He missed his metro for one race because I woke him up during the night and he cancelled his alarms, and I didn’t realise until quite late. We went halves on an Uber so he could make it in time for registration and he did well in the end.

Sunday I had a migraine but luckily it was a short one. I’m so grateful that if I have all the medication (I’m allowed) that I’m able to sleep through the worst of them. The pain is bad but sometimes the ME pain is worse so I can deal.

  • Overall mood – Awesome at the beginning because shower. Good the rest of the week. High level of symptoms because of the shower (especially complete exhaustion once the payback kicked in)
  • Average daily sleep – 11 hours 54 minutes
  • Longest sleep –  17 hours 30 minute from Thursday morning to Friday morning (deep sleep 57%)
  • Clothes changed – 0
  • Wipe wash – 0
  • Water wash – 0 (that shower was exhausting)
  • Hair wash – 0
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – Totalbiscuit (which is now Genna), vlogbrothers, Jessica OOTC
  • Streams watched – Rockhopper Cam, Totalbiscuit (Genna’s E3 Sony Snarkathon)
  • Music listened to – 0
  • Podcasts listened to –  0
  • Blog posts written – 1
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Lots
  • Johan hugs – 0
  • Time on Twitter – 3 hours 24 minutes (average 29 minutes a day)
  • Time on Reddit – 11 hours 43 minutes (average 1 hours 40 minute a day)
  • Time on Facebook – 31 minutes (average 4 minutes a day)
  • Other –
    • The shower payback definitely was worse physically than cognitively, which is why I could still watch stuff when not asleep
    • Even when not asleep, spent a lot of time out of it
    • TV Tropes and Reddit are good distractions

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 107
  • Godville Heroine Level – 55 (12% done)
  • Godville wood for ark – 27.4%
  • Godville savings – 1 million, 144 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (14 hours 3 minutes, average 2 hours a day)
  • Other –
    • Completed Elegant Amenity in Animal Crossing
    • Finished adding all the clothes to my Animal Crossing spreadsheet so I can track how many of each I have (because it’s hard to do in game)
    • My pet in Godville got knocked out, but managed to resurrect it in time.