Week 31 Review

Danni is in their wheelchair, wearing a lilac top with a cat on it, a lilac baseball cap, sunglasses and a penguin neck cushion. They are smiling.
Danni back at home, before hoisting into bed

I am glad to be home. Got back on Wednesday 1st August.

Care homes suck. Even good ones. It’s just not the same as being at home, and if you have severe ME, then it’s really not good. There’s too much noise, not enough staff, too many people to try and teach how you need things doing, and for me, constant anxiety over everything. They are not good for me, but at the moment it’s the only form of respite we can get.

Monday Johan got back from Sweden, and as I was running out of essentials (mostly incontinence pads) he came to visit me and bring the stuff I needed. It was fun tracking his flight using an app on my phone, and he had free wifi on the plane so we were chatting at the same time πŸ™‚ He also bought me some Swedish chocolate, which was yummy.

Monday night was not so good. I still had really bad diarrhoea, and the night staff decided to leave me for 4 hours, which meant I had been lying in a dirty pad for about 3 1/2 hours and by the end of it had spread up to my shoulders. Ended up with really bad nappy rash as well as feeling super ill from the washing and changing needed because they weren’t checking on me as often as I needed. It also made a lot of extra work for them because changing my pad takes about 5 minutes for one carer, changing me and the bed takes about half an hour for two carers. I didn’t get to sleep until 4.30am because of that, so slept through to the afternoon.

Tuesday was better, other than being unable to lie on my back due to the nappy rash. Johan came to see me in the afternoon and we talked about what foreign countries we wanted to visit, while looking up the government advice for each country. Determined that we’re not going to quite a few. The night carers were much better than on Monday night, and though they couldn’t manage hourly checks as they were too busy, they did see me every 90 minutes or so which meant it didn’t get as bad as it had been. I’m also grateful for Cavilon as it really helped clear the worst of the nappy rash up.

Wednesday I went home! Before doing so, I put in a complaint about the night staff who were leaving me for hours with the manager. It’ll depend on the response from her as to whether I’ll be going back there again. I was so glad to be back in my own bed.

Thursday I slept most of the day, and felt a bit better for it waking up that evening. Managed to do a food shop and ordered World of Warcraft Battle for Azeroth Collector’s Edition (because I missed WoW so much I knew I’d be playing it again). Johan’s computer decided to die, so he ordered some new parts and I offered to pay as an early Christmas present.Β 

Friday the computer parts were meant to arrive, didn’t, but said they did. That was annoying, but I had a long sleep, waking up Saturday afternoon.

On Saturday the parts actually arrived, so not sure what happened on the Friday. Also on Saturday I went on my desktop computer for the first time since February. After installing a ton of updates, I resubscribed to WoW and after fixing my addons and such, I worked on Argus quests. It’s a great distraction from feeling yukky. Sunday was more WoW until about midday, where I fell asleep before the carers arrived.

Johan is happy with his new computer parts. They have LED lights in them that he can change the colours on. I think he’s changed his mind on RGB computer stuff since he’s seen how awesome they are πŸ™‚ I want some but there’s no point in getting them in my actual computer as I can’t see it from where I am in bed, and the keyboards are too heavy for me. I am going to get the RGB version of the mouse I have when it dies, but it’s being stubborn and continues to work πŸ˜›

  • Overall mood – Other than the Monday night which was horrible, I had an awesome week! High symptoms due to care home/travelling/recovery but distraction helped.
  • Average daily sleep – 10 hours 27 minutes
  • Longest sleep – 19 hours 17 minutes from Friday evening to Saturday afternoon (deep sleep 58.5%)
  • Clothes changed – 3
  • Wipe wash – 2
  • Water wash –  0
  • Hair wash – 0
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episodes 9-12, Ultimate Beastmaster on NetflixΒ 
  • YouTube videos watched – Lots, including WoW Cinematics
  • Streams watched – Bob Ross on Twitch
  • Music listened to – Random playlist on Google Play Music while travelling home
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled –  Lots! Glad to have home ones again
  • Johan hand holds – Lots as he was home!
  • Johan hugs – 1 (worth it)
  • Time on Twitter – 6 hours 17 minutes (average 53 minutes a day)
  • Time on Reddit – 16 hours 58 minutes (average 2 hours 25 minutes a day)
  • Time on Facebook – 1 hour (average 8 minutes a day)
  • Other –
    • The difference between the good night staff and the bad night staff was incredibly noticeable.
    • I was just about to contact Johan to phone the care home so they’d come sort me out when they turned up on Monday night/Tuesday morning. My timer showed just over 4 hours.
    • Swedish chocolate is nommy.
    • Home is the best.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • World of Warcraft
  • AC: Pocket Camp Level – 117
  • Godville Heroine Level – 57 (45% done)
  • Godville wood for ark – 35.0%
  • Godville savings – 1 million, 473 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (8 hours 45 minutes, average 1 hour 15 minutes a day)
  • Other –
    • New flower event in Animal Crossing. This one is catching Flutterflies.
    • I have so much to do in WoW. Luckily I’m still in my guild and I’m so happy to be playing again.
    • Completed the Argus questline in WoW.

Week 30 Review

Danni is smiling. They are wearing a purple penguin dress without sleeves, and have Poseidon the baby Emperor Penguin on their shoulder.
Danni and Poseidon

Been another mixed week, with some really good bits and some not good bits.The best bits were getting a bath (first time in 2 years) and seeing a friend πŸ™‚

I had the bath on Tuesday, and this time remembered my penguin bath toy. I was allowed to just soak in there for about 10 minutes with the light off which was amazing. It was nice to be properly clean again.

I saw my friend Marga on Sunday, after having to cancel the week before due to migraine. She is awesome and the time disappeared really quickly. Talking to her helped me feel better after some not great days.

Wednesday and Thursday nights were not good. I’m meant to have hourly checks as not able to use the buzzer, and though on a night time this often becomes 2 hourly due to lack of staff (2 care workers for 22 residents, most of whom need a lot of help) those nights it was even worse than that, resulting in being covered in my own poo for hours (diarrhoea caused by my body disagreeing with the food). The resulting washing and bedding and clothing changes made me feel horrendous. A couple of the care workers also made me feel really guilty for needing frequent help, which also wasn’t good. (From the future: I did put in a complaint the day I came home.)

When more with it, I spent a lot of time watching TV shows I needed to catch up with. First was Steven Universe, which both confirmed a theory I’d had from season 1, but also gave me a lot of other questions. I now have to wait for new episodes to come out, which I’m not used to. I also watched some of last year’s Doctor Who. Bill is an awesome companion, and I’ve really enjoyed these episodes.

I didn’t watch much of ESA this year, but I did catch the last race and the closing speeches. Saw Johan on the stream which was good (though I did have to check it was actually him – silly face blindness :P). It looked like a really good event, and now I just need my body to let me travel so I can go next time πŸ˜›

  • Overall mood – Mixed: awesome for Tuesday and Sunday, bad for Thursday and Friday, good for the rest of the week, with mostly high symptoms.
  • Average daily sleep – 8 hours 47 minutes
  • Longest sleep – 15 hours 5 minutes from Friday afternoon to Saturday morning (deep sleep 56%)
  • Clothes changed – 7
  • Wipe wash – 6
  • Water wash –  1 (in the bath!)
  • Hair wash – 1
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episodes 4-8, Steven Universe up to Season 5 episode 25
  • YouTube videos watched – Some
  • Streams watched – ESA Marathon on Twitch
  • Music listened to – 0
  • Podcasts listened to – Welcome to Night Vale episodes 42 and 43
  • Blog posts written – 1
  • Penguins cuddled –  Primrose. Nicky, Isabella and Poseidon
  • Johan hand holds – 0 (he’s in Sweden)
  • Johan hugs – 0 (ditto)
  • Time on Twitter – 1 hours 56 minutes (average 16 minutes a day)
  • Time on Reddit – 38 hours 41 minutes (average 5 hours 31 minutes a day)
  • Time on Facebook – 3 minutes
  • Other –
    • Day staff are good, especially since they let me sleep now they know I don’t want waking up every hour.
    • Some night staff are great, and are just struggling due to not enough of them. Some, not so much.
    • Got soaked when someone didn’t put the top on the Hydrant properly and it fell off the bed. That was not the most pleasant thing ever, but it did cool me a down a little bit.
    • Some of the staff don’t understand my communication issues. Turns out even writing them down in a guide doesn’t always help.
    • WordPress has a new editor and it’s weird. If this is messed up, that’s why πŸ˜›

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 116
  • Godville Heroine Level – 57 (10% done)
  • Godville wood for ark – 33.6%
  • Godville savings – 1 million, 426 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (15 hours 37 minutes, average 2 hours 13 minutes a day)
  • Other –
    • Just about completed the Gyrodite event in time. It was annoying.
    • New fishing event, which was really annoying. Bought the golden rod with leaf tickets (premium currency) and though I completed the main goals, I didn’t get all the items. They made it a lot harder and I’m not happy.
    • Spent very little time on other games, but did finally complete another cross stitch while listening to podcasts.

Week 16 Review

Danni is at the bottom of the image, wearing a shirt and tie, sunglasses and a hat. Above is Johan, who is wearing a purple t-shirt and is leaning down. They both are smiling and are outside.

Danni is in their wheelchair. They are wearing a purple shiny mermaid tail.

Danni is lying in bed. They have had their hair shaved so they are almost bald.

To make up for the lack of photos recently, have I have three this time. It was a brilliant week!

Monday wasn’t amazing. I tried to do a food shop but had to stop in the middle as I was too ill to continue. That made me feel a bit sucky. Johan put some water beads in water for me and I watched them start to grow before going to sleep.

Tuesday was better. Johan helped me with a wipe wash and shaving my armpits, which made me feel loads better. I had to get new clothes on twice though as the first top got wet. Being cleaner was good!

By Thursday I was doing much better, probably the best day I’ve had all year. The weather was also really nice, reaching a high of 24Β°C. I asked Johan if I could go out and he came home on time so I did! I got fully dressed, wearing a shirt and tie, pink skirt, rainbow compression socks and a purple mermaid tail blanket.

First stop was the barbers to get my head shaved, as my hair was starting to hurt me with not being able to wash and comb it as often as it needed. No arguments about my gender this time which I’m glad of.

Next was going on the Metro to get into Newcastle. I love trains and bridges, so being on a train going over a bridge with other bridges outside made me very happy! I tried not to flap too much because I didn’t want to use up all my energy.

In Newcastle we went into Eldon Square. Looked around a bit, and bought a few small things from Tiger and The Works. Next was Primark as I was wanting more pyjama tops. Couldn’t find the ones I was looking for, but did get a hat, a hoodie and a new neck cushion to try.

By this point we were hungry so went to The Gate. We were wanting to go to Rub but it was closed, so went to TGI Fridays instead. Johan got a huge steak and a rocky road sundae, while I had a chicken burger and sweet potato chips. They boxed mine up for me as I could only manage half. As it was the first time we’d been out on a date in over a year it was really special.

Since then I’ve had payback, which was completely expected. It was worth it though to get out of this bed and room. I’ve told Johan he needs to clear the living room up so I can go in there once I’ve recovered. I’m still on a bit of a high from it.

  • Overall mood – Good and Awesome!
  • Average daily sleep – 8 hours 52 minutes (of 10 hours 47 minutes)
  • Longest sleep – 13 hours 27 minutes from Wednesday afternoon to Thursday morning (of 17 hours 16 minutes)
  • Clothes changed – 4 times (Trans and Tired twice, shirt and tie, Gender is a Universe)
  • Wipe wash – 2
  • Water wash – 1
  • Hair wash – 0 (But it was shaved off so I don’t need one yet)
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – 0
  • Streams watched – 0
  • Music listened to – 0
  • Blog posts written – 0
  • Penguins cuddled – Yuppers 🐧🐧🐧
  • Johan hand holds – I loves πŸ’œ
  • Johan hugs – Nope, but had a date
  • Time on Twitter – 9 hours 50 minutes (average 1 hour 24 minutes a day)
  • Time on Reddit – 27 hours 56 minutes (average 3 hours 59 minutes a day)
  • Time on Facebook – 34 minutes (average 4 minutes a day)
  • Other –
    • Water beads are awesome. They grow so much and feel weird but nice.
    • Talking to Sammie is good. She is amazing.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 89
  • Godville Heroine Level – 52 (44% done)
  • Godville wood for ark – 18.1%
  • Godville savings – 730 thousand
  • Cross stitch completed – 3
  • Most played game – Animal Crossing: Pocket Camp (9 hours 49 minutes, average 1 hour 24 minutes a day)
  • Other –
    • Animal Crossing has added Fortune Cookies, which are their version of loot boxes. At Β£2 of premium currency each, and being able to get duplicates, a lot of people are not happy. I’ve accepted I won’t be completing my catalogue now, and am ignoring them other than the ones you can buy with normal currency (bells).
    • I finished getting the purple tulips, and have now started on the pink tulips.
    • DragonVale has a new dragon. I’m casually going after it.
    • The only thing I have left to get in Neko Atsume is the Sassy Fran wallpaper. I’m a few visits away.

Week 12 Review

Danni is lying in bed with their head on a penguin cushion. The light behind is causing lens flare.

The photo is terrible but was what I could manage. I really need to ask Johan to take more photos of me πŸ˜›

I’m still not quite happy with the blog theme but I’ll get there eventually. At least this one doesn’t have a massive picture on the top (header images aren’t really my thing, as I’m terrible at them).

This week was a bit better than last week. I think I might be coming out of this blehness, though I still don’t know what caused it. I spent a lot of time trying to sleep or looking at cute pictures/reading rubbish on Reddit.

The best parts of the week were having my top changed and a wipe wash with Johan on Wednesday, and having my hair washed with a shampoo cap on Saturday. It was nice to feel cleaner. I also remembered I liked marmalade so had that on toast a few times for lunch, and our favourite pasta restaurant was delivering here again so we got nommy fuds from there on Thursday evening (I love the tagliatelle carbonara and the white chocolate cheesecake). I was asleep for quite a few of the care calls, but by the end of the week I could tolerate the carers being in my room again. Other than a few changes I wasn’t told about (which made me very anxious and panicky) my mood was good.

Johan decided to run to Crawcrook for pizza on Tuesday. He says the pizza, chips and sauce are all just as good as he remembered. I’m a little bit jealous but Crawcrook is a tad far for me to go at the moment. Getting pizza home would also be interesting as it takes nearly an hour on the bus, taxis are expensive and Johan can’t exactly run that far while carrying a pizza.

While Johan was out running I attempted playing Vostok Inc. and Stardew Valley on the Nintendo Switch. Vostok is really fun, but it’s a twin stick shooter and I couldn’t get my hands to do different things so I’d be shooting in the direction I was running instead of at the enemies. I died a few times before giving up. I’ll get Johan to play it for me and try again on PC at some point. Stardew Valley I again struggled with the controls. I think for now the Switch will be mostly Johan’s, and when my hands/concentration gets better I’ll have a go. Luckily we can plug it into the telly so I can watch him playing it πŸ™‚

Saturday I was feeling up to watching things again so I resubscribed to Netflix, as they were offering me another free trial. Watched Nailed It with Johan and it was hilarious. Sal should just never touch a microwave. We had McDonalds as we’d not done a shop since the middle of February so didn’t have much in. It was an awesome day and I hope we can watch more together.

Sunday I had a bit of payback from watching Netflix so didn’t do much. Still felt nowhere near as bad as I did the week before which I’m very grateful for. Hopefully whatever caused that is now gone and I can concentrate on getting up and doing things soon.

  • Overall mood – Good, as I wasn’t as ill as last week
  • Average daily sleep – 7 hours 20 minutes (of 10 hours 18 minutes)
  • Longest sleep – 7 hours 38 minutes from Sunday evening to Monday morning (of 11 hours 20 minutes)
  • Clothes changed – 1 (nerdy penguin and penguin fleece)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1 (shower cap)
  • Books read – The Wall (53%)
  • TV watched – Nailed It (Netflix)
  • YouTube videos watched – 0
  • Streams watched – Penguin Cam
  • Music listened to – 0
  • Blog posts written – 2 (being late with a weekly review helped with that)
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Indeed
  • Johan hugs – Not yet. Soon?
  • Time on Twitter – 9 hours 44 minutes (average 1 hour 23 minutes a day)
  • Time on Reddit – 35 hours 14 minutes (average 5 hours 3 minutes a day)
  • Time on Facebook – 58 minutes (average 8 minutes a day)
  • Other –
    • Digestive system was bad but not quite as much as the week before.
    • I wish I didn’t find unexpected change so hard. It’s worse when I can’t use my usual coping mechanisms as too ill to move.
    • Johan made me laugh so hard I couldn’t breathe. Unfortunately I’ve forgotten what it was about.
    • Twitter friends are amazing.
    • So is Sammie. And Johan.
    • As are penguins.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 84
  • Godville Heroine Level – 51 (25% done)
  • Godville wood for ark – 13.7%
  • Godville savings – 589 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing: Pocket Camp (7 hours 11 minutes, average 1 hour 2 minutes a day)
  • Other –
    • Didn’t play games at all Tuesday or Wednesday as wasn’t feeling up to it.
    • Got a Gold Trophy in the Animal Crossing fishing tournament.
    • Second part of the Mario Event started, and I got every item available other than the leaf ticket one.
    • Four more animals were added, and I’ve invited them all to my camp.
    • Elite rift dragons in Dragonvale are annoying. So many fails.
    • I keep missing Hermeowne in Neko Atsume. I only need her memento to have a complete catbook.

Week 9 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 Β£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.