Category: Real Life

Danni

Week 16 Review

Autism, Danni, Gaming, Gender Stuff, M.E., Physical Disability, Real Life, Week in 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 24°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 💜
  • 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 –
    • I WENT OUTSIDE!!!
    • 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 £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.
Danni

Week 15 Update

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

No photo again as forgot to take one.

Another mostly sleepy week. Digestive system was playing up a bit, meaning I needed more meds and had to wake Johan up and call him home more than normal I really make him earn his £64.68 a week.

When more awake, I did quite a bit of reading, books on my kindle, Reddit and TV Tropes. I also ended up reading a lot about Long Live the Queen, a game I played a few years ago. As Sammie is now old enough to play it, I bought it for her. She said she enjoyed it so I’m happy.

The book I read was Burn the Ashes by Heather Shahan, which was recommended to me on Twitter after I asked for suggestions of dystopian young adult fiction with diverse characters and not too much romance. I really enjoyed it, and it’s my favourite book of the year so far. My only problem with it is the sequel isn’t out yet.

Had a migraine on Friday and Saturday but managed to sleep through the worst of it which I’m grateful for. On Sunday I tried to watch the Commonwealth games but the Virgin tivo box was in need of an update as it hadn’t been on in months. Got it working during the men’s marathon just as Callum Hawkins collapsed. It was really sad to see him like that, and frustrating that it took so long for him to get help. I’m glad he got better quickly.

  • Overall mood – Good
  • Average daily sleep – 7 hours 13 minutes (of 9 hours 13 minutes)
  • Longest sleep – 12 hours 28 minutes from Saturday morning to evening (of 17 hours 40 minutes)
  • Clothes changed – 0
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 0
  • Books read – Burn the Ashes. Started Shatter Me.
  • TV watched – Men’s marathon at the Commonwealth games
  • YouTube videos watched – Tom Scott, Vi Hart and How to Adult
  • Streams watched – 0
  • Music listened to – 0
  • Blog posts written – 0
  • Penguins cuddled – Indeed 🐧🐧🐧
  • Johan hand holds – Yes!
  • Johan hugs – nope
  • Time on Twitter – 5 hours 7 minutes (average 43 minutes a day)
  • Time on Reddit – 35 hours 17 minutes (average 5 hours 2 minutes a day)
  • Time on Facebook – 1 hour 7 minutes (average 9 minutes a day)
  • Other –
    • Migraines are ebil.
    • Johan went running with his Running Ninja friends. This is good.

Game stuff

  • Games played – 6
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
    • Rainbow Clouds
  • AC: Pocket Camp Level – 87
  • Godville Heroine Level – 51 (96% done)
  • Godville wood for ark – 16.9%
  • Godville savings – 701 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing: Pocket Camp (8 hours 34 minutes, average 1 hour 13 minutes a day)
  • Other –
    • Rainbow Clouds is too hard for me.
    • Glad the events are calming down a bit in Animal Crossing.
Danni

Week 14 Update

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

Fell behind with these blog posts. Hoping to catch up now, but my memory isn’t great so relying on my diary more. No photo as I forgot to take one.

Had a good, though very sleepy week. Managed a hug with Johan which was awesome, and watched some stuff on Netflix with him. Also managed to finish a book which makes me happy. Tried a face mask – it was rather messy, but I liked it so might try again at some point.

Of the Netflix shows I watched, I really liked Nailed It and Ultimate Beastmaster. The very first episode of The Great British Bake Off was really weird. Also watched an episode of Black Adder which I’d not seen in years.

  • Overall mood – Good, with an Awesome on Saturday.
  • Average daily sleep – 8 hours 22 minutes (of 11 hours 41 minutes)
  • Longest sleep – 13 hours 27 minutes from Friday morning to Saturday morning (of 18 hours 15 minutes)
  • Clothes changed – 1 (Trans and Tired)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1 (shampoo cap)
  • Books read – The Wall by Jen Minkman
  • TV watched – Nailed It, Ultimate Beastmaster, Great British Bake Off, Black Adder on Netflix
  • YouTube videos watched – Tom Scott and Vi Hart
  • Streams watched – Penguin Cam
  • Music listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – Lots 🐧🐧🐧
  • Johan hand holds – Yup
  • Johan hugs – Yes!
  • Time on Twitter – 9 hours 3 minutes (average 1 hour 17 minutes a day)
  • Time on Reddit – 12 hours 17 minutes (average 1 hours 45 minutes a day)
  • Time on Facebook – none
  • Other –
    • Broke my tablet. Took hours to fix it.
    • Mostly slept or was sleepy.
    • Saturday was awesome.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 86
  • Godville Heroine Level – 51 (93% done)
  • Godville wood for ark – 16.1%
  • Godville savings – 668 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing: Pocket Camp (7 hours 34 minutes, average 1 hour 4 minutes a day)
  • Other –
    • Finished the Animal Crossing event with a day spare.
    • Worked on an Easter cross stitch but didn’t complete it.
Danni

Week 13 Update

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

Danni is in bed, and has clean, tidy short hair. They are smiling, and wearing a purple t-shirt saying

Overall had a very good week. Lots of exciting things happened and I wasn’t too bad physically for me. I’m happy 🙂

I didn’t manage to get out of bed, but on Tuesday I had my first proper hair wash of the year! I’m not sure exactly how long it had been, but definitely a few months. I want it to be shaved off as soon as I’m able to find someone to do it (or get to the barbers).

On Tuesday evening I went on the Surface and managed to do a food shop. Took me hours and I missed some items, but it was needed as we were running out of everything. Johan not being able to do food shops is an issue, and I’m not sure how to fix it. That’s also when I changed the blog theme and sorted out some stuff that can’t be done on my tablet.

Wednesday I went to sleep in the early afternoon, and I woke up early on Thursday from tramadol withdrawal as I’d not had any for over 16 hours (Wednesday morning before Johan left for his day service). That wasn’t fun but luckily it calmed down after a couple of doses more on time, and slept more. The big event for Thursday was seeing Vicky! I hadn’t seen her in a long time and it was good to catch up. We ended up having Indian food for tea and it was nommy.

Friday I mostly slept. Woke up in time for the evening carers and had fish and chips as it was Good Friday. I wanted hot cross buns but despite several reminders, Johan failed to get me any (and I’d forgotten to put them in the food shop). The fish and chips were good, and the penguins were very happy with my food choice 😛

Easter Sunday was another sleepy, peaceful day, though I had been on the Surface during the early hours working on spreadsheets (one for Animal Crossing, one for my carers). I also reset my level and stuff in Habitica as wanting to start again in my own party. Johan gave me a Thorntons fudge easter egg which I really like, and I had got him a Ferrero Rocher egg (which since I bought it in the shop he put away, I had to tell him not to look at it :P). I also looked up April Fools stuff online before sleeping through. I miss going to church but I don’t think God minds.

There were a couple of bad things during the week (other than the tramadol withdrawal). We got several letters telling us how much bills were going to go up by, including the care agency putting up the hourly rate by about £1.50 an hour (I get 17 1/2 hours a week), the rent going up by about £5 a week, and our care costs to social services going up from about £10 a week to over £40 a week each. The first two we could manage (even without a direct payment increase – we’ve not been told if that’s going up at all) but the last one is just too much. We’ll be keeping my care because we both need it, but we’re unsure about Johan and his day service. He’s going to try and sort it out this week and see what we can do.

The other bad thing is I had a new care worker who despite being told I can’t deal with perfume or strong scents, came in with so much on I could smell her before she even came into the flat. She came a couple of steps into my bedroom before I told her not to, and my body went mad, with a headache, breathing difficulties, and an itchy rash. That’s despite putting my face mask on soon after having my teeth brushed by the other, non-stinky care worker. Johan also had to hide under his quilt as he’s asthmatic. I’ve not had a reaction that bad since I started taking cetirizine regularly but it was horrible. I’ve asked one of the other care workers to tell the office I can’t have her, and Johan is going to try and contact them himself if he can. She’d been warned by at least three other care workers before she came so I don’t understand why she put so much on.

I’m still on a high from seeing Vicky and having my hair washed properly. I’m hoping that if we can avoid care workers who make me more ill that I’ll be able to do more soon 🙂

  • Overall mood – Good, with some Awesome.
  • Average daily sleep – 7 hours 58 minutes (of 10 hours 11 minutes)
  • Longest sleep – 12 hours 17 minutes from Wednesday afternoon to Thursday morning (of 18 hours 10 minutes)
  • Clothes changed – 2 (Not All Disabilities are Visible and The Future is Accessible)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1, with actual water and shampoo and everything!!!
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – Vi Hart
  • Streams watched – 0
  • Music listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – Yup 🐧🐧🐧
  • Johan hand holds – Several a day 🙂
  • Johan hugs – not yet
  • Time on Twitter – 8 hours 14 minutes (average 1 hour 10 minutes a day)
  • Time on Reddit – 20 hours 48 minutes (average 2 hours 58 minutes a day)
  • Time on Facebook – 1 hours 56 minutes (average 16 minutes a day)
  • Other –
    • Lots of marmalade on toast for lunch, as body has decided it doesn’t like cheese for some reason
    • Still working on my blog theme. I need to work on accessibility as well, and update pages as they’re way out of date now 😛
    • I’m so happy I got to see Vicky! And that I had my hair washed!
    • Carer spreadsheet is very useful. I just need to update it more often so I can add in any changes to the rota (including if I was given notice)
    • Been having issues with my tablet. If it reboots for any reason, it loads the boot screen, then reboots into recovery. I need to delete the cache to fix it.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 85
  • Godville Heroine Level – 51 (51% done)
  • Godville wood for ark – 15.0%
  • Godville savings – 624 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing: Pocket Camp ( hours minutes, average hours minutes a day)
  • Other –
    • On top of the Mario event, there’s another bug catching event in Animal Crossing. This time we’re catching Scramblers, which are Easter eggs with legs.
    • Had to update my Animal Crossing spreadsheet because about 20 of my in game friends are sharing eggs with legs. I’m trying to return what they give me but it’s hard.
    • DragonVale still has their Easter event on. I’ve completed everything that isn’t the Rift. When it finishes I might be taking another break (until the next event).
    • Am working on an Easter cross stitch right now, but finding it slower as my hands are being clumsy.
    • Still haven’t got the memento from Hermeowne. It’s the last one I need!
Danni

Week 12 Review

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

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 🙂

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.