Category: Physical Disability

Danni

Week 18 Review

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

Danni is in the their wheelchair outside a polling station. They are wearing sunglasses, a purple hoodie with the hood up, and a purple sparkly blanket. On their lap are two grey penguins. They have a penguin neck cushion around their neck and their right hand is next to their ear.

Johan has this annoying habit of taking photos of me when I’m not ready, and then not taking another when I am.

Mostly a good week, other than my wheelchair breaking on Thursday while going out to vote. It’s getting sorted but I don’t know how long it’ll take.

My body seems to have given up entirely on having a sleeping pattern. I wake up every hour or so to roll over and sometimes have a drink, but will go back to sleep quickly as I can’t stay awake. I had some very long sleeps this week.

Good things that happened include using a fork for the first time in a while (and I’m still paying for it in extra pain in my wrist, but I wanted curry and rice). I watched Liverpool beat Roma to get to the final of the Champions League. I went out to vote (and the person I voted for won). Had banana sammich, twice. Had a hug with Johan! Went on the Surface for a while and managed to video chat with Sammie and do a food shop.

When going out to vote on Thursday, the front wheel of my wheelchair hit the kerb and bent the fork holding it, which means it’s not working properly. Johan got me in to vote and then home okay, and everyone we saw either offered to help or wished us luck. It means I’m not going anywhere until it’s repaired, which is sucky. Hopefully it won’t take too long.

I’ve decided I’m just going to use Sleep as Android and Smarter Time for sleep tracking for now, as it’s more accurate than my watch. I wish Garmin used heart rate for sleep as it’s blatantly obvious when I’m asleep looking at my heart rate history, but it’s trying to just use movement and I don’t move enough. I suspect the deep sleep percentages are overestimating (as it says I’m in light sleep when I’m awake) but I’ll record them anyway. The good news is I apparently don’t snore.

  • Overall mood – Good
  • Average daily sleep – 11 hours
  • Longest sleep – 21 hours 14 minutes from Saturday morning morning to Sunday morning (Deep sleep: 55%)
  • Clothes changed – 2
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0 (need to give my scalp a scrub as soon as I’m well enough)
  • Books read – 1 (Finished The Miracle Inspector)
  • TV watched – Roma against Liverpool. They weren’t able to score enough goals so Liverpool are in the Champions League finals.
  • YouTube videos watched – As Seen on TV product reviews
  • Streams watched – 0
  • Music listened to – Rainbows and Unicorns from Vostok Inc. OST (I like it)
  • Blog posts written – 1
  • Penguins cuddled – yes 🐧🐧🐧
  • Johan hand holds – yes
  • Johan hugs – Yes! I got one on Thursday! I wish they didn’t hurt so much.
  • Time on Twitter – 4 hours 39 minutes (average 39 minutes a day)
  • Time on Reddit – 10 hours 12 minutes (average 1 hour 27 minutes a day)
  • Time on Facebook – 19 minutes (average 2 minutes a day)
  • Other –
    • I am not coping well with not having my wheelchair. Johan asking me if he should eat out after his runs is making me very jealous.
    • I did have a half hour antinap during that epic sleep on Saturday/Sunday, where I had meds and things. Was still half asleep though.
    • My biliary system decided to join in with the spasmy pains after leaving me alone for a while. I’m not impressed.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • Bury Me, My Love
  • AC: Pocket Camp Level – 95
  • Godville Heroine Level – 53 (8% done)
  • Godville wood for ark – 20.3%
  • Godville savings – 840 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (8 hours 11 minutes, average 1 hour 10 minutes a day)
  • Other –
    • New flower event in Animal Crossing started on Friday. Apple butterflies that like strawberries apparently.
    • Finished the first play through of Bury Me, My Love by speeding it up. My Syrian wife got asylum in Sweden, but only because she was filmed being beaten by the police. I started a second but I think I’m going to leave it a bit as it’s emotional.
    • Not wanted to play DragonVale this week. Need to remember I’m not obligated to do so.
Danni

Week 17 Review

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

Danni is lying in bed wearing a purple top saying "trans and tired" with "zzz" above. They look tired.

I remembered to take a photo! I was rather tired so the top was accurate 🙂

This week I was mostly recovering from going out last week. Lots of sleep, lots of lying in bed not moving as it was too exhausting and painful, but as it was expected it was mostly okay.

A Garmin watch. On the screen there is a cartoon picture of penguins, with the time below, the battery meter above and date to the right.On Monday I bought a new fitness watch. I decided to get the Garmin Forerunner 235 mostly because Johan had one and it seemed to fit my requirements. For heart rate tracking it’s much better than the Fitbit Charge HR (or Charge 2), actually noticing when my heart rate is all over the place rather than averaging it out. I love being able to change the watch face and being able to install apps on it to do various things. The downside is that it’s not as good at tracking sleep, probably because I don’t get up when I’m awake. I’ve tried using Sleep as Android with it which is a bit better, but it still records me being in deep sleep sometimes when I’m actually awake. If needs be I can go in and look at the movement, heart rate and noise data to work out when I was awake, but for my blog I’m just going to record the hours I’m asleep as it’s not as easy as the FitBit. The watch face uses a picture Sammie made me which I love 🙂

I had to call Johan home a few times because of my digestive system being evil, to the point where he’s now asking the care agency for an extra call in the afternoon, taking some time from my evening call as the evening care workers are too efficient 😛 I’ll probably need to rethink times when I’m well enough for regular showers, but that doesn’t seem likely for a while so the extra call will be more useful.

I was a bit grumpy at the weekend. Didn’t realise for a while but it turned out I had a migraine (how I missed not being able to see properly out of one eye I don’t know, but it happened). Luckily once we figured it out Johan dosed me up on meds and after a couple of days I was okay, just drained.

When I was awake, I managed to finish one book and start another, complete a couple of cross stitch patterns on the app, and also listen to some music. The official soundtrack for Vostok Inc. has finally been released, and I’ve listened to track 4, Rainbows and Unicorns, quite a bit. It’s my favourite music from the game and makes me happy 🙂 The Soundcloud page is https://soundcloud.com/nosebleedinteractive.

Hopefully I won’t get as far behind in these blog posts again. Maybe one day I’ll even post something different 😛

  • Overall mood – Good, with a few Mehs when I had the migraine.
  • Average daily sleep – 10 hours 25 minutes (how much is real, I don’t know :P)
  • Longest sleep – 15 hours 32 minutes from Wednesday early morning to Wednesday evening.
  • Clothes changed – 0
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 0 (need to give my scalp a scrub as soon as I’m well enough)
  • Books read – 3 (Finished Shatter Me, finished Destroy Me and started The Miracle Inspector)
  • TV watched – Liverpool against Roma as they were scoring a lot of goals.
  • YouTube videos watched – Tom Scott, Vi Hart and Physics Girl
  • Streams watched – Penguin Cam
  • Music listened to – Rainbows and Unicorns from Vostok Inc. OST
  • Blog posts written – 3 (got caught up)
  • Penguins cuddled – yes 🐧🐧🐧
  • Johan hand holds – needed
  • Johan hugs – nope
  • Time on Twitter – 6 hours 14 minutes (average 53 minutes a day)
  • Time on Reddit – 14 hours 16 minutes (average 2 hours 2 minutes a day)
  • Time on Facebook – 1 hours 59 minutes (average 17 minutes a day)
  • Other –
    • I’m glad reading is a bit easier at the moment. Having a Kindle with changeable font size is awesome.
    • Destroy Me was a lot harder to get hold of than I was expecting, but I really wanted to read it after finishing Shatter Me.
    • I wish my digestive system would decide what it’s doing. Swapping between constipation and diarrhoea makes it really hard to work out what’s best to do.
    • New care workers are hard work, but I’m glad I now have an information book to give them.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • Bury Me, My Love
  • AC: Pocket Camp Level – 93
  • Godville Heroine Level – 52 (71% done)
  • Godville wood for ark – 19.4%
  • Godville savings – 773 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (7 hours 37 minutes, average 59 minutes a day)
  • Other –
    • New animals in Animal Crossing make it much easier to gain level (though the max level also goes up with them).
    • The current event (other than fortune cookies which I’m mostly ignoring) is Gyroidite Gathering. They’re not exactly well hidden and I’ve already crafted all the items that use them.
    • Bury Me, My Love is an interactive story where you’re the husband of a Syrian woman escaping to Europe as a refugee. The title is based off a Syrian saying, which pretty much means “don’t die before me”. It’s rather emotional and I like the semi-real time play style.
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.