Week 20 Review

Danni lying in bed, sticking out their tongue.

I remembered to take a photo! I was rather tired but feeling silly.

This week I figured out how to listen to podcasts, and even understand them ๐Ÿ˜€ It’s a three stage process but it works for me.

  1. Listen to the podcast on a speaker (currently my Google Home Mini). This is less overwhelming than on headphones.
  2. Do something on my tablet that doesn’t involve language, such as cross stitch. This is to distract my brain from the auditory hallucinations that usually prevent me from hearing what I’m listening to properly.
  3. After the podcast episode has ended, go read the transcript so I can understand what was happening and see what I missed. It sometimes takes a few reads but it does go in eventually.

I’ve spent a lot of time this week listening to Welcome to Night Vale, which is the podcast I’ve been wanting to listen to since I first heard of it. I’m really enjoying it, and have also got Johan listening to it. Only problem is I’m a bit ahead of him so I’m having to try and remember what would be spoiling him ๐Ÿ˜›

Bodywise it’s been a mixed week. Still no sign of an actual sleeping pattern, and had more digestive issues than my normal which isn’t fun. Johan has also had a mixed week, mostly because he had to fill in my ESA50 form (explaining that I’m not well enough to work so we keep getting money) and it made his brain break. On the upside, he ran the Pier to Pier race and did really well, then stayed out with his friends until the evening as I’d gone to sleep.

Wheelchair fixy person came out to look at my wheelchair, and has taken the broken bit with him in an attempt to find a matching part. Not heard back from him yet, but I’m hoping he’ll be successful as I’m hoping to get out of bed soon, especially as the weather is getting nicer.

I started having the new afternoon care call this week, so I don’t have to call Johan home as early unless something goes wrong. It’s the first time the care workers are giving me medication, which is fun as I try to describe which ones I need (as technically my tramadol is as needed, so doesn’t go in a dosset box). I’m thinking of asking Johan to put it in my pill box so it’s easier for both of us, especially when I need my antiemetic as small round white pills are hard to tell apart and the writing on the blister packs is very small.

The calls seem to be working, though I had a new care worker who hadn’t been told I don’t cope with them being early (I can just about cope with up to 15 minutes before the call time, she arrived 20 minutes before) so I ended up panicking, but luckily Johan was in at the time so he explained things to her and helped sort me out afterwards.

Friday was four years since the last time I stood up (and took three wobbly steps with a zimmer frame). I was really hopeful that it was the start of improving, but I ended up getting worse again soon afterwards. Between that and the ESA50 form, where Johan ended up telling me I’m doing worse now than I was last time, it’s been a little hard realising how long I’ve been ill for and that I’ve not really improved. I have stabilised a bit, as though I still get payback in general I spend less time paralysed and can usually manage to chew solid food, so except during relapses I don’t get quite as bad. I suspect not having noisy neighbours helps a lot with that as I can mostly rest when I need to. It hasn’t really affected my mood, just made me think.

Bought a new wrist support as floppiness was getting really annoying, after asking for suggestions on Twitter. It definitely seems to be helping, and on a good hand day I’m going to see if I can use it with cutlery to feed myself without making it harder the next day. Here’s hoping.

  • Overall mood – Good
  • Average daily sleep – 10 hours 1 minutes
  • Longest sleep – 17 hours 42 minutes from Friday morning to Saturday morning (62% deep sleep)
  • Clothes changed – 1 (Trans and Tired)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0
  • Books read – 1 (Continued Operation Hail Storm)
  • TV watched – 0
  • YouTube videos watched – 0
  • Streams watched – 0
  • Music listened to – Rainbows and Unicorns
  • Podcasts listened to – Welcome to Night Vale (Episodes 1 – 20)
  • Blog posts written – 1
  • Penguins cuddled – Yesย ๐Ÿง๐Ÿง๐Ÿง
  • Johan hand holds – Lots demanded and received
  • Johan hugs – nope
  • Time on Twitter – 3 hours 35 minutes (average 30 minutes a day)
  • Time on Reddit – 23 hours 32 minutes (average 3 hours 21 minutes a day)
  • Time on Facebook – 25 minutes (average 3 minutes a day)
  • Other –
    • Sorted out the bags on my bed rails. Somehow managed to get a full carrier bag of rubbish out of them. Hopefully this will stop me losing things quite as much.
    • Finally got around to plugging in the electric blanket on the other side of the bed. Not being strangled by the cable when having personal care is good.
    • Having a default list of meals came in handy when Johan’s brain broked. I was able to order him food from McDonalds without him having to decide.
    • Sammie is awesome. She made curry and invited us to eat it. If only we weren’t so far away.
    • My phone decided it wanted to become a balloon, so I had to stop using it. Johan gave me his old Oneplus 3 instead, which I used to take the photo.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 99
  • Godville Heroine Level – 53 (73% done)
  • Godville wood for ark – 22.1%
  • Godville savings – 917 thousand
  • Cross stitch completed – 5 (easy to do when listening to podcasts at the same time)
  • Most played game – Cross Stitch (9 hours 7 minutes, average 1 hour 18 minutes a day)
  • Other –
    • New animals in Animal Crossing and a new fishing event. Managed to do most of the fishing event on the first day as couldn’t sleep.
    • Added random stuff to my Animal Crossing spreadsheet as I like doing data entry. Currently working on how many of each type of clothing I have.

Week 19 Review

A screenshot from Animal Crossing Pocket Camp, where there is a celebration for completing an event.

Forgot to take a photo (or have one taken) but I screenshotted completing the last flower event so it’s virtual me.

Had a good week. Mostly watching YouTube videos and Eurovision (both semi finals and the final). Overdid it a bit watching Eurovision but the payback is worth it (though led to this post being rather late). I enjoyed most of the performances during Eurovision, and didn’t have a specific favourite, but was okay with the results. Surie did amazing during the stage invasion and I agree she didn’t need to perform again. Johan was hoping for Moldova to win, and I think they had the best stage performance. We’re both concerned about the competition being in Jerusalem next year, and think it should be in Tel Aviv instead.

I couldn’t feel my feet properly on the Saturday, so I took advantage of it and asked Johan to help me get some of the buildup of dry skin off my feet (the care workers are so scared of hurting me they don’t use any force, so I end up with yellow hard patches as I’m not well enough to wash regularly). It feels so much nicer to have it all removed. Next up is all the dry skin on my scalp, but that tends to be more sensitive. I’m hoping to get at it before my hair grows too long.

Wheelchair is still not fixed as the wheelchair fixy people are struggling to find the right parts. Hopefully we’ll hear back from them soon. I’ve not really been well enough to go out anyway, especially with watching Eurovision.

  • Overall mood – Good
  • Average daily sleep – 11 hoursย  3 minutes
  • Longest sleep – 14 hours 57 minutes from Sunday morning to Sunday evening (Deep Sleep 59%)
  • Clothes changed – 1 (Space Rhino from Vostok Inc.)
  • Wipe wash – 1
  • Water wash – 1 (feet only)
  • Hair wash – 0
  • Books read – 1 (Started Operation Hail Storm)
  • TV watched – Eurovision (both semis and the final)
  • YouTube videos watched – Mr Puzzle and Tom Scott
  • Streams watched – 0
  • Music listened to – Rainbows and Unicorns, Hank Green
  • Blog posts written – 1
  • Penguins cuddled – Mostly Phoebe and Nicky, but some Poseidon and Primroseย ๐Ÿง๐Ÿง๐Ÿง
  • Johan hand holds – Yes!
  • Johan hugs – nope
  • Time on Twitter – 7 hours 35 minutes (average 1 hour 5 minutes a day)
  • Time on Reddit – 11 hours 52 minutes (average 1 hours 41 minutes a day)
  • Time on Facebook – 36 minutes (average 5 minutes a day)
  • Other –
    • Managed to feed myself with a spoon. Result was a less functional hand the next day. Whoops.
    • Banana sammiches are yummy. Had them a few times.
    • Mini stroopwafels are the best.
    • Smelly care workers are not good for Danni at all. Triggering an allergic reaction is impressive since I take a daily antihistamine, but really unpleasant. Johan has asked for her not to be sent again but has yet to get a response back.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 96
  • Godville Heroine Level – 53 (37% done)
  • Godville wood for ark – 21.4%
  • Godville savings – 883 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing: Pocket Camp (9 hours 12 minutes, average 1 hour 18 minutes a day)
  • Other –
    • Spent lots of time on Animal Crossing to finish the event. Did so with about half a day left.
    • Didn’t play much of other games due to using all my energy on Eurovision.

Week 18 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 ๐Ÿง๐Ÿง๐Ÿง
  • 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.

Week 17 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 ๐Ÿ™‚

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 ๐Ÿ™‚

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 ๐Ÿ˜› 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 ๐Ÿ™‚ The Soundcloud page isย 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 ๐Ÿ˜›

  • 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 – yesย ๐Ÿง๐Ÿง๐Ÿง
  • 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) isย 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.

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 24ยฐC. 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 ๐Ÿง๐Ÿง๐Ÿง
  • Johan hand holds – I loves ๐Ÿ’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 ยฃ2 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.