Category: Week in Review

Danni

Week 32 Review

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, Week in Review, World of Warcraft
A screenshot from Animal Crossing Pocket Camp. There is a black faced penguin with crosses for eyes and has blue wings on the left, who is wearing a purple top with a large yellow star. On the right there is a pale skinned human with a beak and purple hair, wearing a purple and white top. They are wearing matching purple caps. The text says, "Cube and I are matching! This isn't weird at all!".
Forgot to take a photo so a screenshot from Animal Crossing instead. Penguins are awesome.

This week has mostly consisted of playing World of Warcraft and sleeping. I am so happy to be able to play WoW again. I’m doing okay so long as I don’t move, and being on my computer requires very little movement. I’m also very happy to be home.

Most of the WoW stuff I played was the Battle for Azeroth pre-patch events. Darkshore being invaded by the Horde was hard emotionally as my main character has always been a Night Elf Priestess, but the destruction of Darnassus made me cry. The quest A Flicker of Hope was heartbreaking, knowing that there was no possible way to save everyone. I might have helped save Azeroth from so many different threats, but I couldn’t save my home. I liked the Silithus quests that explained why my artifact weapon was no longer super powerful, but I wished there had been more to it. I’m looking forward to the new expansion next week. Sylvanas must go.

I also convinced Johan to resubscribe to WoW, after saying he would never do so again 😛 He has a lot more catching up to do than me.

Outside of WoW, I’ve not done much. I wrote a blog post for Severe ME day, which took me so long it ended up being posted the day after. Writing that was a ton more draining than playing WoW, so I had to come off puter afterwards. I’m glad to have written it, and eventually I’ll be linking it as it’s more up to date on how ME affects me.

I ended up with a migraine on Saturday, which almost wrote the weekend off. I’m lucky that so long as we dose me up with all my medication I can sleep through the worst of it. Our new upstairs neighbours have been arguing a lot which isn’t great. I know our other neighbours are just as fed up and we’ve got to keep a record of when it happens. I’m hoping they stop, though preferably without one of them being murdered (which happened to our original noisy upstairs neighbours). 

  • Overall mood –Mixture of good and awesome. Mostly high symptoms, probably because of the care home.
  • Average daily sleep – 10 hours 32 minutes
  • Longest sleep – 15 hours 32 minutes from Saturday afternoon to Sunday morning (deep sleep 54%)
  • Clothes changed – 1
  • Wipe wash – 1
  • Water wash –  0
  • Hair wash – 0
  • Books read – 0 (I’ve managed to misplace my Kindle)
  • TV watched – None (playing WoW instead)
  • YouTube videos watched – Some
  • Streams watched – 0
  • Music listened to – 0
  • Podcasts listened to – 0
  • Blog posts written – 1 (Severe ME Day)
  • Penguins cuddled –  Yes!
  • Johan hand holds – Indeed!
  • Johan hugs – 0
  • Time on Twitter – 5 hours 47 minutes (average 49 minutes a day)
  • Time on Reddit – 22 hours 8 minutes (average 3 hours 9 minutes a day)
  • Time on Facebook – None tracked
  • Other –
    • I forgot to set up tracking on my desktop computer so although I did spend time on Facebook, I don’t know how long. I have fixed that.
    • I’ve not been putting much in my daily diary. Too much WoW playing 😛
  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • World of Warcraft
  • AC: Pocket Camp Level – 117
  • Godville Heroine Level – 57 (74%)
  • Godville wood for ark – 35.8%
  • Godville savings – 1 million, 536 thousand
  • Cross stitch completed – 0
  • Most played game – World of Warcraft (27 hours 19 minutes, average 3 hours 54 minutes a day)
  • Other –
    • World of Warcraft is definitely my favourite game.
    • I healed some LFR raids. I told them I was rubbish and just pressed random buttons, but a couple responded I was very good at pressing the right ones. Made me feel happy 🙂 Most of the groups were good like that.
    • I also helped try and take over Undercity/Lordaeron. Sylvanas destroyed it as well.
    • Completed the Flutterfly event in Animal Crossing with a day to go.

Danni

Week 31 Review

Autism, Danni, Gaming, M.E., Physical Disability, Real Life, Week in Review, World of Warcraft
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 🙂 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. 

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 🙂 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 😛

  • 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 Netflix 
  • 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.
Danni

Week 30 Review

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

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 😛

  • 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 😛

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.
Danni

Week 29 Review

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

Danni and Johan are outside. They are both smiling.

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

Two photos! One outside our front door before travelling to the care home, one in my bedroom in the care home.

Been a bit of a mixed week. Monday I was preparing to go into the care home, and Tuesday was the day I went in. During the day it’s mostly been okay after resolving some misunderstandings (I asked for hourly checks as I’m not able to use a buzzer, and they thought that meant waking me up every hour). Night time, not so much. There aren’t enough staff for someone to check on me hourly, and that means lots of pad leaks and needing entire bed/clothes changes and washes, which make me feel horrendous.

Johan is in Sweden for ESA Summer (ESA as in European Speedrunning Assembly, not one of the other ESAs). I’d much rather be with him or at home, but that’s not an option so I get to stay in a care home for a couple of weeks instead. The staff are fine, but it’s not home and they’re not really used to someone like me (mostly able to communicate but needing prompting for things I need). This time I brought the Surface and my normal Tablet, and I had downloaded some shows to watch to save the data on my phone.

Didn’t get out of bed this week after arriving, mostly because of feeling rotten from the journey/needing lots of bed changes/exhaustion from trying to cope with a new environment, new people and stuff. My room is really hot and I didn’t think to bring a fan. I do have Poseidon, Primrose, Nicky and Isabella with me and have been talking to Johan and Sammie through Hangouts. I’ve also spent far too much time on Reddit, as it’s the only thing I can concentrate on at times.

  • Overall mood – Mostly good with high symptoms, as was only tracking once a day.
  • Average daily sleep – 10 hours 29 minutes
  • Longest sleep – 18 hours 57 minutes from Saturday night to Sunday evening (deep sleep 61%)
  • Clothes changed – 4
  • Wipe wash – 1
  • Water wash – 3
  • Hair wash – 0
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episode 3
  • YouTube videos watched – Lots
  • Streams watched – Penguin Cam and stuff on Twitch
  • Music listened to – Random selection from Google Play while travelling to care home
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled –  Yes 🐧🐧🐧
  • Johan hand holds – A few before he left
  • Johan hugs – 0
  • Time on Twitter – 9 hours 1 minutes (average 1 hour 17 minutes a day)
  • Time on Reddit – 33 hours 1 minutes (average 4 hours 43 minute a day)
  • Time on Facebook – 5 minutes
  • Other –
    • Migraines are evil. Had to cancel a visit because of one.
    • It’s noisy here, especially as some residents have dementia and spend most of their time shouting or screaming. Still better than our upstairs neighbours at home though (as it’s not arguing).
    • Wanting chocolate but Amazon is rubbish for it.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 115
  • Godville Heroine Level – 56 (75% done)
  • Godville wood for ark – 33%
  • Godville savings – 1 million, 396 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (4 hours 10 minutes, average 35 minutes a day)
  • Other –
    • New Gyrodite event in Animal Crossing. Not been concentrating much on it.
    • Not been playing much of my other games either, mostly logging in for daily bonuses and that’s it.
Danni

Week 28 Review

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

Danni smiling with clean hair.

I had a proper hair wash so celebrated with a photo 🙂

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.