Week 13 Update

Danni is in bed, and has clean, tidy short hair. They are smiling, and wearing a purple t-shirt saying "Not all disabilities are visible" in white writing. Above the writing there are symbols of a person walking, a person self propelling a wheelchair, and a person walking with a stick.

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

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 πŸ˜›

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 aΒ 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 Β£1.50 an hour (I get 17 1/2 hours a week), the rent going up by about Β£5 a week, and our care costs to social services going up from about Β£10 a week to over Β£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 πŸ™‚

  • 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 πŸ™‚
  • 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 πŸ˜›
    • 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 (59% 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!

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 11 Review

Danni is lying in bed, wearing a blue penguin scarf over their hair. They are smiling.

Not the best week, but it could have been worse. Photo was taken today as I forgot last week.

I’m not sure why my body is complaining so much, but it’s getting annoying. My digestive system is misbehaving more than normal, meaning I’m needing to take my antiemetic more frequently. I really hate how dopey, tired and out of it I am when having it, but it’s still preferable to being sick. On Wednesday I had a migraine which really didn’t help, and on Sunday a strong non-migraine headache that’s worse than the normal headache I have all the time. Medication is helping but I want to be back to Danni normal.

I felt so rotten at the beginning of the week I didn’t even play my easiest games. I mostly looked at cute pictures on Reddit and wished my body would behave enough to let me sleep (it did eventually). Johan was really understanding and helped me as much as he could. I’m grateful I was able to sleep most of the way through the migraine on Wednesday afternoon as it was really hard to deal with on top of everything else. Wednesday Johan stayed home until I was able to sleep, and Thursday he stayed until he knew my antiemetic was working. I’m really grateful for that.

I did have a good day on Saturday. I couldn’t tolerate touch or movement, but was well enough to watch YouTube and Netflix with Johan. We wanted to get pasta from our favourite Italian restaurant but they’ve stopped delivering here, so ended up getting a McDonalds instead. It was a good day overall. Then Sunday came and gave me a different type of headache for some reason. At least I was able to sleep more than last week.

I’m hoping this week will be better, though my digestive system still isn’t behaving (not that it does normally but it’s usually not this bad). I’m desperately in need of a body and hair wash but even pad changes have been horrible to deal with. Hopefully soon.

  • Overall mood – Good (a few mehs in there but even though my body wasn’t doing good my mood wasn’t too bad)
  • Average daily sleep – 8 hours 58 minutes (of 10 hours 25 minutes)
  • Longest sleep – 9 hours 30 minutes from Tuesday evening to Wednesday morning (of 12 hours 9 minutes – slept again less than 7 hours later)
  • Clothes changed – 0
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched – Hell’s Kitchen on Netflix
  • YouTube videos watched – Flopotron, Tom Scott, Vlogbrothers, Vi Hart, How to Adult
  • Streams watched – 0
  • Music listened to – World of Warcraft Cataclysm soundtrack
  • Blog posts written – 0 (too ill)
  • Penguins cuddled – Lots 🐧🐧🐧
  • Johan hand holds – yes
  • Johan hugs – still too ill
  • Time on Twitter – 5 hours 43 minutes (average 49 minutes a day)
  • Time on Reddit – 33 hours 43 minutes (average 4 hours 49 minutes a day)
  • Time on Facebook – 11 minutes (average 1 minute a day)
  • Other –
    • Reddit is awesome when I’m not doing good. Lots of cute pictures.
    • As cheese really isn’t great when tummy being silly, had lots of buttered toast for lunch.
    • I am very smelly but touch and movement are really painful and overwhelming. I’m hoping to get sorted soon.
    • Bought a Samsung T5 500GB external SSD. It’s so cute and small, and really fast. I’m using it for tablet backups at the moment.
    • Swapped from stock rom to resurrection remix on my tablet. I like the extra customisation options, though trying to format /system in TeamWin kills it and needs to be fixed on a computer. Johan is getting good at that.
    • Sammie continues to be awesome.

Game stuff

  • Games played – 6
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
    • Color Puzzle
  • AC: Pocket Camp Level – 82
  • Godville Heroine Level – 50 (84% done)
  • Godville wood for ark – 12.2%
  • Godville savings – 543 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing: Pocket Camp (11 hours 21 minutes, average 1 hours 37 minutes a day)
  • Other –
    • Didn’t play any games Monday – Wednesday as not feeling well enough, even for easy ones like Godville.
    • Animal Crossing has a Mario event and a fishing tournament at the moment. I’ve got all items from them both so far.
    • Played less than half an hour each of every game other than Animal Crossing.
    • Color Puzzle is a I Love Hue clone. It’s not as good but okay while I’m waiting for new levels.

Week 10 Review

Danni is lying on their side in bed. They look ill.

Danni is lying in bed in their back. They are smiling. The image is tinted purple from a light behind the bed.

A week late due to not being very well. The week was rather mixed, with good bits and bad bits. Photos by Johan as he was testing his new phone camera – the first I’m feeling completely rubbish and the second a bit less rubbish and happy because of Sammie.

Good bits included Esther visiting, having pies for pie week, Sammie being awesome and spending time with Johan. Bad bits were mostly being more ill than normal, needing my antiemetic more than I usually do and having a lot of pain that was difficult to deal with. I also missed a CFS team visit as Johan forgot to put it in the calendar and I can’t open the door.

Seeing Esther on the Saturday was awesome. She’s moving next month so it’ll probably be a while before I see her again, but it was a lot of fun talking to her and hearing her plans. I really hope everything goes well for her.

Sammie showed us some of her pictures, which I really like. She’s definitely improving which is awesome. She sent me a present for Mothering Sunday which made me happy. I refused to open it on Saturday, but did so on Sunday and ended up crying with happiness as I loved it that much. I could tell she’d put a lot of thought into it. I’m really proud of her.

  • Overall mood – Good (a few mehs and an Awesome on Sunday)
  • Average daily sleep – 7 hours 25 minutes (of 9 hours 32 minutes)
  • Longest sleep – 12 hours 14 minutes from Friday evening to Saturday afternoon (of 17 hours 16 minutes)
  • Clothes changed – 1 (Purple t-shirt with penguin riding a dinosaur and cat fleece)
  • Wipe wash – 0
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – 0
  • Streams watched – 0
  • Music listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – indeed 🐧🐧🐧
  • Johan hand holds – yes
  • Johan hugs – nope
  • Time on Twitter – 11 hours 53 minutes (average 1 hour 41 minutes a day)
  • Time on Reddit – 16 hours 47 minutes (average 2 hours 23 minutes a day)
  • Time on Facebook – 1 hours 5 minutes (average 9 minutes a day)
  • Other –
    • Managed 3 meals on Monday. This was an achievement.
    • By Tuesday morning I was regretting it.
    • Needed extra meds a few times. I hate how I feel when I’ve taken them but it’s preferable to being in intolerable pain and throwing up.
    • Had Esther handhold while she was here as not well enough for hug.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 80
  • Godville Heroine Level – 50 (46% done)
  • Godville wood for ark – 10.6%
  • Godville savings – 502 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (15 hours 31 minutes, average 2 hours 13 minutes a day)
  • Other –
    • Finished the Animal Crossing ladybird event with a day to go. My in game friends are awesome.
    • New Easter event in DragonVale. I’m playing it every few days.
    • Swapped to Mother’s Day cross stitch patterns for a bit.

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.
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