Category: Real Life

Danni

Week 26 Review

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

Note to self: Ask Johan to take a photo this week.

Spent most of the week either sleeping or watching stuff on the telly. Lots of football, lots of YouTube, and even a film. Still not completely over the payback from the shower, though movement is definitely worse than sensory stuff right now.

Tuesday was the best day- I woke up really early and needed Johan to sort me out, but we decided to stay up at that point. Johan went out and ran a half marathon about 4.30am, I got McDonalds delivered for breakfast (I wanted a cheese and egg McMuffin, which I got), and then we watched Deadpool together, which was awesome. Also had the cleaner visit, someone from the care agency with a new care plan (same as the old one but different folder), then slept all afternoon.

On Thursday I watched Doctor Who (I’m slowly getting through last year’s episodes) and saw England beat Belgium in the World Cup. I don’t like how overpaid footballers are, but do like watching it, especially with Johan so we can talk about the different hair, shoes, and the large amount of rugby tackles (seriously, what is up with the amount of rugby or wrestling tackles this tournament? Footy is meant to be a non-contact sport!).

Saturday I spoke to Sammie and one of her friends, helping out with internet stuff. Sammie’s friend said Johan and I are cool, which made me feel really good. Sunday I was watching more footy, but partway through the second game I got a horrible migraine so had to turn all the lights off and stop watching. I should have realised it was coming as I get a weird smell as an aura beforehand, but as my window is open I thought it was real.

My bed has completely stopped working, and Johan is attempting to get equipment services to fix it. They were on training when he phoned which didn’t help. Luckily it’s not completely on the floor and it’s level so it’s not as bad as it could be, but with how much I’m struggling to move at the moment I hope it’s fixed soon so I can sit myself up a bit and the care workers can raise it to make giving me personal care easier.

  • Overall mood – Good, but high symptoms, especially when moving (and had the migraine).
  • Average daily sleep – 11 hours 14 minutes
  • Longest sleep –  21 hours 21 minutes from Monday morning to Monday evening (deep sleep 56%)
  • Clothes changed – 1 (Orange Boy Fan Club)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1 (Shampoo Cap)
  • Books read – 0
  • TV watched – Lots of footy and Doctor Who Series 10 Episode 2
  • YouTube videos watched – Lots and lots
  • Streams watched – Rockhopper Penguin Cam
  • Films watched – Deadpool
  • Music listened to – 0
  • Podcasts listened to – 0
  • Blog posts written – 2
  • Penguins cuddled –  Lots, especially Nicky, Phoebe and Poseidon🐧🐧🐧
  • Johan hand holds – Tons 🙂
  • Johan hugs – Not yet. Will be well enough soon I hope
  • Time on Twitter – 2 hours 5 minutes (average 17 minutes a day)
  • Time on Reddit – 22 hours 52 minutes (average 3 hours 16 minutes a day)
  • Time on Facebook – 22 minutes (on Tuesday)
  • Other –
    • Really happy to be well enough to watch things now.
    • Even better when Johan can watch with me 🙂 He steals my wheelchair. Wish it could be all the time but eventually having him in here is too much for my body.
    • Sammie is awesome. Her friends seem cool too 🙂
    • I love being well enough to go on the Surface. So much easier to type on than my Android tablet.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 110
  • Godville Heroine Level – 55 (77% done)
  • Godville wood for ark – 28.9%
  • Godville savings – 1 million, 231 thousand
  • Cross stitch completed – 0 (just done a small amount)
  • Most played game – Animal Crossing Pocket Camp (9 hours 34 minutes, average 1 hour 22 minutes a day)
  • Other –
    • The third fishing tournament has started in Animal Crossing. I don’t think I’m gonna get all the items this time as I haven’t played enough.
    • Barely been on my other games as been watching telly instead.
Danni

Week 25 Review

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

Forgot to take a photo again this week. I blame brain fog.

Monday was my 32nd birthday. Slept through most of it, but did get to open cards and presents which were lovely. I’m incredibly lucky to have such awesome friends when I’m such a terrible one. Sammie got me an emperor penguin ornament which is two adults and a chick, which is meant to be Johan, me and Sammie (though Sammie is now significantly taller than Johan, she says it’s a younger Sammie). I also got presents and cards from my family. I’m so spoilt.

Johan has promised to get me cake from one of the many cake delivery places, but I’ve not been well enough to get it yet. Hopefully it’ll be soon. He did say on Sunday he was happy I could now hold a conversation for more than 5 minutes.

When I wasn’t sleeping, I watched quite a few things on the telly. Some of the England match on my birthday and other world cup matches during the week, YouTube videos, and finally watched the first episode of series 10. This payback has been mostly physical, and though I was still very brainfoggy I was able to figure out scores and what happened in Doctor Who with the help of reading a recap. Moving is still a bad idea though, and my hips are very sore from lying on them (as I need to be on my side to sleep or I can’t breathe). Hopefully it won’t be long before I can get out of bed and test out my repaired wheelchair.

  • Overall mood – Awesome for Monday and Tuesday, good the rest of the week. High symptoms due to shower.
  • Average daily sleep – 9 hours 37 minutes
  • Longest sleep – 17 hours 8 minutes from Wednesday morning to Wednesday evening (deep sleep 59%)
  • Clothes changed – 1 (Penguin made of penguins top)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0
  • Books read – 1 (Dear Chronic Illness
  • TV watched – 4 world cup matches (Tunisia vs England, Germany vs Sweden, England vs Panama and Japan vs Senegal), Doctor Who Series 10 Episode 1
  • YouTube videos watched – Mr Puzzle, Tom Scott, Jessica Out of the Closet, vlogbrothers, totalbiscuit (Genna), Genna Bain (old content), floppotron, scishow (I watched a lot of YouTube this week)
  • Streams watched – Train journey from Aberdeen to Penzance
  • Music listened to – 0
  • Podcasts listened to – 0
  • Blog posts written – 0 (due to brainfog – watching stuff was easier than writing stuff)
  • Penguins cuddled – Lots 🐧🐧🐧
  • Johan hand holds – Multiple
  • Johan hugs – 0
  • Time on Twitter – 1 hours 41 minutes (average 14 minutes a day – was reading but not tweeting much)
  • Time on Reddit – 18 hours 1 minute (average 2 hours 34 minute a day)
  • Time on Facebook – 3 minutes (on Sunday – wasn’t on otherwise)
  • Other –
    • Was weird week with being okay with watching stuff, but not moving. Football is good because the score stays on the screen.
    • Workmen installed a new metal lamppost outside my window. I think something went wrong as while Johan was watching the council workmen digging up the path, there was a massive spark, our lights dimmed and the council workmen were replaced by Northern Powergrid.
    • Was doing not too bad on Thursday until more workmen came, used power tools and I couldn’t get my headphones on quick enough so ended up super nauseous and bleh.
    • Now it’s installed, I like the new lamppost as it doesn’t shine in my bedroom like the old one. I wish it hadn’t made me feel so ill getting installed though.
    • Finally did a food shop on Sunday. It was well overdue.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • Huniepop
    • World of Warcraft
  • AC: Pocket Camp Level – 107
  • Godville Heroine Level – 55 (48% done)
  • Godville wood for ark – 28.4%
  • Godville savings – 1 million, 186 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (10 hours 48 minutes, average 1 hour 32 minutes a day)
  • Other –
    • New Wedding Gyroidite event. At least it’s an easy collection quest.
    • Basically given up Dragonvale for now. I’m not really enjoying it so not playing.
    • Bought Huniepop on the Steam sale after watching Genna and TB playing it on YouTube. It’s fun, though someone behaving like that in real life would be a really really bad thing. Fantasy is okay though.
    • Went into World of Warcraft on Sunday while on the Surface as there was a free weekend. Confirmed I’m really not well enough to play at the moment, but I miss it a lot. Did use my level 100 boost on my druid though, ready for when I return. Hopefully won’t be too long.
Danni

Week 24 Review

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

No photo for the same reason this is late- the shower really wiped me out.

Slept most of the week. The payback was expected but not exactly wanted. Before it got too bad, I watched quite a bit of Genna Bain’s E3 Snarkathon, which I enjoyed. It’s different with her doing it by herself but I’m glad she’s been able to continue it.

Johan phoned to reduce our TV package because we weren’t really watching anything other than the Freeview channels. They couldn’t do it until we’d replaced the old Virgin HD box with the new V6 box. Johan decided to have the new box put in my room as I have the big telly, and have the Tivo box that I already had put in the living room. That happened on Thursday which was good. It’s a lot quieter and much quicker so it’ll be worth using once I’m up to it.

I got my wheelchair fixed on the Wednesday, which I’m really happy about. I can’t wait to be well enough to use it again. Johan is also happy as he uses it to watch things on my telly with me when I’m well enough to have company 🙂

Johan did a lot of running. He missed his metro for one race because I woke him up during the night and he cancelled his alarms, and I didn’t realise until quite late. We went halves on an Uber so he could make it in time for registration and he did well in the end.

Sunday I had a migraine but luckily it was a short one. I’m so grateful that if I have all the medication (I’m allowed) that I’m able to sleep through the worst of them. The pain is bad but sometimes the ME pain is worse so I can deal.

  • Overall mood – Awesome at the beginning because shower. Good the rest of the week. High level of symptoms because of the shower (especially complete exhaustion once the payback kicked in)
  • Average daily sleep – 11 hours 54 minutes
  • Longest sleep –  17 hours 30 minute from Thursday morning to Friday morning (deep sleep 57%)
  • Clothes changed – 0
  • Wipe wash – 0
  • Water wash – 0 (that shower was exhausting)
  • Hair wash – 0
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – Totalbiscuit (which is now Genna), vlogbrothers, Jessica OOTC
  • Streams watched – Rockhopper Cam, Totalbiscuit (Genna’s E3 Sony Snarkathon)
  • Music listened to – 0
  • Podcasts listened to –  0
  • Blog posts written – 1
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Lots
  • Johan hugs – 0
  • Time on Twitter – 3 hours 24 minutes (average 29 minutes a day)
  • Time on Reddit – 11 hours 43 minutes (average 1 hours 40 minute a day)
  • Time on Facebook – 31 minutes (average 4 minutes a day)
  • Other –
    • The shower payback definitely was worse physically than cognitively, which is why I could still watch stuff when not asleep
    • Even when not asleep, spent a lot of time out of it
    • TV Tropes and Reddit are good distractions

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 107
  • Godville Heroine Level – 55 (12% done)
  • Godville wood for ark – 27.4%
  • Godville savings – 1 million, 144 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (14 hours 3 minutes, average 2 hours a day)
  • Other –
    • Completed Elegant Amenity in Animal Crossing
    • Finished adding all the clothes to my Animal Crossing spreadsheet so I can track how many of each I have (because it’s hard to do in game)
    • My pet in Godville got knocked out, but managed to resurrect it in time.
Danni

Week 23 Review

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

Danni is smiling happily at the camera in bed. They are wearing a purple Orange Boy Fan Club top with an orange cat on it.

I am so happy I had a shower! Johan took the photo after I’d been sorted out in bed afterwards.
Mostly had a chilled out week, saving energy for the Sunday as Johan promised he’d shower me if I was well enough, no matter how he felt (after I’d asked him a few times and he didn’t feel up to it). I ate a lot of ham and pease pudding sammiches, because they’re nice and I remembered to buy the ingredients when I did the food shop.

I did quite a bit of sleeping, and reading Reddit/watching YouTube/playing mobile games when not resting. Sammie confirmed that her internet was more stable which I’m happy about.

I had to call Johan home early due to digestive problems, and had issues with my legs and hips due to how long I was lying on them (I have to sleep on my side as otherwise I can’t breathe properly, and though the alternating air mattress helps a bit it doesn’t fix all the pain).

Johan ran the Blaydon Races on the 9th of June, and I was able to follow his progress via his Garmin GPS watch, which I then live tweeted because I could. He told me afterwards that I knew before he did what his time was. Garmin said he took 38 minutes 9 seconds to run 5.6 miles, but his official result was 38:04. As he was wanting to get under 40 minutes he was very happy with this. Afterwards he went out with friends and came back less sober than he left 😛

A map of Blaydon that shows last part of the route Johan took, and run information such as finishing time.

Sunday was shower day and it took until the evening for me to be well enough, but it was awesome. Found another couple of things I need to improve on the shower chair to reduce pain such as lumbar support and some sort of cushioning on the foot rests, but that shouldn’t be hard.

I do want to find out why I can’t breathe properly when the shower is on my head and neck (and face, but that seems more obvious). We’ve got it on the lowest setting and the temperature is fine, but something about it makes me really breathless. It could just be pain as even on the lowest setting each water drop hurts, but it’s less of a problem below my shoulders. Makes washing my hair interesting but at least with it being so short right now it doesn’t take long.

  • Overall mood – Good, with a normal level of symptoms most of the week, high level Wednesday and Thursday.
  • Average daily sleep – 9 hours 19 minutes
  • Longest sleep – in 19 hours 1 minute from Thursday morning to Friday evening (deep sleep 59%)
  • Clothes changed – 2 (Gender is a Universe top, Orange Boy Fan Club top)
  • Wipe wash – 0
  • Water wash – 1 (I had a shower!)
  • Hair wash – 1 (Shower! Yay!)
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – Vlogbrothers, Tom Scott, Jessica Out of the Closet
  • Streams watched – Rockhopper penguin cam
  • Music listened to – 0
  • Podcasts listened to – Welcome to Night Vale (Episodes 33-37), Uncommon Sense (Episodes 0-2)
  • Blog posts written – 1
  • Penguins cuddled – Poseidon demanded the most 🐧🐧🐧
  • Johan hand holds – Yup
  • Johan hugs – 0
  • Time on Twitter – 3 hours 59 minutes (average 34 minutes a day)
  • Time on Reddit – 18 hours 17 minutes (average 2 hours 36 minute a day)
  • Time on Facebook – 21 minutes (average 3 minutes a day)
  • Other –
    • I had a shower! It had been nearly a year since the last one so I’m still excited.
    • Have discovered most of my penguin bedding has disappeared. I hope it turns up soon.
    • TV Tropes is good to read when not feeling great.
    • Rockhopper penguin chick is called Floof because I say so (and is a big ball of floof). Floof escooped their nest this week, but ran back and hid behind parent when hoomin came.
    • This blog post is late due to payback from shower. It also was posted prematurely as I pressed the wrong button. Twice.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 105
  • Godville Heroine Level – 54 (80% done)
  • Godville wood for ark – 25.8%
  • Godville savings – 1 million, 63 thousand
  • Cross stitch completed – 5
  • Most played game – Animal Crossing Pocket Camp (12 hours 11 minutes, average 1 hour 44 minutes a day)
  • Other –
    • Completed Bumblecubes event with a day spare. Having lots of generous friends in game helps a lot.
    • I miss World of Warcraft and other PC games. I hope to be well enough to play them again soon.
Danni

Week 22 Review

Danni, Gaming, M.E., Penguins!, Physical Disability, Prisoner, Project 365, Real Life, Week in Review

Danni is lying in bed with a small smile. The image is tinted purple from the light. Johan is much better at taking photos than I am. Purple light isn’t really that great for selfies. I have stolen his t-shirt though, which makes a change from him stealing mine (the hamster and penguin do a fusion dance and turn into a porg lower down the t-shirt image).

Mostly been a sleepy week. It took a couple of days for the side effects from the extra medication to ease off, but it wasn’t too bad. I was up all through Monday night/Tuesday morning but was pretty productive during that time, updating my care instruction book and started work on a series of blog posts I’m hoping to get done soonish.

Tuesday Johan went to Sammie’s to see if we could stabilise her internet connection. Living in the middle of nowhere there isn’t much we could do about the slow speed but swapping from wifi to powerline adapters seems to have help stop it constantly disconnecting. I helped by buying them 😛 Once I did get to sleep I slept through until Wednesday evening, with small enough antinaps they’re not showing on my tracker.

Not listened to much Welcome to Night Vale as Johan wanted to catch up. He’s now ahead of me but only by a couple so hopefully I’ll catch up to him soon. I did listen to part of a Hello Internet episode but they’re too long for me at the moment (and I didn’t find a transcript so other than there being a zoo, penguins and Star Wars involved I don’t really know what was going on).

Other than sleeping, being very sleepy and working on future blog posts and some spreadsheets, it’s been a pretty quiet week. Was a little bit grumpy on Saturday as I felt well enough for a shower for the first time all year, but Johan wasn’t up to giving me one. I had a wipe wash in bed but it’s not the same (and due to various reasons mostly around not coping with care workers, more painful than the shower would have been). I cheered up by the time I filled my diary in though.

Still waiting on my wheelchair being fixed. Johan says the replacement parts have been ordered, but not heard from them yet so will be prodding him to chase them up soon. I’m wanting to have it back for my birthday – though as the last time I was out of bed on my actual birthday was 2011, I’m not sure how realistic using it is then is. I’m hopeful though and don’t have any big events I need to rest for like some other years.

I’ve decided to start tracking my symptom levels along with my mood, as otherwise it’s just a lot of goods which isn’t very informative (other than now knowing I mostly have good days moodwise). Only figured out I could do that this morning though so it won’t be recorded below until next week’s blog post. I’m glad to get it done on time this week.

  • Overall mood – Good
  • Average daily sleep – 10 hours 51 minutes
  • Longest sleep – 24 hours 13 minutes from Tuesday evening to Wednesday evening (deep sleep not recorded due to user error)
  • Clothes changed – 1 (Johan’s penguin + hamster = porg t-shirt, and cat fleece top)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0, but did get head wiped during the wipe wash
  • Books read – 0 (I need to remind myself I want to finish this book)
  • TV watched – 0
  • YouTube videos watched – 0
  • Streams watched – 0
  • Music listened to – 0
  • Podcasts listened to – Welcome to Night Vale (Episodes 31-32), Hello Internet (part of episode 37)
  • Blog posts written – 1 (though worked on another)
  • Penguins cuddled –  Lots of cuddles 🐧🐧🐧
  • Johan hand holds – Plenty
  • Johan hugs – 0
  • Time on Twitter – 3 hours 33 minutes (average 30 minutes a day)
  • Time on Reddit – 21 hours 13 minutes (average 3 hours 1 minute a day)
  • Time on Facebook – 19 minutes (average 2 minutes a day)
  • Other –
    • Sleeping a lot makes it harder to do stuff. As does being too tired to do much.
    • Definitely think the weather has a big impact on how I feel. When it’s warmer outside I’m in less pain and often feel better overall. If I’m not asleep.
    • My hips are complaining a lot about how much sleep I’m getting. Although the alternating air mattress helps a bit, they still don’t like the pressure after a few hours, and the 90 minutes or so of lying on the other one isn’t a long enough break.

Game stuff

  • Games played – 6
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
    • Color Puzzle
  • AC: Pocket Camp Level – 103
  • Godville Heroine Level – 54 (38% done)
  • Godville wood for ark – 24.4%
  • Godville savings –  1 million, 9 thousand (yay!)
  • Cross stitch completed – 1
  • Most played game –  Animal Crossing Pocket Camp (12 hours 27 minutes, average 1 hour 46 minutes a day)
  • Other –
    • New Animal Crossing flower event – collecting Bumblecubes (cubed bees)
    • Seems a bit harder to get the rarer bees this time for the first half
    • My to visit list in Animal Crossing has reached 25 people. I know one of them outside the game.
    • Happy to get my first million savings in Godville. Only 29 million left to go 🙂