Category: M.E.

Still no rotas for my care calls. Most of the week has been spent anxious and panicky around the times of the calls. I’m not happy, but also not able to do much about it myself. Johan is planning on helping but he’s got other things as well (he did email the care agency but got no response).

Despite the anxiety about things I can’t do much about, I’ve mostly had a decent week. I have a new nephew who is very cute, managed to play lots of WoW (mostly in the middle of the night as that’s my best time at the moment), spoke to Sammie, and watched the new Doctor Who. Johan ran the Kielder Marathon on Sunday, and did extremely well, finishing in 3 hours 31 minutes 36 seconds and placed 44th out of 648. As it has gentle contours (read: some pretty big hills) he is really happy with this.

This cold is starting to get a bit annoying. I’ve discovered that I have septum perforation in my nose, which explains the whistling noise when I breathe. Not sure how long it’s been there but it can’t have been that long as the whistling has only been there about a week and I’d have noticed it. It probably doesn’t help that my nose is incredibly dry (as are my mouth and eyes) so it’s been difficult clearing it out (especially when I ran out of saline nasal spray). Another thing to add to the doctor discussion list but it’s definitely minor and maybe I could get some nose jewellery to put in it 😛 Hopefully at least the cold will go away soon.

• Overall mood – Mostly awesome and good, excluding around the care calls where I went between okay if I had an idea who was coming and awful when I didn’t. High symptoms all week, probably because of the cold.
• Average daily sleep – 8 hours 38 minutes (I wasn’t really sleeping well this week)
• Longest sleep – 14 hours 23 minutes, from Tuesday afternoon to Wednesday morning
• Clothes changed – 1
• Wipe wash – 1
• Water wash – 
• Hair wash – 0
• Books read – 0
• TV watched  – Doctor Who! Was excellent.
• Streams watched – 0
• Youtube watched – 0
• Music listened to – Daughter of the Sea on repeat
• Podcasts listened to – Episode 57 of Welcome to Night Vale
• Blog posts written – 2 (catching up)
• Penguins cuddled – Yup
• Johan hand holds – Sometimes
• Johan hugs – Too much pain and blehness
• Time on Twitter – 8 hours 26 minutes (average 1 hour 12 minutes a day)
• Time on Reddit – 21 hours 20 minutes (average 3 hours 2 minutes a day)
• Time on Facebook – 1 hour 46 minutes (average 15 minutes a day)
• Other –
  • Panic attacks are not fun.
  • New care worker on Sunday lunchtime came in yelling and woke me up. Ended up needing extra medication and feeling rubbish. Johan had to wake me up to watch Doctor Who (was worth it).
  • I’m so happy there’s a canonically disabled companion in Doctor Who! And that it’s dyspraxia! The new doctor is awesome as well. I want her rainbow top.
  • Worrying about a couple of people at the moment. Wish I could help them but being stuck in bed makes it hard.

Gaming Stuff

• Games played – 5
  • Animal Crossing: Pocket Camp
  • Cross Stitch
  • Neko Atsume
  • Godville
  • World of Warcraft
• AC: Pocket Camp Level – 128
• Godville Heroine Level – 50 (4% done)
• Godville wood for ark – 43.9%
• Godville savings – 1 million, 960 thousand
• Cross stitch completed – 0 (But worked on one)
• Most played game – World of Warcraft (19 hours 16 minutes, average 2 hours 45 minutes a day)
• Other –
  • Managed lots in WoW this week. Old raids I completed were Ulduar, Trail of the (Grand) Crusader, Ice Crown Citadel and Firelands. Ulduar and Firelands I did twice (before and after the Wednesday reset).
  • Got both Argussian Reach and Army of the Light reputations to exalted.
  • Completed the questlines to unlock the Dark Iron Dwarves, Lightforged Draenai and Void Elves. Not made any yet though.
  • Levelled my enchanting a bit more. It’s expensive so it’ll probably be the last profession to 150 Kul Tiran.
  • Animal Crossing was all about the bat flower event. I completed the hard mode on Saturday and have barely been in since.
  • Games are an awesome distraction from feeling rubbish.

Colds are ebil. They both make me very tired and also stop me sleeping as long as I need due to blocked nose and sinus pain. Ibuprofen has been a big help this week.

This week was rough, not just because of the cold but also because the care agency didn’t send me a rota so I didn’t know who was coming. As each of my main care workers arrived, they did tell me when they’d be here which helped a bit, but it still wasn’t great.

Monday I felt bleh but I watched YouTube videos and read some of my book on my Kindle (which I then dropped again). Johan got a new toy (DSLR camera) and took a terrible photo of me that he says makes me look really ill. I’m not sharing that one 😛 Tuesday I mostly slept.

On Wednesday I played World of Warcraft in the morning and then before sleeping I got out of bed! It was only for 5 minutes so Johan could change my sheet (as it’s less painful that way than trying to do it with me in the bed) but it still counts! That evening I woke up again in time for the nice care workers so they changed the rest of my bedding for me so I had nice clean bedding to enjoy. that was definitely worth the spoons.

As Johan was having most of the week off, we’d decided a couple of weeks ago that Thursday we would cancel all the care calls and spend the day together. The initial plan was to go out somewhere, but the cold put an end to that idea. We then planned to watch a film, but on the day we couldn’t decide on one to watch. So instead we watched a lot of the Edinburgh Zoo Penguin Cam, then put YouTube on to watch BBC 2 Idents and terrible infomercials. We also spent a lot of time just chatting, and not having to worry about when the care workers were going to come and how long until the next call made it a very good day. 

Friday, Saturday and Sunday are a bit of a blur, though I did play World of Warcraft when awake and with it enough, and also put lots of time into Animal Crossing on my tablet. I think I might slowly be starting to get over this cold as I’m not feeling quite as horrendous. I hope so as I’ve got plans and being asleep or out of it isn’t one of them 😛 Ideally I want to go out for Guy Fawkes’ Night in November to watch the fireworks, but we’ll see.

• Overall mood – Good and Awesome! High symptoms mostly because of the cold, but it seemed to be a bit better by the end of the week (less waking up unable to breathe at least).
• Average daily sleep – 10 hours 10 minutes
• Longest sleep – 17 hours 45 minutes, from Saturday evening to Sunday afternoon
• Clothes changed – 1 (Navy penguin top)
• Wipe wash – 1
• Water wash – 0
• Hair wash – 0
• Books read – 1 (more This is True book 1)
• TV watched  – 0
• Streams watched – Lots of Penguin Cam
• Youtube watched – Tons, mostly with Johan
• Music listened to – Just the music in my head this week
• Podcasts listened to – Episodes 55 and 56, and Bonus Episodes 1 and 2 of Welcome to Night Vale (while playing Animal Crossing as that was taking hours)
• Blog posts written – 0 (felt too rubbish, but caught up now)
• Penguins cuddled – Yes
• Johan hand holds – Not enough
• Johan hugs – 0
• Time on Twitter – 11 hours 8 minutes (average 1 hour 35 minutes a day)
• Time on Reddit – 24 hours 31 minutes (average 3 hours 30 minutes a day)
• Time on Facebook – 30 minutes (average 4 minutes a day)
• Other –
  • I apparently spent 6 hours 39 minutes on Reddit on Wednesday. I don’t think I was actively using it that entire time, but based on what I was doing around some of those times I think I just forgot to close the app before resting. 
  • I have been getting hallucinations of people breaking into the flat, while I have sleep paralysis. This is terrifying. I figured out it was a combination of the vibrations of the air mattress machine on the end of my bed, and people in the communal hallway talking/opening doors/moving around, and normal sleep paralysis stuff. At least now I know this I can try and reduce the vibrations and reassure myself that no-one is breaking in.
  • My left hip is still playing up. Might need to see the doctor about it but I don’t wanna. 
  • Johan is the best husband anyone could wish for. Except his complete disorganisation. That’s annoying 😛

Gaming Stuff

• Games played – 4
  • Animal Crossing: Pocket Camp
    
  • Neko Atsume
  • Godville
  • World of Warcraft
• AC: Pocket Camp Level – 127
• Godville Heroine Level – 59 (71% done)
• Godville wood for ark – 43.1%
• Godville savings – 1 million, 909 thousand
• Cross stitch completed – 0
• Most played game – World of Warcraft (17 hours 54 minutes, average 2 hours 33 minutes a day)
• Other –
  • Finished the fishing event in Animal Crossing, then 4 new animals came out. Just got them invited to my camp when a new flower event came out. Sometimes I wish it would slow down a bit.
  • New animals meant I got a lot of levels this week. There’s a robot frog!
  • New flower event is Halloween themed. This time we’re collecting different types of bats. I just finished the first part on Sunday evening. The second part comes out on Tuesday.
  • In World of Warcraft on Wednesday I defeated the last boss I needed for Perma-Pepe. Now I can have a bird on my head whenever I want!
  • I also found Pepe in Dalaran and Boralus. I’m skipping the one in Zandalar until I can get the guts up to go into a Horde city.
  • Did the Arathi quests and rares. Got a few toys and mounts, which was cool.
  • Got archaeology to level 950 and 7th Legion reputation to exalted. Working on fishing next.

Being on my computer makes me happy, even if I’ve not been well enough or awake at the right times to be able to get changed all week.

Most of the week has been the same as others recently – playing WoW on my computer when well enough, reading Twitter and Reddit when not, talking to Sammie when my awake/with it times line up with when she’s available. This is all good.

I did get payback from Sunday, but though unwelcome, it wasn’t unexpected so we were prepared. Needed antiemetic to deal with the cleaner being here (normally can cope with the cleaning products we get but payback made it worse than normal) and I did quite a bit of sleeping. 

Was having a good day on Thursday, when a different carer to who I had on the rota turned up before my 15 minute notification (so as I still had headphones in I didn’t realise she was there until she was almost in my bedroom) and though I told her I wasn’t coping, she refused to leave when I asked her to. Had a massive panic attack afterwards that left me completely drained. Johan sorted me out when he got home with meds and stuff and I went to sleep earlier than I would normally. We need to put in a complaint about not telling us about changes to the rota as I really need to know in advance (the carer was told a couple of days earlier so it wasn’t an emergency replacement).

Friday was mixed. Woke up because I did something to my left hip – it clunked audibly, sending a shooting pain down my leg and then I wasn’t able to move it for several hours afterwards. My right hip is meant to be the dodgy one. Made it fun when Johan needed to sort me out that morning, as usually I can roll over myself but it turns out I need to be able to move my leg to roll over properly. He hunted out my heating pad so I could use that on my hip and by the afternoon I could move it again and the pain was more bearable. No idea what I did but I’d rather not repeat it.

Saturday was pretty awesome. Was talking to Sammie while on my computer, and while talking about various things, I discovered the Ig Informal Lectures was going on at the time. We missed the first hour, but what we did see was funny and informative. My favourite was probably using voodoo dolls to restore justice against abusive bosses.

I stayed up all night (because what’s a sleeping pattern again) but had to wake Johan up earlyish Sunday morning because I’d got my left leg stuck and couldn’t move it. It made a massive clunk when he unstuck it, but though the unsticking was really painful the relief to get it out of that position quickly took over. I’m guessing this is related to what I did on Friday so I have to be careful not to get it stuck again. I slept most of the day, waking up for a few hours about half 10 that evening and spending some of that time chatting to Johan. I had planned on having a wash and changing my top with the evening carers but not being awake stopped that. Hopefully I’ll get it done soon.

• Overall mood – Mostly good and awesome, except Thursday which was bad. High symptoms most of the week cos payback and hip playing up, but Saturday was more normal.
• Average daily sleep – 10 hours 28 minutes
• Longest sleep – 19 hours 4 minutes, from Tuesday morning to Wednesday morning (Johan woke me up for painkillers)
• Clothes changed – 0 (Still a Ninja)
• Wipe wash – 0
• Water wash – 0
• Hair wash – 0
• Books read – 0
• TV watched  – 0
• Streams watched – Argick on Twitch speedrunning Sonic games (watched with Johan)
• Youtube watched – Jessica Kellgren-Fozard on the question Are You Better Yet? (Answer is always no, funnily enough). Also Mr Puzzle.
• Music listened to – Daughter of the Sea. So much.
• Podcasts listened to – Episode 52, 53 and 54 of Welcome to Night Vale
• Blog posts written – 0 (because I kept forgetting)
• Penguins cuddled – Indeed
• Johan hand holds – Yes, even when he wanted to leave 😛
• Johan hugs – Not yet, but lots of nose boops.
• Time on Twitter – 17 hours 15 minutes (average 2 hour 27 minutes a day)
• Time on Reddit – 15 hours 14 minutes (average 2 hours 10 minutes a day)
• Time on Facebook – 2 hours 18 minutes (average 19 minutes a day)
• Time on Mastodon – 2 hours 24 minutes (average 19 minutes a day)
• Other –
  • Remembered Mastodon was a thing. I’m @Dannilion@toot.cat
  •  First time I spent longer on Twitter than Reddit in a while. I blame @IAmMrJ and his awesome ratty posts 😛
  • Google said they’re retiring Inbox so I’ve swapped back to GMail. There are enough shared features I can manage, but I’ll probably be adding a ton of extra filters that I didn’t previously have.
  • Panic attacks are not fun, especially ones that last hours.
  • My heating pad helps so much when no-one is around to heat penguins.
  • Johan and Sammie are the best family anyone could ever ask for.

• Games played – 5
  • Animal Crossing: Pocket Camp
  • Cross Stitch
  • Neko Atsume
  • Godville
  • World of Warcraft
• AC: Pocket Camp Level – 124
• Godville Heroine Level – 59 (17% done)
• Godville wood for ark – 41.2%
• Godville savings – 1 million, 778 thousand
• Cross stitch completed – 1
• Most played game – Animal Crossing Pocket Camp (11 hours 7 minutes, average 1 hour 35 minutes a day)
• Other –
  • Got to revered with all the Battle for Azeroth reputations in WoW, which means I now have faster mount speed as I had met all the other requirements. This is good.
  • Tortollen are the best. They were the last rep I needed at revered.
  • 🐢 A 🐢 TURTLE 🐢 MADE 🐢 IT 🐢 TO 🐢 THE 🐢 WATER 🐢
  • Decided I’m gonna work on crafting every tailoring item I can for transmog purposes. This is going to take a while, especially as I’m wanting to start with Mooncloth Robes.
  • In Godville, Penguina got an achievement for 50 deaths.
  • Penguina also got a new pet heffalump. His name is Dino.
  • There’s now a Splatoon 2 crossover event in Animal Crossing. The main one I’m concentrating on is a collection quest for clams. Luckily this isn’t too stressful.
  • Still obsessed with WoW. I’m now dreaming about it.