Week 44

Danni is wearing a rubber penguin mask that covers their entire head.
I’m a Penguin
Danni is in their wheelchair, wearing purple waterproofs. They are in a park.
I went out to watch fireworks!
Another picture of Danni in their wheelchair in the park. This one is dark, other than a multicoloured rope light that is wound around their wheelchair.
Lights are awesome

Super late with this, but there’s a good reason. I went out! Have three photos instead to make up for it 😛

The beginning of the week was okay, other than a migraine. Didn’t do anything particularly interesting. Went on my computer on Wednesday and Thursday and played World of Warcraft (as well as catching up with the previous late blog posts).

Didn’t do much for Halloween other than wear my rubber penguin mask when the carers came in, which they somehow managed not to notice until after I took it off a few minutes later. Must have been one of those days for them.

On Friday Blizzcon started! Missed the opening ceremony as was asleep but watched some panels after waking up. The Diablo mobile game presentation was not good. I don’t think they’d realised how much they’d misjudged their audience. What they showed looked remarkably similar to a mobile game I’d played a few years ago, so while I might try it I’m not looking forward to it the way I would a new PC game. The non-Diablo panels I saw were good though.

Saturday was awesome! The local park had a fireworks display for Guy Fawkes Night (though a couple of days early so it was on a Saturday rather than a Monday) and I was well enough to go! The noise from the stage was so loud it was audible as soon as we left our building (about a mile away) but luckily it was the type of noise my noise cancelling headphones does well with. The fireworks themselves were awesome, and I’m really happy that I managed it (not so sure Johan was as he had to push me up and down steep hills and on grass :P). On the way home we picked up some pizza, and watched some more Blizzcon. It was an amazing day.

Sunday I slept most of the day, which was not a surprise. When I was awake I just listened to Welcome to Night Vale and played easy games on my tablet.

  • Overall mood – 3 good days, 4 awesome ones. High symptoms at the beginning of the week, but dropped to my normal by the end.
  • Average daily sleep – 10 hours 14 minutes
  • Longest sleep – 20 hours 7 minutes, from Thursday evening to Friday  evening
  • Clothes changed – 3 (including 13th Doctor top and Gender is a Universe hoodie)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 1 (shampoo cap)
  • Books read – 0
  • TV watched  – 0
  • Streams watched – Blizzcon!
  • Youtube watched – Yup
  • Music listened to – Battle for Azeroth soundtrack (while out on Saturday)
  • Podcasts listened to – Episodes 63 and 64 of Welcome to Night Vale
  • Blog posts written – 1
  • Penguins cuddled – Yup
  • Johan hand holds – Some
  • Johan hugs – Yes! On Saturday (is easier to hug in wheelchair)
  • Time on Twitter – 7 hours 38 minutes (average 1 hour 4 minutes a day)
  • Time on Reddit – 24 hours 3 minutes (average 3 hours 23 minutes a day)
  • Time on Facebook – 3 minutes 
  • Other –
    • That sleep from Thursday to Friday was epic. Without it, I doubt I’d have been able to go out. I did wake up every so often for painkillers and stuff, but fell asleep again quickly.
    • Fireworks are so pretty! Going out is awesome!
    • Noise cancelling headphones are amazing. I don’t know what I’d do without them at this point. Definitely not go out to watch fireworks.
    • The Gutenberg editor for WordPress was fixed quickly after the bug was reported. I’ve been using it fine for this post.
  • Games played – 8
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • World of Warcraft
    • June’s Journey
    • Pearl’s Peril
    • Pocket City
  • AC: Pocket Camp Level – 131
  • Godville Heroine Level – 61 (23% done)
  • Godville wood for ark – 48.3%
  • Godville savings – 2 million, 185 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing (11 hours 39 minutes, average 3 hours 3 minutes a day)
  • Other –
    • New events in Animal Crossing – an anniversary event that will have the other types of event with it.
    • Started with a flower event on Thursday. Finished the first half of it by Sunday.
    • When in World of Warcraft managed to get 2 new pets from Hallow’s End and made progress on the legendary staff.
    • Still enjoying June’s Journey and Pearl’s Peril.
    • Working on Halloween pictures in Cross Stitch.

Week 34 Review

Danni is in bed wearing a blue t-shirt with Diablo 3 on the front with rainbows and unicorns, a penguin neck cushion, and a maroon scarf on their head. They have a computer keyboard resting on their tummy and is smiling.
I remembered how to take a photo while on my computer!

Shortish post for this week as I made very few notes about it, I’m a week late, and my memory is bad. What I do remember is I spent most of my awake time playing World of Warcraft. 

In World of Warcraft, other than doing world quests and a bit of archeology, I mostly concentrated on the Jaina questline. This is one of the most emotional storylines I’ve ever played through, and I cried. As it’s long and there are major spoilers for an important Alliance questline below, I’ve put them in a couple of spoiler thingies (the first video is from the beginning of the main questline, the second is from near the end, the furthest part I got to this week).


Cinematic at the end of this part of Jaina’s questline.

Jaina’s guilt and feeling she is to blame for everything felt incredibly familiar to me, as that’s how I was when I had severe depression. Even before the events of the questline, it is obvious she has PTSD (as shown in the first cinematic). I had to pause several times while playing through the questline as it brought up some bad memories that I try to keep buried. It’s also why this blog post is nearly 2 weeks late – I need to process the emotions before I could blog about them.

Other than WoW, I mostly spent time on my tablet and slept. I also bought a new monitor, as after Johan swapped them over the oldest one was so heavy it was pulling the overbed table over. Got a cheap 1080p one to replace it and I can now move the overbed table without it tipping, which is good. Johan bought it from the local computer shop and also got a new keyboard there as the backlight on his was dying. Another week where so long as I didn’t move or be touched, I was mostly okay (other than digestive system playing up).

  • Overall mood – Mostly awesome, a couple of good. High symptoms some days due to digestive ebils.
  • Average daily sleep – 9 hours 28 minutes
  • Longest sleep – 15 hours 3 minutes, from Thursday morning to evening.
  • Clothes changed – 1
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched  – 0
  • Streams watched – 0
  • Youtube videos watched – Jessica Out of the Closet, Tom Scott, vlogbrothers
  • Music listened to – Battle for Azeroth soundtrack
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled – Yup
  • Johan hand holds – Yes
  • Johan hugs – Yup! I needed one after that storyline.
  • Time on Twitter – 6 hours 33 minutes (average 56 minutes a day)
  • Time on Reddit – 20 hours 6 minutes (average 2 hour 52 minutes a day)
  • Time on Facebook – 1 hour 56 minutes (average 16 minutes a day)
  • Other –
    • I really need to either do these on time or actually write things in my diary, as I can’t exactly rely on my memory 😛 
    • The weekend wasn’t quite as good as that’s when my digestive system played up. I hate taking cyclizine but I hate vomiting more.
    • Being on my computer more meant more video chats with Sammie, which is awesome.
    • Johan makes me watch the Jessica videos with him now, as he loves them as much as I do. She’s awesome, and with Claudia they make an adorable couple <3
  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • World of Warcraft
  • AC: Pocket Camp Level – 120
  • Godville Heroine Level – 58 (36% done)
  • Godville wood for ark – 38.0%
  • Godville savings – 1 million, 612 thousand
  • Cross stitch completed – 0
  • Most played game – World of Warcraft (25 hours 28 minutes, average 3 hours 38 minutes a day)
  • Other –
    • World of Warcraft is definitely my obsession at the moment. It’ll calm down at some point but I’m really enjoying it right now.
    • I just want to give Jaina a hug 🙁
    • Continued with the Google flower event and the geodoites in Animal Crossing.
    • Mostly logged into other games just for daily bonus, because WoW.

Week 33 Review

A metal ornament, which is round and has a lion's face and mane on it, representing the Alliance in World of Warcraft.
For the Alliance!

We’ll ignore that the photo was taken a week late and is rubbish 😛

Monday the 13th was our 8th wedding anniversary. As is normal, I spent most of it sleeping, but before I slept I ordered McDonalds breakfast for us both and we had hugs (which are awesome but very painful).

The launch of the World of Warcraft: Battle For Azeroth expansion was at 11pm UK time, so once I woke up I went into WoW with Johan in preparation, as I had decided to buy digital version of the expansion so I could play at launch. It ended up activating a few minutes early, and it was a mostly smooth experience for us. I managed to get to level 114 and finish the main storyline in Drustvar before having to give in and get more sleep, mostly fueled by caffeine and crisps. Since we both like WoW, it was a pretty decent anniversary 🙂

Tuesday my Collector’s Edition of the expansion arrived, and I looked at the pictures in the novella book and Johan complained about my Alliance metal ornament thingie having the Horde logo on the back, before he put it under the telly on my Tivo box. I tried taking a photo but as it’s far away, dark and my hands are very shaky it is a bit rubbish.

Most of the week consisted of playing WoW, recovering from playing WoW, and sleeping. On Thursday I had an appointment with the CFS team person, where I was told that important people are saying they have to stop home visits. They’re trying to keep them but if they don’t succeed that was my last appointment. It sucks because I found them really helpful and I think I’d be doing worse without their input. If I had more spoons I’d yell at the important people but I don’t.

Playing WoW has brought up a new issue I have – turning my head for more than a couple of minutes causes pain to shoot up my neck and head on the opposite side. I was getting it while turning my head to see my second monitor, and while the CFS team person was here (which confirmed it’s a problem on both sides). It’s really annoying as being in bed it’s hard to keep looking straight forward all the time. Johan did swap my monitors over so my main one is now in front of me which helped a bit, but it’s still annoying. I’m gonna have to see the doctor about it as it’s new and causing me problems. Hopefully it’s something that can be fixed.

I feel really lucky to be well enough to play so much WoW. Johan is super busy with volunteering and running, and my best times tend to be in the evenings or the middle of the night, so I’m restricted in what I’m able to do when well enough. I really missed it when I couldn’t manage it, and hopefully I’ll be able to continue playing for a long time.

  • Overall mood – Awesome all week. Mostly normal symptoms, and playing WoW really helps distract from the blehness. 
  • Average daily sleep – 9 hours 50 minutes
  • Longest sleep – 19 hours 45 minutes, from Saturday morning to Sunday morning.
  • Clothes changed – 2
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0
  • TV watched  – 0
  • Streams watched – Penguin cam
  • Music listened to – World of Warcraft: Battle for Azeroth soundtrack
  • Podcasts listened to – Episodes 44 and 45 of Welcome to Night Vale
  • Blog posts written – 1
  • Penguins cuddled – Lots
  • Johan hand holds – Daily
  • Johan hugs – Yes!
  • Time on Twitter – 4 hours 27 minutes (average 38 minutes a day)
  • Time on Reddit – 11 hours 6 minutes (average 1 hour 35 minutes a day)
  • Time on Facebook – 1 hour 10 minutes (average 9 minutes a day)
  • Other –
    • Desktop computer tracking is working, though I need to work on making my categories easier to use.
    • Caffeine seems to have an overall positive effect on me, making me more alert and less dizzy. I was expecting to crash afterwards but other than needing a long sleep, I’m mostly Danni-normal.
    • Took a couple of days to do a food shop as My Supermarket couldn’t log into my Morrisons account for some reason, so had to manually do the order again. That was not fun.

Game Stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • World of Warcraft
  • AC: Pocket Camp Level – 118
  • Godville Heroine Level – 58 (11% done)
  • Godville wood for ark – 37.2%
  • Godville savings – 1 million, 585 thousand
  • Cross stitch completed – 1
  • Most played game – World of Warcraft (34 hours 17 minutes, average 4 hours 53 minutes a day)
  • Other –
    • I love the new WoW expansion. The storylines are great and there’s so much choice in what to do.
    • Johan also loves it. I paid for his expansion and a month’s subscription so we can play together (or at least talk about it together, as we both play healer priests and have different playstyles)
    • Reached level 120 on Friday. Was awesome!
    • Finished the fishing event in Animal Crossing, so they released another flower event. Starting to be a bit overwhelming.
    • Did I mention I like WoW? 😛

Penguins are Best Birbs

I’m currently watching the Edinburgh Zoo Penguin Cam and there’s a baby Gentoo chick that’s been born. It’s so adorable, though we don’t get to see it much as the parents keep it hidden under their bellies. I also watched Penguin A+E last night and that was amazing. I love that they were taking such good care of the African penguins and they made the one that was starving big and fat again 😀

I think I’m not doing too bad at the moment. I’ve been in my chair more, going to Nando’s one night and last Thursday going out to vote then to the local shop. I’m going into the living room more frequently, and it’s almost tidy enough so I’ll be able to lie on the mattress in there (the daybed still needs to be built). I love being in the same room as Johan, so we can talk while doing our own things (him on his computer, me on my tablet). I think the weather calming down (and being nicer) has helped, as when it changes all my symptoms get worse, so when it was being really erratic I was in a lot of pain and very grumpy. I hope the nice weather stays for a bit, as I’m enjoying not being too bad for me.

Sleep has been all over the place. Sometimes getting very little, sometimes like yesterday sleeping for nearly 16 hours. This means I’m not able to plan anything, as I don’t know if I’ll be awake. That nearly 16 hour period of sleeping I did manage about 11 hours of actual sleep, which is a big improvement over the 5-6 hours I normally manage most times. I think I needed it.

My nausea levels have been a bit more bearable, which means I’ve been taking less cyclizine. I hate taking cyclizine as it makes me dopey and out of it, but I hate vomiting more, so as my nausea had been so bad the last few months I was taking it regularly. A downside we’ve found to not taking it is my appetite is back down to very little, so I’m not feeling hungry as much and when I do it doesn’t take long until I’m full. I definitely think it’s the reason I’m no longer underweight (one of the side effects for me is increased appetite, beyond that of just being less nauseous) so we’ll have to keep an eye on things. I’m not taking it unless I need it for nausea as I like knowing what’s going on and the brain fog is bad enough without it, but if it becomes an issue I’ll speak to my GP about it.

I’ve been working on my loom band stuff again recently, though many of them haven’t worked (I was making a bag and it fell apart as I was trying to repair a mistake). I have managed a purple penguin headband though, which I’m happy with. I’m hoping to look into loom knitting when I get some yarn as it’s very similar, but when looking for yarn I got completely overwhelmed so haven’t managed to get any yet. All I know is that chunky yarn is best for loom knitting a scarf, which is the first thing I want to try and make. I have got the attachments needed to make some loom band lanyards, so I’ll be trying that next I think. First though I need to sort out one of my boxes, as Johan managed to knock it over and mix all the bands up. The good thing is I really enjoy sorting so it’s been quite nice working on getting them organised. Still got some way to go, but I think they may be more sorted than they were originally once I’m done (one of the sections was glitter jelly bands and another neon bands, all in different colours, so I’ll be separating the colours out). I’m also partially through making a wallet, which will be awesome if I manage to finish it without it breaking before I’m done.

Last night I also watched the Eurovision Song Contest first semi final. I missed the first song as that’s when I was waking up, but Johan said I didn’t miss much. I liked all the sparklies, shinies and purple suits (so many awesome purple suits!) and Russia’s special effects in particular were amazing. I can’t remember what songs I liked, but I think at least one of them got through to the final (I really should have made notes). If I’m awake I’m wanting to watch the next semi final and then the final on Saturday, but just in case I’ve set them to record as I do like everything about it. I’ve been following someone on Twitter (@Scattermoon) who has been tweeting their journey to Stockholm to see Eurovision and it was amazing- I could imagine I was travelling with them. One day I’d love to travel across Europe by coach and train like they did 😀

It is ME awareness month/week/day this month (I think we’re currently in the week, and the day is tomorrow? I’m not sure). I’m not sure I’m up to posting anything in particular for it, but if I see anything particularly good then I’ll try and share it. ME is a horrible illness and some doctor’s still don’t believe it exists, or think it’s a form of somatoform disorder, when there’s now plenty of evidence that’s it’s a physical disease. There’s definitely a psychological component, especially since adrenaline can make symptoms worse, but that’s the case with most chronic illnesses. I’m lucky that mine seems to have stabilised now, but some people continue to get worse and can’t do the things I can.

The care agency seems to be improving a bit. The care worker who yelled at me and the manager(?) who came into my bedroom without permission or even telling me both no longer work for the agency. I’ve been told that only one manager (who knows me as she’s done my care calls before) is allowed to come to our flat for agency stuff, and she knows to phone Johan before coming. We also have an agreement I’m not going to have spot checks and that the key safe is only to be used for actual care calls. I have two main care workers now who do all my weekday calls and my Saturday morning call, but the other three (Saturday evening, Sunday morning and Sunday evening) are still random and I still don’t have  rota to tell me who it’s going to be. Last Saturday evening one of my normal care workers did the evening call, and though she had to come early for it that was okay as I knew in advance and I preferred that to having someone I don’t know very well. The care worker on Sunday morning is a mystery, as I was asleep and they didn’t write in the book (and also arrived at 9.15am for a 10am call) but the evening care worker was someone I’d had once before who I get on with well and just seems to get things without needing everything explaining in detail. It was also the first evening call in months that was actually at the right time (5.30pm instead of 5pm). That makes such a difference as it means I use a lot less energy trying to explain things and dealing with everything. I think things with the care agency calming down is partially why I’m able to get into my chair and go out more. All I need now is a rota, the evening calls to happen at the right time and for them to contact us about changes and I might be able to stop worrying about it.

I managed to play a bit of the Overwatch beta last week, playing as Mercy (a healer). I’m not very good, but it’s the first FPS I’ve actually enjoyed playing, which is awesome. If I continue to get on the computer regularly then I think I’ll be playing it quite a bit. Johan didn’t enjoy it quite as much, so probably won’t be buying it (I’ve already preordered it as I knew from the initial announcement I’d probably like it, and watching people play it confirmed that for me) but that’s okay as I’m sure I’ll be able to find people to play with. At the moment I’m only playing against the AI but at some point I’ll be brave enough to play against real people.

This morning I played a bit of World of Warcraft, working on the legendary ring for Danni. I’d got to the part where you need to get documents and eavesdrop on the Horde with Garona, which is known as probably the hardest part of the whole quest chain. I’d already tried (and failed) to complete it for over an hour previously, but this morning I managed it in about 20 minutes, though I ended up cheating and using my flying mount to bypass everyone. After I’d managed that I did all of Hellfire Citadel in LFR, getting 9 tomes this week. Since I need 33, that’s not too bad and if I can get on the computer every week, I should be able to complete the ring before Legion comes out in August. I’m looking forward to the film coming out, and I want to go and see it in the cinema but that might be a little bit optimistic (though I’d take earplugs and things to make it less overwhelming). If I can’t I guess I’ll have to wait until it’s available to download and then I’ll watch it. I’ve got the prequel book to read so I’m hoping to finish that before the film comes out.

I’m happy I’m able to do more. I’m not massively improved physically, but those small amounts of improvements where I’m less nauseous, more able to be semi-upright and able to tolerate a bit more light and sound make a massive difference in how much I’m able to do. I still have to be careful, as last week I made myself really ill by wiping my own leg with a baby wipe (I was doing okay, then I wiped myself and ended up really nauseous, dizzy and shaking). I’m not sure why such a small thing triggered such a large reaction as I normally get a bit more warning than that, but it was a reminder that I do need to be careful if I want to keep doing the stuff I enjoy. Hopefully I’ll keep managing a little bit more as time goes on so I’ll be able to do some of the bigger things, like go to the cinema or travelling to Leeds. Until then, I’ll follow other people’s journeys and imagine taking them myself 🙂

How Did It Get to April?

The problem with sleeping a lot and randomly is that time somehow disappears so one day it’s February and then suddenly it’s the middle of April.

I’ve been very up and down the last few weeks. Still got issues with the care agency. ESA form is in so I’m waiting to hear if I’m still in the support group, and if so for how long. Some time spent on my computer but nowhere near as much as I’d like, and not at all for about two weeks until this week. I’ve not been in my chair much either, though did go into the living room for a bit and outside for 5 minutes to try and spot the International Space Station (and failed due to clouds) at the beginning of the month. I’m hoping to be able to go properly out again soon. Esther has moved out, as our flat was just too small for the three of us, especially with my health being affected by everything (she was a great flatmate, and her new place is better for work so I’m hoping it goes well for her).

Easter was good. Eggs and bunnies were bought and eaten. I managed to watch the church service on the telly which was awesome as I miss going to church. I’ve looked into inclusive church services that happen at a time that I can actually get to them (there’s no chance of me getting anywhere for 10am, especially on a Sunday) and I’ve found one that looks really promising, so when I have the spoons I’m hoping to email them about the stuff I need to know (how accessible is it, whether there’s a set routine or service I can learn and follow, how noisy it gets). Emails are hard even when I know what I want to say.

April is also autism awareness/acceptance month. I’ve done pretty much nothing for it, other than speak to my GP for help with my anxiety and ways of coping before I end up in meltdown (unfortunately happening all too regularly due to care agency stuff, like being yelled at by a care worker, or someone I don’t know letting themselves into our flat and into my bedroom with no notice, name or ID- the first I knew of it was when I rolled over and she was there, as I had earplugs in). I think this was the first time I’d told a doctor about my meltdowns, as when they happened once a year it wasn’t that important for them to know. It’s also in my care plan now, along with what to do (leave me alone and if Johan is in, get him- it might be scary seeing me hit or bite myself but I’m not likely to hurt myself too badly and the worst thing you can do is talk to me or try and touch me). Unfortunately most of my coping/prevention methods involve things I can’t do due to being so ill with ME, so I’m not sure what to do, especially when our ways of trying to prevent them (like telling the care agency not to use the key safe except for care calls, and to contact us in advance before turning up) are being ignored.

My GP was awesome as always. She seemed to understand that a meltdown is different from a panic attack (though I still get plenty of them, normally at night when the neighbours are arguing). She’s not got many ideas yet, but she’s going to see if there’s someone who understands autism who may be able to help me come up with some coping strategies. I don’t get why I’m so nervous about seeing her when she’s always so nice and tries to help, even though I’m not the easiest person in the world to deal with (yay neurological illness with no currently known effective treatment and communication difficulties due to autism!). She even sorted out an antihistamine prescription for Johan even though it was my appointment.

I’m still getting used to the side effects of cetirizine I’m taking for hay fever (even though there are no leaves on my tree yet there’s definitely pollen around). Mostly extra drowsiness and dopiness, though it might also be why I’m getting worse headaches than normal. Luckily it’s nothing that I can’t cope with and it’s worth it so my eyes aren’t as sore and itchy.

I got selected from the waitlist to buy Here Active Listening ear buds. They work well for what I want them for (turn down certain noises while still being able to hear what I want, such as turning down background noise while still being able to hear speech) but only when I can actually get them working with my tablet. Unfortunately the left one doesn’t seem to like turning on every time and I’ve had difficulties getting it to connect to my bluetooth, but I’m hoping that it’s just teething issues and they’ll work better soon.

I’ve also recently updated my tablet to Android Marshmallow from Lollipop. While doing so I took the time to encrypt it, so it’s now more secure (though I’ve also turned on smart lock so when I’m at home with it then it’ll automatically stay unlocked, as typing in the password every time would be too much for me). The only bug I’ve found is that the IR Blaster doesn’t seem to be working, which means I can no longer control my telly from my tablet. When I’m not able to press the buttons on the remote myself I’m needing Johan to do it for me. Hopefully that’ll be fixed soon, or I’ll have to look into a touchscreen remote control.

I’m getting excited for Overwatch coming out next month. I’m hoping I’ll be able to get on my computer to play it, as I preordered it. I’m probably going to be terrible but it looks fun anyhow. Today I managed to get my Diablo Wizard to level 70, which only took a couple of years. Hopefully I won’t take as long with my next character 😛

I’ve been enjoying watching the Penguin Cam at Edinburgh Zoo, which shows the gentoo penguins and their stone nests. Watching the penguins mate has been interesting, especially as they keep being interrupted by other penguins wanting to steal their stones while they’re doing so. There are quite a few eggs now and hopefully in the next month or so there will be some chicks. Until then there’s lots of stone stealing from nests, and occasionally the king penguins invade, especially at feeding time.