Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

2018 Week 1 Review

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

A virtual cross stitch pattern, mostly pink and purple with large white numbers saying 2018.

Danni is lying in bed, wearing a purple t-shirt with a picture of the top half of an orange cat's face (Bilbo), with orange boy fan club written underneath in white. I’m wanting to blog every week, as I use my blog as a reminder of what I’ve been up to. This week I’ve started using a couple of new apps to track what I’m doing, and I’ve decided to use the data from there to make a blog post. I’ll probably tweak this template as time goes on and I decide what information I want to include or not. If I feel up to it I’ll add appropriate links, but on bad days I’ll leave them out.

The apps I’m using for this are Smarter Time (tracks what apps I’m using on my tablet and for how long), and Daylio (daily journal app which lets you record your mood and activities by just pressing a button). I’m also using my FitBit for sleep data. I only started using Smarter Time on the 3rd January, but from next week I’ll be using it to track how long I spent trying to sleep, as it’ll be more accurate than my FitBit for that.

I’ll also be adding my photo of the week. This week it’s one Johan took of me.

  • Overall mood – Good 😊
  • Average daily sleep – 7 hours 56 minutes (of ~11 hours trying)
    Clothes changed – 1 (Orange boy fan club t-shirt)
  • Wipe wash – 1
  • Water wash – 0
  • Books read – 1 – Slightly Higher Interval Training for 5K runners (or Run 5k in under 20 minutes on Goodreads for some reason)
  • TV watched – New Year Fireworks in London
  • YouTube videos watched – 3
  • Music listened to – Enya, Paramore, “relaxing” instrumental playlist (I disagree with Google on what counts as relaxing – it included the Game of Thrones theme)
  • Blog posts written (including this) – 4
  • Penguins cuddled – lots 🐧🐧🐧
  • Johan hand holds – lots, but wanted more
  • Johan hugs – 0 (I can’t wait to be well enough again)
    Time on Twitter (since 3rd January) – 5 hours 1 minute
  • Time on Reddit (since 3rd January) – 5 hours 33 minutes
  • Time on Facebook (since 3rd January) – 1 hour 14 minutes
  • Other –
    • Cleared snack box of rubbish
    • Automated app backups
    • Ate chocolate igloo Johan smashed (called the DWP)
    • Maybe I’m finally getting over this cold?
    • Read short Fusbyverse story on Reddit.

Game stuff

Danni

Goals for 2018

Danni, Goals, M.E., Physical Disability, Real Life

Last year I decided to make some goals for the year. It’s time to make some new ones, but first to see how I did with the ones from last year.

  • Have a shower at least once every 2 months – This didn’t happen. I think I managed one shower all year. A mixture of reasons, but mostly not being well enough.
  • Use the toilet/commode – Still not managed this. I’m hopeful for this year though.
  • Go out with Sammie somewhere – Partial win. I went to see her school play, though she didn’t know I was there until after. Worth it though.
  • Create and keep to a rough daily routine – One I managed! I have it set up in Habitica. Most days I manage everything on it, and it has helped my anxiety quite a lot. I might blog about it sometime.
  • Read at least 20 books – I was doing well with this until I went into the care home, then I took 5 months to read 1 book. I think I ended on 15 (Goodreads counted one of them twice for some reason). Could be worse.
  • Sort out my clothes – This hasn’t happened yet, but I’ve bought some vacuum bags and a pump and the cleaner comes 2 hours a week now, so hopefully it’ll get done this year.
  • Sort out our letters – Complete fail. I have folders, just need to be well enough to do it, which hasn’t happened yet.
  • Spend more time in the living room – I think I managed this, though it’s hard to tell as it’s been a few months. New day bed is awesome though.
  • Sort out computer stuff – Partial win. I haven’t sorted out the blog much, but I’ve made progress on organising important files and my photos.
  • Go out with Johan somewhere that isn’t shopping or for a meal – Win! We saw Sammie’s school play together.
  • Create a guide to looking after me – Almost done. Only thing I need to add is where things are kept, and since I can’t do that bit without help I’m thinking of just printing what I have and finishing it when I can. It’s already been useful.

Of the 11 goals I had, I completed 3, partially completed 3 more, and failed 5. Could be worse.

New goals for this year:

  • Shower at least twice – as every two months was too optimistic, I’ll reduce it to double last year. Any extras will be a bonus.
  • Use the toilet or commode – I’ll keep adding this until it happens 😛
  • Go somewhere with Johan that isn’t shopping or a meal – I like this one so am repeating it. Hopefully I’ll manage something more pleasant than my PIP tribunal, but just in case I’m not well enough for something else I won’t exclude it.
  • Read at least 20 books – I’m just about able to read again now, so I’m hoping to manage it this time. Hopefully there won’t be a repeat of the care home situation that really broke my brain for months.
  • Spend quality time with Sammie in person – she’s my favourite person, so even if I’m stuck in bed I want to spend time with her. Hopefully it’ll be somewhere out though.
  • Watch a film – I didn’t manage any films in 2017, so I’m hoping to fix that this year.
  • Sort out my blog – I’m wanting to update my blog roll, work on categories and tags, and maybe even change the theme. Luckily I can do this from bed.
  • Track my daily activities – I’ve found a couple of apps to help me with this, and I’ve managed so far this year. This is mostly so I can see when I’m doing things like having a wash or getting out of bed so I can prioritise what I need to do when I’ve got the energy for it.
  • Blog every week – ambitious, but I’m creating a template that means if I’m really ill I just need to answer the questions, and I can use my daily tracker for the answers. I use my blog to remember when things happened and that’ll be much easier if I’m posting regularly.
  • Take a selfie or have a photo taken every week – I am trying to feel better about myself and how I look, and hopefully this will help. I can use it for my weekly blog post, too.
  • Try not to feel guilty when avoiding bad news I can’t change – there’s a lot of bad news at the moment, and some of it makes me very anxious. When there’s something I can do about it, I want to do so, but it helps no one if I’m worrying about things I can’t influence. I’ve gotten better at not reading the news when I’m not able to cope with it, but I need to work on feeling guilty about it.

I think that works. I’m still going to try and organise my clothes, the letters and other stuff, but as I need a lot of help from other people I’ll count them as bonuses if I manage them.

Danni

2017 in Review

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

Every year since I started this blog, I’ve done an end of year survey. I’m going to keep almost the same questions as last year, but if there are any I can’t answer two years in a row then I’ll change them next time.

1. What did you do in 2017 that you’d never done before?
Went to Sammie’s school play. It was the first school event of hers I made it to, so a very big deal.

I also joined Running Ninjas, which is a running club. It turns out you don’t actually need to be able to run (or even get out of bed) to be a member. It’s the group Johan is part of and I love seeing how everyone is doing.

2. Did you keep your New Year’s Goals, and will you make more for next year?
I managed some of them, but not all. Going to have a separate post with specifics.

3. Did anyone close to you give birth?
Yes. Laura’s baba is gorgeous!

4. Did anyone close to you die?
As last year, no-one I was very close to, but some people I knew, and others I admired but was too ill to contact. And our upstairs neighbour, who was physically close.

5. Where did you visit?
South Tyneside Hospital for getting teeth sorted. Gateshead and Newcastle. Sammie’s middle school for her school play. Care home. I also went and watched the Great North Run on the Felling Bypass.

6. What would you like to have in 2018 that you lacked in 2017?
Better health. More showers please.

7. What will you most remember from 2017 and why?
Getting new, much nicer neighbours. The old neighbour being murdered. Seeing Sammie’s school play. Going to the Great North Run and seeing Mo Farah, Aly Dixon and Johan running really really fast!

8. What was your biggest achievement of the year?
Going to Sammie’s school to see her play. It was the furthest I’d travelled in at least 6 years, possibly more.

9. What was your biggest failure?
Probably not having a single bath while in the care home. That’s because I was using all my energy on bedding changes as they weren’t checking on me enough. Also only getting standard daily living PIP with no mobility because I can walk and don’t need care apparently (tribunal is in February). Having to give up loom knitting as my hands wouldn’t cooperate.

10. Did you suffer any new illness or injury?
I caught a cold while recovering from going out to see the Great North Run. Then another, and then another. So I’m doing worse both physically and cognitively than in 2016. It sucks.

11. What was the best thing someone gave you?
Penguin fairy lights from Jen. Little abstract paintings from Mathsie. Penguin pillow/handwarmer from Sammie. Purple sparkly crystal thing from Johan. Crochet penguin from Tony and his wife. And I’d had more. I’ve been completely spoilt this year.

12. Who impressed you this year?
Johan with the progress he made with his running, including two full marathons and lots of half marathons. Sammie with how much she cares about her friends and for seeking help when the situation was too big to handle alone. Everyone who survived despite how terrible a year it was.

13. What made you appalled and/or depressed?
I might not have liked my old upstairs neighbour, but he didn’t deserve being murdered the way he was. Politics in general. The DWP both in general and for the PIP decision they made (they acknowledged I can’t sit up or stand, but say I can walk. And I don’t need carers, just aids and adaptations. They still haven’t explained how that works with me being almost completely bedbound). TERFs. Bigots.

14. Other than food, bills and disability stuff, where did most of your money go?
Technically disability stuff, but I bought a new tablet which is awesome. Also Philips Hue lights and a Google Home Mini, so I can do funky stuff with my lights and control them via my tablet or voice. Sammie’s computer took most of my savings, so need to build them up again 😛 Was worth it for how much she’s enjoying it.

15. What did you get really, really, really excited about?
Sammie’s school play! Great North Run! Friends doing awesome things! Johan getting better at running and getting medals! Penguins! Cats, especially Bilbo, Tilly and Erica! Ratties! Bunnies! Animals in general! Space!

16. What big events will you remember most from 2017?
Trump. The lack of of plans for Brexit.

17. Compared to this time last year, are you:
a) happier or sadder?
About the same.
b) healthier or more ill?
More ill. A cold really knocks me around – three in a row and some days it’s an achievement just to wake up.
c) richer or poorer?
Poorer. Standard daily living PIP is much less than higher/higher DLA. Johan now gets more PIP than me. If it weren’t for that, we’d probably be struggling much more.

18. What do you wish you’d done more of?
Getting out of bed. Showers, bed baths and hair washes, as been too ill most of the time, especially since September. Communicating with friends.

19. What do you wish you’d done less of?
Being anxious. Panicking. Hallucinating (I suspect due to not sleeping well). Feeling ill.

20. How did you spend Christmas?
Opened presents, slept, had Christmas Dinner Johan made in the afternoon (roast duck, and his roast potatoes were even better this year). Watched the Doctor Who Christmas special with Johan. Video chatted with Sammie. It was a good day.

This year our tree had lights (it’s a fibre optic tree as our old one broke), decorations and a penguin on the top! Then 10 minutes later the penguin fell off. Need to think of penguin securing methods for next year.

21. What did you love in 2017?
Other than Johan, Sammie, and family, seeing friends and people I like achieving their goals. Also cute animals, including penguins 🐧

22. How many trips out?
A few in the first half of the year. After coming back from the care home at the beginning of August I only just recovered enough to watch the Great North Run, and then I caught colds so I’ve been completely bedbound since then.

23. What was your favourite TV programme?
Steven Universe. I managed to catch up with season 3. I’m looking forward to watching season 4 as soon as I’m well enough.

24. Do you dislike anyone or anything now that you didn’t dislike this time last year?
Most people who are awful now were already awful. My PIP assessor and decision maker though I dislike for their blatantly wrong decision.

25. What was the best book you read?
Hard one. I liked The Girl who Circumnavigated Fairyland in a Ship of her Own Making, and Feeder. I can’t remember enough of any of the books I read to decide on a favourite.

26. What was your greatest media discovery?
I didn’t watch any films this year, see any new TV shows, or listen to any new music. Do video games count? I liked watching Johan play Vostok Inc., but as he’s the QA guy he knows the game very very well. When I can hold a controller I’m wanting to play myself.

27. What did you want and get?
I got to see Sammie’s school play, which was amazing. I also got to see the Great North Run, which I’d been wanting to go to since I moved here (the route goes past about 15 minutes away).

28. What did you want and not get?
Baths in the care home. More showers. Despite many hints, no flowers from Johan 😛 I also had to give up my World of Warcraft subscription as I was too ill to play.

29. What was your favourite film of this year?
I’ve not seen any films this year, as have been too ill. I’m hoping to change that next year.

30. What did you do on your birthday?
Spoke to Sammie on video chat! Got awesome presents! Played with a light up balloon! Had cake a few days later.

31. What one thing would have made your year immeasurably more satisfying?
Not relapsing. It sucks.

32. How would you describe your personal fashion concept in 2017?
Comfy, purple, penguin and cut up fleecy pyjama tops. Being able to put my fleece on and off by myself makes me happy, even if it does look weird and untidy.

33. What kept you sane?
The usual (Johan, Sammie, friends, penguins). Twitter. Pictures and videos of cute animals. Chocolate.

34. Which celebrity/public figure did you fancy the most?
I can’t think of anyone. I do fancy a few people, but they’re not public figures.

35. What political issue stirred you the most?
Brexit and Trump. It seems every time I look it’s gotten worse.

36. Who do you miss?
Other than Sammie, Johan and my friends when I can’t talk to them, I’ve really missed Ron this year, especially when I’ve been feeling worse.

37. Who was the best new person you met?
Online, probably Ellen (and Bilbo), though it’s very one sided (I follow them, but I have had a note when buying things). The only notable person I can think of who I met offline was Sammie’s favourite teacher at middle school. Some of the care workers from the new care agency are also awesome.

38. What was the best thing you ate?
Johan’s potatoes were even better this year. So them.

39. Tell us a valuable life lesson you learned in 2017?
Do things you want when you can, as there’s no guarantee you’ll be able to do them in the future. Also, Tories are evil.

40. A quote that sums up your year:
“Braaaaains.” – me in zombie brain fog mode. Which is most of the time.

Danni

Happy New Year!

Autism, Computers, Gaming, M.E., Penguins!, Physical Disability, Real Life

I hope everyone had a good Christmas/holiday period, and that this year is better than the last.

I’m still not doing amazingly. Caught another cold before I’d recovered from the last one, so haven’t got out of bed since the Great North Run in September. Despite this, I had a lovely Christmas, and was thoroughly spoilt.

Johan bought me this amazing purple glittery crystal thing, that is sparkly. I’m hoping to find somewhere to put it that has a light shining on it so I can see it properly. He also got me some sheets which is very practical when bed bound 😛

Sammie came over on Christmas Eve, which was the best present from her, especially the hug. She also brought me gifts, a wall sticker of some penguins swimming through a port hole, and this huge penguin cushion that’s also a hand warmer. She got Johan (now also called Dad2) a t-shirt saying “I am currently unsupervised. I know, it scares me too, but the possibilities are endless!”. Both of us were extremely happy. Sammie’s grandparents gave me a chocolate penguin and chocolate smashable igloo, and Johan some running socks. That was awesome of them 😊

My mum gave us a pod coffee machine. As Johan has now started drinking coffee, this is very much appreciated. If also does hot chocolate so I’ll be able to use it too. Other gifts included a hot chocolate mix and some star decorations from friends (and I think there were others I can’t recall right now). I’m grateful for all of them, and along with the many cards I received feel very loved.

Christmas day I spent time video chatting Sammie, which is always good. Johan made Christmas dinner, which was roast duck, his amazing roast potatoes (even better this year!) and the trimmings. I managed to stay awake to eat it, and also watched the Doctor Who Christmas special with Johan. Loved the episode, and it makes me want to catch up with the last series (I’d only got up to the 2016 Christmas special before). I may not have been able to get out of bed, but it was awesome.

Boxing day the payback from the last few days hit, so I spent most of the day asleep or resting. I did manage to message Sammie to wish her a happy birthday (she’s 14 now, which is kinda scary) and I think she liked the presents we got her. That’s pretty much how I spent the rest of the week, though on the Saturday Johan went to South Shields to run his 50th Parkrun, which also took him to 1000 miles ran in 2017. An awesome achievement, which I slept through so he went for breakfast and cake with his running friends.

New Years Eve I woke up in the evening, and just before midnight put the telly on to watch the London fireworks and spoke to Sammie through messenger. The fireworks were awesome to watch, even though I’m torn on whether it’s a good thing or not. Once they finished the telly went back off as it was a bit much for me, but I’m glad I got to see the pretties and virtually celebrate with Sammie.

Payback is hard to deal with, as it makes all my normal symptoms much worse and adds in new ones which isn’t great, especially when I’m already in relapse from the successive colds. It’s a lot easier to deal with though when it’s due to doing something nice. I know that with rest and patience it will pass, and hopefully I’ll be able to get out of bed and do stuff again.

Since my last blog post I bought a new Android tablet, as my old Galaxy Tab S was freezing, randomly rebooting and generally being less reliable. It had lasted 3 years including many drops and falls, so I’m happy with that. I replaced it with a Google Pixel C, which is much faster. I also bought a chunky case for it immediately, to protect it from the inevitable drops and to make it much easier to hold.

As my new tablet went on sale the day I bought it, I used some of the money I saved to buy a Google Home Mini. Within a couple of hours of playing with it, Johan wanted one so we now have two. I already had wifi plug sockets that I could control, then on Black Friday the Philips Hue starter set I’ve been eying up for years was reduced to its lowest ever price, so I grabbed that. I have one bulb in my bedroom (currently in the lamp clipped on the back of my bed) and Johan put the other two in the living room and his room. Though it doesn’t always understand what we’re saying, being able to control the lights with our voices (including my text to speech if I’m nonverbal) is amazing, and I’ve set up custom phrases to set my light to purple, make my light change colours and such. It’s also good for reminders and simple searches when I’m not wanting to leave the app I’m using on my tablet.

Our Christmas tree from last year ended up being broken, so it’s been replaced with a black fibre optic one. Johan is very happy that he didn’t need to set up lights, and I’m happy because they’re twinkling slowly enough to not make me worse and aren’t too bright. We plugged it into one of the the WiFi plugs so I can turn them on and off by myself (including using the Home Mini) and this year it was fully decorated for an entire 10 minutes! Then the penguin on the top fell off. For next year we’ll either need to get a better penguin topper or a way to secure the penguin on there, but even without it’s very pretty.

Below is my game stuff which I know is more boring 😛

I still miss World of Warcraft, but I’ve only been able to go on my computer a couple of times in the last couple of months, and on the surface not much more than that. I’m hoping once I get out of my relapse I’ll be able to resubscribe and play again.

For now I’m sticking with my tablet games. The main one I’m playing right now is Animal Crossing Pocket Camp. It’s perfect for me, as I couldn’t use the controls to play the full version on the DS, and it’s simplified so it works even when I’m very foggy. At the moment I’m level 56 (of 64), have invited all the animals to my camp, have 2 of 5 top tier amenities (which let me level up the corresponding animals to 20), and have one of every is of flower in the garden. There’s still plenty for me to do, but I can spend only a few minutes or an hour depending on how I’m feeling at the time.

I’m still playing Neko Atsume, Godville and DragonVale. Neko Atsume I’m only missing the memento from Hermyown. In Godville my heroine has just completed my temple and is now saving for retirement and collecting wood to build an ark. In DragonVale I have one of every dragon, two of all but the most recent event dragons, and am working on rift traits for the dragons that can have them.

I occasionally play Gardenscapes and Fishdom when I fancy a match 3 game. I’m also occasionally playing sudoku, but I’m much slower and it’s very frustrating now my brain is so foggy. Puzzle games are normally my favourite but I need to be able to think to complete them.

I tried colouring apps but was getting anxious as I couldn’t decide what colour to use. Then I discovered cross stitch apps and they work much better for me. They work like colour by number, so I just follow the code and it tells me if I make a mistake. Once I’ve put the right colour in it won’t overwrite it with a wrong one, which is great as my hands can be quite shaky, and I can zoom in really far if needed so the boxes are big and easy to hit. I’m really happy to have found something I can do that’s relatively low energy and helps when I’m anxious. It helps that I can add my own pictures as the one I’m currently using doesn’t have any penguins by default. Penguins make everything better.

Danni

November? How did we get here?

Autism, Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

The short version: I’m not doing very well. The long version:

  • Care home didn’t improve much. We put in an official complaint before I left and heard nothing. When we’ve got the energy, we’ll have to complain to social services and possibly the CQC. Coming home was horrible as I wasn’t well enough to travel, but I survived and was glad to be home.
  • On the 10th of September I managed to get out to watch the Great North Run! The care worker who took me discovered just how hilly where I live actually is. I saw Johan (for a few seconds – he is fast!) and lots of Running Ninjas and it was awesome! I probably shouldn’t have gone out but it was worth it.
  • Just as I was starting to get over the payback from going out for the Great North Run, I caught a cold. Unfortunately I’ve not recovered from it and in some ways I’m getting worse.
  • I’m no longer well enough to go on my desktop computer. Because of this, I’ve not renewed my WoW subscription. Since I’d had it active for at least 9 years, it feels weird not being able to even log into the mobile app. It’s hard to justify though when I was lucky to manage a couple of hours a month of game time. I’ll resubscribe when I’m well enough to play again.
  • I’m very grateful for the Surface right now. It’s easier for me to use than my desktop computer, especially as it has a touchscreen. I also don’t have to stay in a certain position to use it like I do my desktop. I can’t use it as my main tablet but I’m using it now to type this and it lets me video chat to Sammie on the rare occasions I’m able to use it while she’s online.
  • Sleep is still an issue. Mostly hypersomnia, but occasionally insomnia due to anxiety. Even when awake I’m spending most of my time feeling incredibly dopey and out of it. Today I’ve cheated and am drinking caffeinated drinks to be productive, but I have to be careful as it can cause really bad payback.
  • I’ve not been out of bed at all since the Great North Run. Even moving for pad changes and stuff is very painful and exhausting. I’ve also not been able to have a proper wash so I’m a bit smelly (though I’ve had wipe downs a few times and change my top every week or two). I’m hoping to have a bed bath soon, though a shower seems far away right now.
  • After lots of letters back and forth confirming stuff, we now know where the PIP tribunal will be (the local law courts as I’m only mostly bedbound, not completely and it’s pushing distance) but we’re still waiting on a date. I’m hoping they’ll let Johan speak on my behalf as my ability to think drastically decreases when I’m sat up (even when my chair is fully tilted and reclined).
  • We have new upstairs neighbours. One of them is a toddler who sounds adorable! Our main “issue” is dragging furniture being loud which compared to what we’ve previously had is barely anything. Baba cries sometimes but other than wanting to help them it’s not a problem (though my boobs do occasionally hurt like they used to- I’ve not breastfed for over 13 years so no idea what that’s about).
  • Not able to do any loom knitting as my hands won’t let me, but I’ve got lots of light up stuff and glow sticks that I’m enjoying. Some have been presents from awesome friends, including colour changing penguin lights from Vivacia Dreams which are amazing.
  • I’m sad I had to spend Halloween and Bonfire night in bed, but I did have Halloween snacks and wore my penguin mask which scared the evening care workers. I slept through Bonfire night so missed all the noise.
  • Worked out that I can put a fleece top on myself if I have it cut open through the back, like a backwards cardigan. It feels better than wearing a cardi or hoodie backwards as I was before. Got two so one can be in the wash. I did look for back opening tops but they’re both expensive and very institutional/old ladyish.
  • Also bought an electric hot water bottle. Too heavy and difficult for me to manage myself, but it stays warmer than the penguins and will be useful for when I go out again (especially as plug sockets are easier to find than microwaves). It’s so hot I had to buy a cover for it.
  • Finally saw the GP. Trying prochlorperazine again (as cyclizine is causing tachycardia), and have been prescribed peppermint capsules to hopefully help with digestive issues. They’re also going to ask Professor Newton about maybe having meds to help with the POTS, and we told them about the tribunal and me not being female and stuff. I’ve also asked to be checked for any nutritional deficiencies as my eating still isn’t amazing and we never checked they were gone after the last lot of supplements ran out. I hate blood tests but if this relapse is being caused or made worse by something treatable then it’s better to know and fix it.
  • Johan is still running. He completed an official marathon last Sunday, which he’s very happy about. He’s also pretty fast, coming 5th out of over 40 runners. He’s also still working on Vostok Inc. as volunteer QA and enjoying it.
  • We’re working on getting more organised and starting today the cleaner is coming for 2 hours instead of 1 each week. I also have my storage unit built which is helping as I now have places to put things.
  • Penguins continue to be awesome.
  • WTB Greater Heal pls