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 πŸ˜›

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.

Gaming Update

Good news everyone! I think I’m over the relapse! On Wednesday I went out (into Gateshead for Burger King and shopping in Tesco because it was evening and there wasn’t much else open) and it was fun. I’ve also been able to go on my computer a bit more, which is making me very happy (not least because Smartflix is awesome and has tons of shows that I can’t stream on Netflix using my Chromecast without lots of config I’m not well enough to sort). I’m not that much better than I was, but the small amount I am is the difference between lying in a darkened room and being able to go on my computer and go out. Tiny things like being able to tolerate a bit more light, noise, movement and touch, and not needing to be completely flat. I’m so happy to be able to do stuff, as that relapse lasted a bit longer than mine usually do so I was scared it was becoming my new normal. The only issue now is I seem to be mostly nocturnal, which makes communicating with people and doing things hard πŸ˜›

One thing I have been doing is playing games. The rest of this post will be about them so it’s likely to be of no interest to anyone but me πŸ™‚ I’ve introduced Sammie to World of Warcraft (I’m sure it won’t be long until she’s better than I am) and recruit a friend makes levelling fast. I’ve not played as much with her as I’d have liked but hopefully we’ll get more time now I’m doing better. When I’ve been on when Sammie’s not I’ve been doing a bit of work on the legendary ring quest chain. I got my third elemental tablet thing so my ring is now item level 715. The next step is to get Blackhand’s arm which is kinda disgusting but at least it’s not going through poop. I’m hoping to work on getting Pepe soon and pet battles.

On my tablet I’ve been trying new games, and playing old ones. In DragonVale I currently have 248 of 269 total dragons, and of those currently available I need about 6. There’s a few more than I can get with help through the co-op breeding cave but the earliest I can complete the collection is during Bring it Back in December. I’m happy with the progress I’ve made though πŸ™‚

I’ve been playing a lot of Neko Atsume and recently got every single memento in the game. I already had every goodie so now I’m slowly working towards getting every theme and hoping they release new content. The cats are so adorable though so I’m really happy to play it.

In High School Story I’ve managed to complete all the current story lines, which I wasn’t expecting to do yet. I’ve got 15 classmate rares still to get (I’ve got the common gender of each type already), but I’m in no rush. I’m current working on getting a female hacker. I was frustrated that some of the goals seemed nearly impossible but they have been a bit easier recently so I’m happy there.

Hollywood U has been a bit more frustrating on the goal front, not least because they often don’t show up when they’re meant to so I end up getting less time (I missed nearly a day for this week’s). I’ve completed all the quests so I’m just working on the goals and getting both Critics, as they’re the new type and I’ve not managed to get either yet. It’s only been a few days though.

I’m still playing Kim Kardashian Hollywood, though I’ve come close to quitting a few times. The issues I was having seem to have been fixed, and though it’s still buggy it’s playable now. I’m level 39, number 1 on the A+++ list, and have mostly completed the quests, other than the most recently released ones. I try not to worry about the weekend events, so unless there’s something I really want as a prize I just do them as and when. During the week I also work on levelling the VIPs through Hangouts and jobs, though I’ve only ever got the special reward once. At least it doesn’t require much concentration.

A new game I’ve been playing recently after being invited by a friend is Happy Street. I’m still not entirely sure what I’m doing, but it’s cute (if a bit obsessed with poop) and I seem to always have something to do so I’m keeping it for now.

I’m also trying Britney Spear’s American Idol at the moment. It’s not officially available outside of New Zealand, which explains why none of my friends are playing it. The game is pretty fun but very laggy so there needs to be some work before it’s released more generally. It’s a pop version of the Kim Kardashian Hollywood game, but more purple. My character is called AdΓ©lie Gentoo and all my songs are about penguins πŸ™‚

One game I tried and then gave up on with Kendall and Kylie. That game is so slow I can read a chapter of a book in the time it takes to load (anything from 3 1/2 to 7 minutes). For a mobile game it’s terrible. Not only that, but since update 1.1.0 the game doesn’t seem to save correctly, so any progress is lost. More recent updates don’t seem to have fixed it. Luckily I’d already reached level 8 for the crossover stuff in Kim Kardashian Hollywood, but until they do some major work I won’t be playing any more of it. It’s a shame as I quite enjoyed the storyline.

Other games I’ve got installed on my tablet right now are AdVenture Capitalist, 80 Days, The Room 3 and a couple of different Sudoku games. I’m currently waiting for AdVenture Capitalist to be completable sometime this millennia (no joke), 80 Days I got annoyed with as I missed a couple of connections due to brain fog so I’m taking a short break before trying it again, and the Room 3 I’m playing in bits as it requires quite a bit of cognitive energy. The sudoku games are fun for me and a way of judging how I’m doing mentally- the logic required is normally very easy for me, so if I’m struggling to complete an expert puzzle or easy killer sudoku I know I’m not doing great. If I can’t solve one of the easier ones then I know I need to rest.

The last game I have is Hearthstone. For a while it was unplayable on my tablet, but I reset it while installing a newer version of my rom and it’s running better now. I’m mostly playing the Tavern Brawls when I get the chance, as I don’t know the current meta game well enough to work on ranked. Hopefully now I’m getting on my computer a bit more I’ll be able to play some Heroes of the Storm and other games, but with having to do adult stuff like paying bills, sorting money and food shopping when I’m on here as well I’ll have to wait and see if I can manage it more frequently.

What’s Health Again?

A quick blog post as I want to blog at least monthly, but this month I’ve not been well even for me. January relapses are normal but this one is lasting longer than I’m used to.

I have a cold. I’ve had it now for several weeks, might now be months. I’m sleeping a lot, though my FitBit is telling me that I’m getting a lot less sleep than I realised (will sleep for a 13 hour period but only actually get 8 hours of sleep in that time, as I’m waking up so much due to pain/not being able to breathe/nightmares). I’m very lucky if I manage mood than an hour of uninterrupted sleep a day. I don’t even remember what a sleeping pattern is.

I’ve managed to go on my computer twice, which is less than normal for me. There are some things I can only do on my computer so I’m frustrated but pushing myself results in being worse. I spent 15 minutes in my chair at the beginning of the month to have my sheet changed but haven’t been well enough to go back in it. That small amount of extra dizziness, pain and exhaustion makes such a difference in what I can do. Anxiety because the care agency still isn’t doing what I need them to doesn’t help.

Good news is Johan almost has a passport. He went for the interview on his birthday and it went well so he’s just waiting for it to arrive. It’s awesome seeing him so excited. He’s planning on going to Sweden in the summer to play games very fast and see friends who also like playing games very fast. When my body has been behaving enough I’ve been eating the goodies we were given for Christmas. Gingerbread penguins and posh fudge are very nice, and not too bad when they reappear multiple times πŸ˜› I’ve also had McDonalds which I caused me less pain than most other foods, because my body is weird (only the lettuce caused issues).

I’ve got so many plans for when I next go on puter and go out. Taking my Deed Poll to the bank to get my name changed, and sending it to the people we’ve not managed to contact yet. Playing World of Warcraft. Talking to Sammie (I miss her the most when too ill to talk). Going for a meal with Johan for his birthday (he went out by himself but it’s not the same). Hopefully writing letters/emails, though they take more cognitive energy than I’ve had for a while. Having proper cuddles. I’m hoping this cold will be over soon, or at least I’ll have another slightly better day so I can manage something. I’m sure it’ll happen πŸ™‚

I’ve been so grateful for my friends the last few weeks. Sending me penguins (especially for Penguin Awareness Day). Giving me (online) Squishes. Being understanding when I disappear from Twitter and Facebook for a bit. My cousin Elka linked me a penguin shirt that had a picture of a penguin made up of lots of little penguins, and I bought that and it arrived yesterday. I can’t wait to be well enough to get changed into it. It’s purple and long sleeved and awesome.

This ended up longer than I expected. Brain dumps are definitely the easiest form of communication. Time to go back to sleep and hopefully stay asleep this time. I can hope πŸ™‚

Happy New Year! 2015 In Review

Happy New Year!

Belated Merry Christmas and Happy Newtonmas πŸ™‚ I had a good Christmas, followed by a short crash but luckily we got things sorted quickly enough it only lasted a few days and I’m back to nearly Danni-normal again πŸ™‚

This month has been up and down a bit, saw the community dentist the second time I tried (first time couldn’t get on the bus because the driver wouldn’t let me on because of prams) and have been referred for my teeth to be sorted out under a general anaesthetic as no other option for me. I went to Enchanted Parks as well and that was awesome. So many pretty lights and displays! Mostly been in bed otherwise but did get up when Sammie came to pick up her presents and talk πŸ™‚ I knew then that no matter what happened it was going to be an awesome Christmas.

On Christmas Day itself I watched a church service on the telly, opened many presents (thank you everyone who sent me cards and presents), had roast hog for dinner, along with Johan’s homemade roast potatoes which were the nicest potatoes I’ve ever had even though it was his first time, and watched the Doctor Who Christmas special which was awesome. A great day. I also spoke to Sammie on both Christmas Day and her 12th birthday which was the best. Totally worth the payback afterwards πŸ˜€

Anyway, every year I fill out a silly survey about the year that just happened. I’ve just watched the new year come in and I’m gonna do it now while I remember πŸ™‚

1. What did you do in 2015 that you’d never done before?
Get a hoist! Meant I could get into my wheelchair and go into Gateshead and Newcastle for the first time in a few years. Also started making things with loom bands.

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I managed 2 of 4, and most of my goals (including the 50 books read this year). I’ll make more in the next few days. I’m happy with how I did overall, as a couple were ambitious (and relied on other things happening that didn’t).

3. Did anyone close to you give birth?
Yes! More babies this year so a Facebook feed full of cuteness!

4. Did anyone close to you die?
Yes πŸ™ My good friend Ron died a few months ago, and my grandma died earlier this month. I was too ill to go to their funerals πŸ™

5. What countries did you visit?
I stayed in the UK, but did go into Gateshead and Newcastle for non-medical reasons! That was awesome!

6. What would you like to have in 2016 that you lacked in 2015?
I need that shower chair still πŸ˜›

7. What dates from 2015 will remain etched upon your memory, and why?
My memory is terrible for dates, so I’ll remember events (Sammie visiting, Ron and my Grandma dying, going out) but not exactly when they happened.

8. What was your biggest achievement of the year?
Going into Newcastle, being in my chair for several hours with the only payback being needing to sleep more. More of that please πŸ™‚

9. What was your biggest failure?
My health and my memory.

10. Did you suffer illness or injury?
Mostly just ME stuff. Got a rough diagnosis of POTS (too ill for a tilt table test) but I’ve had the symptoms of that since I was 12. Nothing new so that’s good I guess πŸ™‚

11. What was the best thing someone bought you?
Like I said last year, I appreciate everything that people bought for me. So many penguins and ponies πŸ˜€ One of my Christmas presents from Sammie is a heart shaped cushion with her on it. I think she’s abseiling but I might be wrong there πŸ˜›

12. Whose behaviour merited celebration?
Same answers as last year: Johan and Sammie πŸ˜› I think Esther has also done really well this year as well.

13. Whose behaviour made you appalled and/or depressed?
Still the government. Things are getting harder and harder for my friends because of them, and I don’t know how to help πŸ™

14. Where did most of your money go?
Same as last year: food, bills, disability stuff. I did buy a new cooker which was much needed.

15. What did you get really, really, really excited about?
This answer will be obvious to anyone who knows me: Sammie and penguins πŸ˜€ I can add going out to that list this year πŸ˜€

16. What songs will always remind of 2015?
Although I’ve listened to some music this year, I’ve not really listened to anything recent so I don’t think I’ve got a song that would remind me of this year πŸ˜›

17. Compared to this time last year, are you:
a) happier or sadder?
Mostly happier πŸ™‚ Had a few sad periods but I think overall being able to go out has boosted my mood loads, as has being in pretty regular contact with Sammie.
b) fatter or skinnier?
Fatter πŸ˜› As I was underweight, this is a good thing. I’m still not where I need to be but eating has been a bit easier this year. Still malnourished but continuing to work on that.
c) richer or poorer?
About the same.

18. What do you wish you’d done more of?
Going out πŸ˜› Glad I managed it though.

19. What do you wish you’d done less of?
Relapsing, though I did so less than 2014. Being anxious.

20. How do you plan to spend Christmas?
Christmas was spent talking to Sammie, watching telly and eating the amazing roast dinner Johan made me πŸ™‚ Next year, I hope to have the entire tree decorated (this year only managed lights and star, last year it was missing the lights).

21. Did you fall in love in 2015?
The babies! So cute! Especially Amy who came to see me πŸ™‚

22. How many one night stands?
None. Didn’t even try standing this year πŸ˜›

23. What was your favourite TV programme?
Doctor Who, Great British Bake Off and Steven Universe πŸ™‚

24. Do you hate anyone now that you didn’t hate this time last year?
Nope. Still don’t actually hate anyone. I dislike the government, but that’s different.

25. What was the best book you read?
What If? by Randall Munroe. Thank you Sammie for prodding me to actually read it πŸ™‚

26. What was your greatest musical discovery?
Google Play Music. They are pretty good at guessing what I want to listen to (though they do get it really wrong sometimes).

27. What did you want and get?
A hoist! Freedom at last! Also spoke to Sammie loads and got to see her. Some support for Johan.

28. What did you want and not get?
A shower chair. Apart from two baths in the care home, I’ve not been clean all year.

29. What was your favourite film of this year?
I’m torn between Big Hero 6 and Inside Out.

30. What did you do on your birthday?
Sleep mostly πŸ™‚ I think I spoke to Sammie as well. Opened lots of amazing presents (including a penguin balloon to walk!).

31. What one thing would have made your year immeasurably more satisfying?
Being able to get properly clean at home.

32. How would you describe your personal fashion concept in 2015?
Tops, leggings and pyjamas. Penguins were also involved πŸ™‚

33. What kept you sane?
This never really changes πŸ™‚ Sammie, Johan, penguins, and friends.

34. Which celebrity/public figure did you fancy the most?
I can’t think of any.

35. What political issue stirred you the most?
The welfare cuts again. Sanctions in particular are getting really bad.

36. Who do you miss?
I really miss talking to Ron. It’s not been the same being on Twitter since. He would have been so proud of Johan’s potatoes. I also miss seeing my friends and family, but talking online helps.

37. Who was the best new person you met?
Probably Marga and Amy. Amy is adorabubble!

38. What was the best thing you ate?
Johan’s roast potatoes. No contest.

39. Tell us a valuable life lesson you learned in 2015?
It will take several explanations before people will accept sitting upright is a bad idea. Especially nurses and care assistants.

40. Quote a song lyric that sums up your year:
Here’s a penguin, there’s a penguin and another little penguin. Fuzzy penguin, funny penguin, penguin, penguin duck. (Not actually a song, but I’ve sung it. The duck mentioned belongs to Amy.)

Black Friday

Today I took advantage of some of the sales to do most of the Christmas and birthday present shopping for Sammie. Have just one main item left to get and as it’s tech am waiting for Monday (though I’ll keep an eye out before then). Being able to do shopping from bed made it so much easier- I wouldn’t want to be shopping outside today. Tomorrow the bulk of them get delivered and hopefully we’ll be able to get them wrapped in the next couple of weeks. Need to buy wrapping paper first though πŸ™‚

When Sammie got home from school we spent time talking, playing a game of Hearthstone and watching YouTube videos. It was nice πŸ˜€ Talking to her cheers me up loads, even when I’m already happy πŸ˜€ Johan joined us and it was funny seeing how they interact as they have a similar sense of humour. Talking to two of my favourite people in the world at the same time is awesome so I had a brilliant day.

Didn’t manage going out as though I was well enough, the weather was absolutely appalling and it would have been pretty late. We’re rearranging it for a day when we don’t have a weather warning and we have more time.

After Sammie went I spent time watching more Hell’s Kitchen with Johan. Personally I wouldn’t trust any of the chefs to run a kitchen, but I know very little about cooking. Still, raw meat and poultry is not good. We’ve only got a few episodes left of this season so we’ll probably finish them tomorrow.

Penguins are awesome. Friends sent me pictures of penguins and that was amazing. I am so so lucky to have such great family and friends. I don’t know why but I’m so grateful. *Flaps*