Merry Christmas!

I hope you all had a good time, no matter what you may celebrate.

So I failed on the weekly blog post thing. There were good reasons – in November not only did I go to watch fireworks on Guy Fawkes’ Night as I mentioned in the last weekly post, but I also went into Newcastle and had a meal with Sammie! It was very much last minute as that Tuesday (Johan’s free day) I was feeling up to it, and luckily Sammie was free as well. I then had a couple of colds back to back, and this month I both got my new wheelchair (which meant sitting in it for an hour or so as it was adjusted to my needs) and managed to go watch the Gateshead Parkrun at Saltwell Park and then go to breakfast with the Running Ninjas.

All this going out (and having colds) has meant I’ve not been on my computer or laptop, and it’s much easier for me to blog from them. Also the more physically active I am, the worse I get cognitively, so just managing the process of trying to write a blog post was too much for much of it.

I think for next year I’m going to drop it down to monthly. I still want to blog the notable things I do, but without as much pressure. I’ve managed to continue my daily dairy, even if some days all I do is press the activity buttons (the reason I chose Daylio as my diary app in the first place). I also hope it’ll mean I get around to writing some of the other blog posts I wanted to, such as what equipment I find most useful and ways of getting around problems when bedbound.

I had a good Christmas. Got ridiculously spoilt, with a Bilbo Bbox (filled with goodies like a calendar, mug and stickers featuring Bilbo, the good orange boy), a Spoonie Survival Kit, many penguins and penguin-related items, chocolate, and other stuff I’m too forgetful to remember right now 😛 Sammie came over a few days before, and that was awesome and I got squishes!

Johan cooked Christmas dinner, and his potatoes were again the best ever, his pork and crackling were perfect, and it was just a really good meal. I was well enough to watch some telly, so watched The Good Dinosaur, The Jungle Book and Zog. Three films in one day 🙂 I also managed to speak to Sammie and she was having a good day.

Boxing Day Sammie turned 15, which is kinda scary. She got some awesome presents, her favourite being a visit from a friend to help her celebrate. She is really caring and awesome, and I’m really proud of how she’s growing up. Johan nearly cried over the message she wrote to him on the gift tag of his present, which is not normal for him. I’m hoping the next year is good for both of them.

New wheelchair is awesome. It actually fits me, and as it’s more supportive I don’t have to be fully reclined all the time (I have been working on being sat more upright as well, which has been helping). Provisional name is Tank 2, as it weighs even more than my old one, but it’s apparently easier to push, and Johan can even run with it a bit. I’m really happy to have it, and I want to look into (non permanent) ways of decorating it because it’s plain black and that’s not me.

I’m hoping that next year will be good. There’s fireworks on the Quayside to celebrate, and if I’m well enough I want Johan to take me onto the ramp where I can see them (living up a hill has its advantages). If I can’t, that’s okay. I’m working on my goals for next year, but that’s for another blog post.

Tank, My Wheelchair

(I will eventually catch up with the weekly review posts (or make them monthly) but right now I wanted to blog about something else.)

Next week I’m getting a new wheelchair. After a few years and about three referrals, I’m finally getting one on the NHS. I’m not entirely sure what type it is, but it’ll tilt, recline, have a proper headrest and should fit me. It’ll still be a manual, and it’ll have small transit back wheels to reduce the width.

For the last few years I’ve been using the wheelchair we call Tank (or The Tank). It weighs a ton, has elevating leg rests I can’t use because my legs are too long, and the headrest is the wrong type so I need a pile of cushions to be able to sit comfortably in it. I was very lucky to get it – a friend spotted it on eBay, listed as not working (but in the description saying it was) and I ended up paying £95 for it, about half of which was delivery. Without that chair, instead of being mostly bedbound the last few years I would have been completely bedbound.

I love Tank. With it, I’ve been able to go on many adventures. Sometimes only to the local shop, but also to see fireworks and Sammie’s school play. It’s also how I get around the flat and to the care home for respite.

When I got it my ability to sit upright was limited to 30 minutes with a chest strap (5 minutes without), and it wasn’t long before even that became impossible. I soon realised that being able to use a standard wheelchair again was going to take a while, so I gave my old one to someone who needed one. When I first got it I mostly only needed it fully tilted and slightly reclined unless I was resting in it, but for a while now I’ve needed it fully tilted and reclined or I get really dizzy, nauseous and feel faint. I’m incredibly grateful it has those functions.

It’s going to be weird using a different wheelchair after having this one for over 6 years. It feels like an extension of me, and because of that only people I trust are allowed to sit in it. The only differences to when I got it (other than making it as tall as we could) are the replacement front forks and wheels from when one got damaged earlier this year, and the penguin duck tape on the arm rests, but the penguins made it clear that it was mine.

I’ve not used it as much as I’d have liked to. Once I lost the ability to transfer safely, we had to wait for the hoists to be installed, which took 3 years. The only times I used it (with Johan literally dragging me in and out of it) was to vote and to go into respite. Since the hoists were installed I’ve been able to use it a bit more often, but I’ve also been more ill so haven’t used it as much as I’d have liked.

I got some looks and stares when I used a standard wheelchair, but they massively increased when I started using the Tank. Partially due to this, I started wearing more penguin items (and carrying more penguins) so I could pretend that’s why they were looking (for at least some people that is probably true). Young kids have some varied reactions, from scared to excited. I tend to smile and/or wave at them, and like when I get a response back. For slightly longer interactions, I bring the penguins into it, especially if they have a soft toy themselves. I’ve only had a couple of questions from kids, but I don’t mind answering them.

Adults are harder to deal with. I’ve had one person declare that I’m not disabled as I can move my legs (newsflash – wheelchair use does not require paralysis), random people making comments (such as “comfortable there?”) but what can be more irritating is people trying to help. I know this can be bad for most wheelchair users, but as I can’t self propel I bring my own dedicated pusher (almost always Johan) but though he’s capable of pushing me pretty much anywhere, that doesn’t stop some people trying to grab at my chair to supposedly help. I don’t like being touched without warning or by strangers, and as my wheelchair is a part of me that includes my chair, and it can jolt me, which causes a lot of unnecessary pain. This was especially bad when we went to the firework display last Guy Fawkes’ Night, as the grass was slightly uneven (and it was dark) so every wobble someone would grab at my chair, often without even asking. I don’t usually mind offers for help (especially for things like doors) but if either of us say no, listen and don’t grab at me. It doesn’t help and it can hurt. At least this time no-one tripped over my footrests as I put lights on them (what happened last time I went, as it’s longer than expected).

I’m going to miss some things about this chair. Giving up the self propel wheels will mean that I won’t be able to do my 3 metre push in a shop every other outing (as I’m not strong enough to push further), but it will mean that the new chair won’t be too much wider than my current one (which has a 14″ width seat, which is small). It’ll also mean my coat won’t catch on the wheels and it might be slightly easier to get into certain places. I’m also going to miss the pile of cushions I used for supporting my head, as though a proper headrest will be better, I did like that I had lots of penguin cushions. I’m sure I’ll figure out some way of penguinfying my new chair though.

I am looking forward to getting my new chair. It should work better for me, and I’m hoping for a more pressure relieving cushion as I was getting sore from mine. It’ll also be good to have someone else responsible for the maintenance. Tank has been awesome, but it was always meant to be temporary. That just ended up being longer than expected.

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 43 Review

Danni in bed with short, messy, unwashed hair.

I did remember to take a photo this week, even if it was nine minutes to midnight on Sunday evening while writing the previous post. One day I might do something with my hair, like comb it or wash it 😛

The beginning of the week I was mostly useless due to payback. When I wasn’t sleeping I was feeling completely rubbish, and even handholds were very painful (though I still insisted on them as I need them). 

Thursday I finally started coming out of it, and after debating options, decided going on my computer was my preferred activity as touch was still too painful for practical things or being hoisted, but typing and moving a mouse I could do. Had loads of emails to sort out and I spoke to Sammie which was good. I also played WoW, probably for too long as I came off Friday morning due to pain, which then stopped me sleeping for a while. Whoops. I also realised that my digestive system had basically been on strike for two weeks, and made a plan with Johan that if I couldn’t sort it out myself that weekend, then we’d get the nurses in.

Luckily on Saturday it woke back up, and as I knew I’d be pretty constipated after over 2 weeks (even with eating less than normal due to payback) used a suppository to help things along. I am so grateful they work for me, and without anywhere near as much pain, nausea and vomiting as laxatives. Still not fun but it could be worse. As usual I was knackered afterwards but it was expected.

Sunday I managed more computer time so video chatted with Sammie, and watched Doctor Who. It’s a good thing I’m not scared of spiders! Spent several hours working on the last blog post, much of which was fighting with the lists as they kept breaking. It’s been a long time since I had to write lists out in html but the visual editor wasn’t working. Hopefully it’ll work better today. (It didn’t. I’ve reverted to the classic editor even though I like some aspects of the Gutenberg editor because constantly editing html is too much right now, but it has just been reported on GitHub so hopefully it’ll be fixed soon.)

  • Overall mood – Mostly good, with Thursday and Friday being awesome. High symptoms except Thursday and Friday.
  • Average daily sleep – 11 hours 20 minutes
  • Longest sleep – 17 hours 4 minutes, from Saturday evening to Sunday morning
  • Clothes changed – 0 (too much pain)
  • Wipe wash – 0 (ditto)
  • Water wash – 0
  • Hair wash – 0
  • Books read – 0 (I think I need to pick an easy fiction book)
  • TV watched  – Doctor Who
  • Streams watched – 0
  • Youtube watched – Caught up on Wednesday and Thursday
  • Music listened to – 0
  • Podcasts listened to – Episode 62 of Welcome to Night Vale
  • Blog posts written – 1
  • Penguins cuddled – Nicky and Isabella
  • Johan hand holds – Yes, even though they hurt
  • Johan hugs – 0
  • Time on Twitter – 11 hours 10 minutes (average 1 hour 35 minutes a day)
  • Time on Reddit – 19 hours 56 minutes (average 2 hours 49 minutes a day)
  • Time on Facebook – 27 minutes
  • Other –
    • Twitter is good for not feeling so lonely. And Bilbo pictures.
    • Reddit is good for entertainment when brainfoggy. And cute animal pictures.
    • Doctor Who was awesome. And scary. I would have liked to watch it with Johan but he wanted to go on his computer instead.

Game Stuff

  • Games played – 7
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • World of Warcraft
    • June’s Journey
    • Pearl’s Peril
  • AC: Pocket Camp Level – 131
  • Godville Heroine Level – 60 (84% done)
  • Godville wood for ark – 47.2%
  • Godville savings – 2 million, 122 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing (12 hours 5 minutes, average 1 hour 43 minutes a day)
  • Other –
    • Fishing event in Animal Crossing. Played a lot and managed to finish it with just under a day to go. Did use the gold fishing rod though.
    • Got Storms Wake to exalted in World of Warcraft. Only Proudmoore Admirality and Tortollen Seekers left to do.
    • June’s Journey is really fun. Pearl’s Peril is also good.
    • Gaming is awesome 🙂

Week 40 Review

Happy Danni in bed, wearing a maroon headscarf with penguins on, and a black t-shirt with 6 penguins, showing various things you can be.
You can be anything you want to be, including a unicorn, a wizard, a rockstar, an astronaut, a king or a killer.

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.