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 29 Review

Danni and Johan are outside. They are both smiling.

Danni is in their wheelchair. They are wearing a purple mermaid tail.

Two photos! One outside our front door before travelling to the care home, one in my bedroom in the care home.

Been a bit of a mixed week. Monday I was preparing to go into the care home, and Tuesday was the day I went in. During the day it’s mostly been okay after resolving some misunderstandings (I asked for hourly checks as I’m not able to use a buzzer, and they thought that meant waking me up every hour). Night time, not so much. There aren’t enough staff for someone to check on me hourly, and that means lots of pad leaks and needing entire bed/clothes changes and washes, which make me feel horrendous.

Johan is in Sweden for ESA Summer (ESA as in European Speedrunning Assembly, not one of the other ESAs). I’d much rather be with him or at home, but that’s not an option so I get to stay in a care home for a couple of weeks instead. The staff are fine, but it’s not home and they’re not really used to someone like me (mostly able to communicate but needing prompting for things I need). This time I brought the Surface and my normal Tablet, and I had downloaded some shows to watch to save the data on my phone.

Didn’t get out of bed this week after arriving, mostly because of feeling rotten from the journey/needing lots of bed changes/exhaustion from trying to cope with a new environment, new people and stuff. My room is really hot and I didn’t think to bring a fan. I do have Poseidon, Primrose, Nicky and Isabella with me and have been talking to Johan and Sammie through Hangouts. I’ve also spent far too much time on Reddit, as it’s the only thing I can concentrate on at times.

  • Overall mood – Mostly good with high symptoms, as was only tracking once a day.
  • Average daily sleep – 10 hours 29 minutes
  • Longest sleep – 18 hours 57 minutes from Saturday night to Sunday evening (deep sleep 61%)
  • Clothes changed – 4
  • Wipe wash – 1
  • Water wash – 3
  • Hair wash – 0
  • Books read – 0
  • TV watched – Doctor Who Series 10 Episode 3
  • YouTube videos watched – Lots
  • Streams watched – Penguin Cam and stuff on Twitch
  • Music listened to – Random selection from Google Play while travelling to care home
  • Podcasts listened to – 0
  • Blog posts written – 1
  • Penguins cuddled –  Yes 🐧🐧🐧
  • Johan hand holds – A few before he left
  • Johan hugs – 0
  • Time on Twitter – 9 hours 1 minutes (average 1 hour 17 minutes a day)
  • Time on Reddit – 33 hours 1 minutes (average 4 hours 43 minute a day)
  • Time on Facebook – 5 minutes
  • Other –
    • Migraines are evil. Had to cancel a visit because of one.
    • It’s noisy here, especially as some residents have dementia and spend most of their time shouting or screaming. Still better than our upstairs neighbours at home though (as it’s not arguing).
    • Wanting chocolate but Amazon is rubbish for it.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 115
  • Godville Heroine Level – 56 (75% done)
  • Godville wood for ark – 33%
  • Godville savings – 1 million, 396 thousand
  • Cross stitch completed – 0
  • Most played game – Animal Crossing Pocket Camp (4 hours 10 minutes, average 35 minutes a day)
  • Other –
    • New Gyrodite event in Animal Crossing. Not been concentrating much on it.
    • Not been playing much of my other games either, mostly logging in for daily bonuses and that’s it.

Week 24 Review

No photo for the same reason this is late- the shower really wiped me out.

Slept most of the week. The payback was expected but not exactly wanted. Before it got too bad, I watched quite a bit of Genna Bain’s E3 Snarkathon, which I enjoyed. It’s different with her doing it by herself but I’m glad she’s been able to continue it.

Johan phoned to reduce our TV package because we weren’t really watching anything other than the Freeview channels. They couldn’t do it until we’d replaced the old Virgin HD box with the new V6 box. Johan decided to have the new box put in my room as I have the big telly, and have the Tivo box that I already had put in the living room. That happened on Thursday which was good. It’s a lot quieter and much quicker so it’ll be worth using once I’m up to it.

I got my wheelchair fixed on the Wednesday, which I’m really happy about. I can’t wait to be well enough to use it again. Johan is also happy as he uses it to watch things on my telly with me when I’m well enough to have company 🙂

Johan did a lot of running. He missed his metro for one race because I woke him up during the night and he cancelled his alarms, and I didn’t realise until quite late. We went halves on an Uber so he could make it in time for registration and he did well in the end.

Sunday I had a migraine but luckily it was a short one. I’m so grateful that if I have all the medication (I’m allowed) that I’m able to sleep through the worst of them. The pain is bad but sometimes the ME pain is worse so I can deal.

  • Overall mood – Awesome at the beginning because shower. Good the rest of the week. High level of symptoms because of the shower (especially complete exhaustion once the payback kicked in)
  • Average daily sleep – 11 hours 54 minutes
  • Longest sleep –  17 hours 30 minute from Thursday morning to Friday morning (deep sleep 57%)
  • Clothes changed – 0
  • Wipe wash – 0
  • Water wash – 0 (that shower was exhausting)
  • Hair wash – 0
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – Totalbiscuit (which is now Genna), vlogbrothers, Jessica OOTC
  • Streams watched – Rockhopper Cam, Totalbiscuit (Genna’s E3 Sony Snarkathon)
  • Music listened to – 0
  • Podcasts listened to –  0
  • Blog posts written – 1
  • Penguins cuddled – Yes 🐧🐧🐧
  • Johan hand holds – Lots
  • Johan hugs – 0
  • Time on Twitter – 3 hours 24 minutes (average 29 minutes a day)
  • Time on Reddit – 11 hours 43 minutes (average 1 hours 40 minute a day)
  • Time on Facebook – 31 minutes (average 4 minutes a day)
  • Other –
    • The shower payback definitely was worse physically than cognitively, which is why I could still watch stuff when not asleep
    • Even when not asleep, spent a lot of time out of it
    • TV Tropes and Reddit are good distractions

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 107
  • Godville Heroine Level – 55 (12% done)
  • Godville wood for ark – 27.4%
  • Godville savings – 1 million, 144 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing Pocket Camp (14 hours 3 minutes, average 2 hours a day)
  • Other –
    • Completed Elegant Amenity in Animal Crossing
    • Finished adding all the clothes to my Animal Crossing spreadsheet so I can track how many of each I have (because it’s hard to do in game)
    • My pet in Godville got knocked out, but managed to resurrect it in time.

Week 23 Review

Danni is smiling happily at the camera in bed. They are wearing a purple Orange Boy Fan Club top with an orange cat on it.

I am so happy I had a shower! Johan took the photo after I’d been sorted out in bed afterwards.
Mostly had a chilled out week, saving energy for the Sunday as Johan promised he’d shower me if I was well enough, no matter how he felt (after I’d asked him a few times and he didn’t feel up to it). I ate a lot of ham and pease pudding sammiches, because they’re nice and I remembered to buy the ingredients when I did the food shop.

I did quite a bit of sleeping, and reading Reddit/watching YouTube/playing mobile games when not resting. Sammie confirmed that her internet was more stable which I’m happy about.

I had to call Johan home early due to digestive problems, and had issues with my legs and hips due to how long I was lying on them (I have to sleep on my side as otherwise I can’t breathe properly, and though the alternating air mattress helps a bit it doesn’t fix all the pain).

Johan ran the Blaydon Races on the 9th of June, and I was able to follow his progress via his Garmin GPS watch, which I then live tweeted because I could. He told me afterwards that I knew before he did what his time was. Garmin said he took 38 minutes 9 seconds to run 5.6 miles, but his official result was 38:04. As he was wanting to get under 40 minutes he was very happy with this. Afterwards he went out with friends and came back less sober than he left 😛

A map of Blaydon that shows last part of the route Johan took, and run information such as finishing time.

Sunday was shower day and it took until the evening for me to be well enough, but it was awesome. Found another couple of things I need to improve on the shower chair to reduce pain such as lumbar support and some sort of cushioning on the foot rests, but that shouldn’t be hard.

I do want to find out why I can’t breathe properly when the shower is on my head and neck (and face, but that seems more obvious). We’ve got it on the lowest setting and the temperature is fine, but something about it makes me really breathless. It could just be pain as even on the lowest setting each water drop hurts, but it’s less of a problem below my shoulders. Makes washing my hair interesting but at least with it being so short right now it doesn’t take long.

  • Overall mood – Good, with a normal level of symptoms most of the week, high level Wednesday and Thursday.
  • Average daily sleep – 9 hours 19 minutes
  • Longest sleep – in 19 hours 1 minute from Thursday morning to Friday evening (deep sleep 59%)
  • Clothes changed – 2 (Gender is a Universe top, Orange Boy Fan Club top)
  • Wipe wash – 0
  • Water wash – 1 (I had a shower!)
  • Hair wash – 1 (Shower! Yay!)
  • Books read – 0
  • TV watched – 0
  • YouTube videos watched – Vlogbrothers, Tom Scott, Jessica Out of the Closet
  • Streams watched – Rockhopper penguin cam
  • Music listened to – 0
  • Podcasts listened to – Welcome to Night Vale (Episodes 33-37), Uncommon Sense (Episodes 0-2)
  • Blog posts written – 1
  • Penguins cuddled – Poseidon demanded the most 🐧🐧🐧
  • Johan hand holds – Yup
  • Johan hugs – 0
  • Time on Twitter – 3 hours 59 minutes (average 34 minutes a day)
  • Time on Reddit – 18 hours 17 minutes (average 2 hours 36 minute a day)
  • Time on Facebook – 21 minutes (average 3 minutes a day)
  • Other –
    • I had a shower! It had been nearly a year since the last one so I’m still excited.
    • Have discovered most of my penguin bedding has disappeared. I hope it turns up soon.
    • TV Tropes is good to read when not feeling great.
    • Rockhopper penguin chick is called Floof because I say so (and is a big ball of floof). Floof escooped their nest this week, but ran back and hid behind parent when hoomin came.
    • This blog post is late due to payback from shower. It also was posted prematurely as I pressed the wrong button. Twice.

Game stuff

  • Games played – 4
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
  • AC: Pocket Camp Level – 105
  • Godville Heroine Level – 54 (80% done)
  • Godville wood for ark – 25.8%
  • Godville savings – 1 million, 63 thousand
  • Cross stitch completed – 5
  • Most played game – Animal Crossing Pocket Camp (12 hours 11 minutes, average 1 hour 44 minutes a day)
  • Other –
    • Completed Bumblecubes event with a day spare. Having lots of generous friends in game helps a lot.
    • I miss World of Warcraft and other PC games. I hope to be well enough to play them again soon.

Week 22 Review

Danni is lying in bed with a small smile. The image is tinted purple from the light. Johan is much better at taking photos than I am. Purple light isn’t really that great for selfies. I have stolen his t-shirt though, which makes a change from him stealing mine (the hamster and penguin do a fusion dance and turn into a porg lower down the t-shirt image).

Mostly been a sleepy week. It took a couple of days for the side effects from the extra medication to ease off, but it wasn’t too bad. I was up all through Monday night/Tuesday morning but was pretty productive during that time, updating my care instruction book and started work on a series of blog posts I’m hoping to get done soonish.

Tuesday Johan went to Sammie’s to see if we could stabilise her internet connection. Living in the middle of nowhere there isn’t much we could do about the slow speed but swapping from wifi to powerline adapters seems to have help stop it constantly disconnecting. I helped by buying them 😛 Once I did get to sleep I slept through until Wednesday evening, with small enough antinaps they’re not showing on my tracker.

Not listened to much Welcome to Night Vale as Johan wanted to catch up. He’s now ahead of me but only by a couple so hopefully I’ll catch up to him soon. I did listen to part of a Hello Internet episode but they’re too long for me at the moment (and I didn’t find a transcript so other than there being a zoo, penguins and Star Wars involved I don’t really know what was going on).

Other than sleeping, being very sleepy and working on future blog posts and some spreadsheets, it’s been a pretty quiet week. Was a little bit grumpy on Saturday as I felt well enough for a shower for the first time all year, but Johan wasn’t up to giving me one. I had a wipe wash in bed but it’s not the same (and due to various reasons mostly around not coping with care workers, more painful than the shower would have been). I cheered up by the time I filled my diary in though.

Still waiting on my wheelchair being fixed. Johan says the replacement parts have been ordered, but not heard from them yet so will be prodding him to chase them up soon. I’m wanting to have it back for my birthday – though as the last time I was out of bed on my actual birthday was 2011, I’m not sure how realistic using it is then is. I’m hopeful though and don’t have any big events I need to rest for like some other years.

I’ve decided to start tracking my symptom levels along with my mood, as otherwise it’s just a lot of goods which isn’t very informative (other than now knowing I mostly have good days moodwise). Only figured out I could do that this morning though so it won’t be recorded below until next week’s blog post. I’m glad to get it done on time this week.

  • Overall mood – Good
  • Average daily sleep – 10 hours 51 minutes
  • Longest sleep – 24 hours 13 minutes from Tuesday evening to Wednesday evening (deep sleep not recorded due to user error)
  • Clothes changed – 1 (Johan’s penguin + hamster = porg t-shirt, and cat fleece top)
  • Wipe wash – 1
  • Water wash – 0
  • Hair wash – 0, but did get head wiped during the wipe wash
  • Books read – 0 (I need to remind myself I want to finish this book)
  • TV watched – 0
  • YouTube videos watched – 0
  • Streams watched – 0
  • Music listened to – 0
  • Podcasts listened to – Welcome to Night Vale (Episodes 31-32), Hello Internet (part of episode 37)
  • Blog posts written – 1 (though worked on another)
  • Penguins cuddled –  Lots of cuddles 🐧🐧🐧
  • Johan hand holds – Plenty
  • Johan hugs – 0
  • Time on Twitter – 3 hours 33 minutes (average 30 minutes a day)
  • Time on Reddit – 21 hours 13 minutes (average 3 hours 1 minute a day)
  • Time on Facebook – 19 minutes (average 2 minutes a day)
  • Other –
    • Sleeping a lot makes it harder to do stuff. As does being too tired to do much.
    • Definitely think the weather has a big impact on how I feel. When it’s warmer outside I’m in less pain and often feel better overall. If I’m not asleep.
    • My hips are complaining a lot about how much sleep I’m getting. Although the alternating air mattress helps a bit, they still don’t like the pressure after a few hours, and the 90 minutes or so of lying on the other one isn’t a long enough break.

Game stuff

  • Games played – 6
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • DragonVale
    • Neko Atsume
    • Godville
    • Color Puzzle
  • AC: Pocket Camp Level – 103
  • Godville Heroine Level – 54 (38% done)
  • Godville wood for ark – 24.4%
  • Godville savings –  1 million, 9 thousand (yay!)
  • Cross stitch completed – 1
  • Most played game –  Animal Crossing Pocket Camp (12 hours 27 minutes, average 1 hour 46 minutes a day)
  • Other –
    • New Animal Crossing flower event – collecting Bumblecubes (cubed bees)
    • Seems a bit harder to get the rarer bees this time for the first half
    • My to visit list in Animal Crossing has reached 25 people. I know one of them outside the game.
    • Happy to get my first million savings in Godville. Only 29 million left to go 🙂