Category: Penguins!

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.

(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.

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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.