Day 11 – World of Warcraft

It seems I really needed that sleep. Once I woke up this morning (from a nightmare which wasn’t ideal) I was feeling much more like myself. Still full of cold but otherwise mostly at my normal level of functioning.

Since I was awake and kinda with it for once, I decided to go on my computer while Johan was at his volunteering. First was finishing reinstalling all the programs after the reformat last time I was on, and then I went into World of Warcraft.

In WoW at the moment there’s a 15th anniversary event going on. There’s some fun things included like revisiting old raids and fireworks, but most importantly for me is a 15% buff to reputation until January. To be able to fly in the newer areas you need to get revered (second highest) reputation with several factions, including two newer ones. I’d done all the older ones, but still had those two to do. I was able to get one of them to revered today so I’ve only got the last one now. Unfortunately my Rustbolt Resistance rep is only at friendly even after doing all the dailies I could today, so as I need to get through honoured as well it’s probably going to take a while until I’m able to fly. I did have fun with a jet pack in the Mechagon zone though.

The other advantage of being on my computer is that it’s so much easier to sort things out. I was able to get my emails sorted, buy various items that were in my baskets, and finish moving over from Chrome to Firefox. I was also able to go on video chat with Sammie for a while, which was awesome.

There was a lot of noise from the flat upstairs this morning. Banging, drilling and loud voices mostly, though at one point my lightshade was moving so whatever they were doing was vibrating the ceiling. I’m not sure if it was the council, their contractors or a new tenant moving in. Johan checked outside but the only van out there was a stairlift one, and they weren’t fitting a stairlift. I’m glad I had my noise cancelling headphones or there’s no way I’d have coped, and going on puter wouldn’t have happened.

I also changed my top today. I got a new one last week, so I’m wearing that. It says “Protect Earth – Penguins Live Here” and has a very cute penguin picture on it. I had to tell Johan not to pinch it until I’d worn it as he likes it as well πŸ™‚

Tomorrow I think I’m having my flu jab. No idea when that’ll be, but I’m hoping it’s a nice nurse. I know it’s not going to be the awesome practice nurse that did Johan’s as she couldn’t come on a Tuesday πŸ™ I’m a bit nervous but since flu was what triggered my ME I really don’t want to get it again. Having a cold is bad enough.

Day 5 – Nicky and Isabella

Optician’s appointment took it out of me, so I’m not going out today and will probably be sleeping soon. I’m having a Greggs vegan sausage roll for tea as I’ve been wanting to try it for a while. It’s really nice and I’ll probably get them again.

One of carers burnt a hole in Nicky’s body, so I needed to get a replacement. Grey is no longer an option, so I went for marshmallow pink, which is pretty much lilac so I’m happy. So is Nicky. Isabella is slightly jealous but she’s called that because grey adult penguins usually have isabellinism. They’re my main bed heaty penguins so I’m glad to have them.

Nicky, a very fluffy lilac and white penguin soft toy with pink sparkly beak and feet. Behind them is Isabella, a less fluffy grey and white penguin with an orange beak and feet.
Nicky and Isabella

2018 In Review

Later than usual as I overdid it over Christmas and New Year, then caught a cold so blogging just wasn’t happening. The overdoing it was worth it, the cold not so much. February is the same as January, yes? πŸ˜›

Since I started this blog, I’ve done an end of year survey. Time to update it for 2018 πŸ™‚

1. What did you do in 2018 that you’d never done before?
Get properly fitted for a wheelchair πŸ˜› Won a tribunal. I also went for a meal with Sammie, and met some of the Running Ninjas.

2. Did you keep your New Year’s Goals, and will you make more for next year? 
Some of them. I do have goals for this year but I’m not sure when I’ll be blogging them.

3. Did anyone close to you give birth?
My sister Meggy had a baby, so I have a new nephew! He’s very cute.

4. Did anyone close to you die?
No one super close, but a few people I was friendly with and a couple I wish I had been.

5. Where did you visit?
Local court for PIP tribunal in February (in the snow- getting onto the ramp towards our flat was interesting as we had no grip). Went into Gateshead/Newcastle in April and November, the second time Sammie joined us. Went into the care home in July, watched fireworks in the local park just before Guy Fawkes night, and went to Gateshead Parkrun in December.

6. What would you like to have in 2019 that you lacked in 2018? 
More time out of bed. Better health πŸ˜›

7. What will you most remember from 2018 and why? 
New nephew being born (because that doesn’t happen every year). Getting my new wheelchair, which hopefully will mean more freedom once my body starts behaving.

8. What was your biggest achievement of the year? 
Winning the PIP tribunal. It was a bit ridiculous it got to that stage, but I managed to answer all the questions and we got the result we wanted. Finally getting my wheelchair assessment sorted and a wheelchair that fits was also great.

9. What was your biggest failure? 
Only managing one shower all year. I think we might need to tell the OT that shower chair really isn’t suitable for me, as even adding extra cushions and straps and such doesn’t help enough.

I also ended up not completing the weekly blog posts, but that was because my brain just gave up after going out and then getting multiple colds.

10. Did you suffer any new illness or injury?
Apart from catching colds, I had a lot more migraines than I’ve had previously. Might need to mention it to the doctor as it is interfering with stuff. I also did something to my left hip in September and now I can’t straighten that leg properly and it often wakes me up with pain, which isn’t great. I was hoping it would get better by itself.

11. What was the best thing someone gave you?
Cuddles from Sammie and Johan πŸ™‚

Bilbo Bbox was pretty awesome as well.

12. Who impressed you this year?
Johan continued to make a ton of progress with his running and volunteering. Sammie continued being caring, thoughtful and awesome. Everyone who survived another pretty terrible year.

13. What made you appalled and/or depressed?
Politics. Responses to politics. TERFs. Bigots. DWP. People hurting my friends.

14. Other than food, bills and disability stuff, where did most of your money go?
Probably presents for Sammie and Johan. Every year I say I’m going to spend less, and every year I fail πŸ˜›

I also upped my Patreon donations after getting my PIP sorted, and bought a Switch that Johan mostly uses as the controls are too hard for me.

15. What did you get really, really, really excited about?
Sammie! Seeing friends! Bridges! Trains! Penguins!

16. What big events will you remember most from 2018? 
My nephew being born. Meeting the Ninjas. Getting my new wheelchair.

17. Compared to this time last year, are you:
a) happier or sadder?
Probably the same.
b) healthier or more ill?
Physically I’m doing better, cognitively I’m doing worse. I can hold my own head up again and it takes longer to faint when sitting more upright, but I end up super frustrated trying to navigate shopping websites as I can’t figure them out.
c) richer or poorer?
Richer. Got PIP sorted out and got a large back payment with it. It helped.

18. What do you wish you’d done more of?
Everything except sleeping πŸ˜› Mostly talking to friends and family, as that got much harder as my brain started playing up.

19. What do you wish you’d done less of?
Sleeping (though more wishing I needed less of it). Panicking. Feeling ill. Hearing things (like the doorbell and the phone) that aren’t actually making noise.

20. How did you spend Christmas?
Being spoilt and eating yummy food while watching stuff on telly πŸ™‚ Johan made roast pork this year, and his roast potatoes were even better than previously. It was awesome.

Didn’t get as many decorations up as I wanted though. Johan broke a foot from the Christmas tree and lost another so that didn’t go up, and although I had tinsel I didn’t get to put any up other than on my bed rails. We did have a Christmas penguin on our flat door though (at least I was told there was- Johan wouldn’t take a photo to prove it :P).

21. What did you love in 2018?
Other than Johan, Sammie, and family, I think following awesome people (and animals) on Twitter. Bilbo and @IamMrJ’s ratties get special mention πŸ™‚

22. How many trips out?
One trip to court for the PIP tribunal, two trips going to and from the care home, one trip around the corner to vote (which broke my wheelchair) and four fun trips, so eight in total. Could be worse πŸ™‚

23. What was your favourite TV programme?
Steven Universe again. It’s awesome. I got completely caught up (until the new episodes came out in December which I’ve yet to see). I also really enjoyed Doctor Who, though I’ve got a few episodes to catch up on.

24. Do you dislike anyone or anything now that you didn’t dislike this time last year?
Not really. I try to avoid people who act badly and hurt people.

25. What was the best book you read?
Burn the Ashes by Heather Shahan. Young adult dystopia without a love triangle! I loved the idea of the Talists, and Peony burying who she was felt painfully familiar to me. I’m also happy there were diverse characters without making it a big deal. I’ve also read the sequel Rush of Blood, but that’s for 2019’s list πŸ™‚

26. What was your greatest media discovery?
I figured out how to listen to podcasts! Because of how my brain works, I need to do something else that doesn’t involve language while listening, so I either play Animal Crossing Pocket Camp or I do virtual cross stitch. I mostly listened to Welcome to Night Vale, and read the transcripts afterwards to understand everything I missed while listening (as reading is still easier than listening).

I also started watching Jessica Kellgren-Fozard on YouTube. Though I was initially put off a little bit by her received pronunciation (I be working class) she’s awesome, disabled, and very, very gay.

27. What did you want and get?
Bilbo Bbox! Awesome Bilbo, disability, trans and penguin related tops and stuff! I also got to meet the Running Ninjas, received my new wheelchair, and took Sammie out to dinner. I also won my PIP tribunal.

28. What did you want and not get?
More showers. To watch the Great North Run in person with Sammie (one of the carers didn’t turn up so had to watch it in bed). To go in the living room more (Johan put stuff on the day bed). Johan never did buy me flowers – I ended having to buy them myself.

29. What was your favourite film of this year?
Deadpool. It was really funny. I’m glad Johan was able to watch it with me.

30. What did you do on your birthday?
Opened cards and presents, watched some footy on telly, and spoke to Sammie on video chat. Was a good day πŸ™‚

31. What one thing would have made your year immeasurably more satisfying?
Not having payback whenever I do anything requiring slightly more effort than normal πŸ˜›

32. How would you describe your personal fashion concept in 2018?
T-shirts with penguins, Bilbo or cool writings on them. Open back fleecy pyjama tops. Mostly purple.

Going out, add a purple shiny mermaid tail.

33. What kept you sane?
Penguins, Johan, and Sammie. Distractions like Twitter helped, as did chocolate (I believe it makes me feel better, so thanks to the placebo effect it does).

34. Which celebrity/public figure did you fancy the most?
Jessica Kellgren-Fozard. She’s gorgeous (and very monogamous, married, and gay).

35. What political issue stirred you the most?
We still don’t know what’s going to happen when Brexit happens. And the DWP continue making vulnerable peoples’ lives hell.

36. Who do you miss?
Everyone I’ve not been able to keep up with. It’s probably the hardest part of being ill.

37. Who was the best new person you met?
I’ve spoken a few times to one of Sammie’s friends. He’s awesome. I hope to meet him (and Sammie’s other friends) in real life at some point.

38. What was the best thing you ate?
Christmas dinner, especially the potatoes. Roast potatoes for my birthday please, Johan πŸ˜›

39. Tell us a valuable life lesson you learned in 2018?
It’s not worth engaging with those who don’t want you to exist.

40. A quote that sums up your year:
Penguins are good. I like penguins. 🐧

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 πŸ˜› 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 πŸ™‚ 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 Β£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.