Goals for 2020

January was a write-off due to getting two colds. Right now I’m full of caffeine and taking advantage of my slightly less drowsiness to write this post.

Most years I make goals for the year to come. Last year I didn’t get around to making them, as I wasn’t doing too well at the beginning of the year. I did make some in 2018, but I can’t remember how well I did with them (other than only showering once). Anyway, the goals.

  • Have at least 2 baths or showers – Last year I managed one bath and no showers. I do need to get in touch with an OT to try and fix the shower chair not working for me problem, but hopefully when I go into respite I’ll have at least one bath and I also have an inflatable one that I just need to figure out the logistics of using (and help the other half be less scared of it :P).
  • Use a toilet or commode – This is staying on the list until I actually manage it πŸ˜›
  • Go out somewhere nice with Sammie – Last year we went to watch the Great North Run and to the cinema, and it’s great having a teenager who wants to spend time with her parents, so hopefully we’ll do something nice. One of her birthday presents is outings this year, though we’re still working out the details.
  • Keep up with Daylio (my diary) – This is really useful for keeping track of what I’ve done when, and is why I know I had one bath and no showers last year (and that the bath was in April). At the beginning of January I also added tracking my cognitive/pain/sensory and physical symptoms seperately, as sometimes I can be doing great with light and noise but be unable to move. Right now, I’m doing okay for cognitive (which is how I’m writing this), good for sensory, but pain is high and moving makes me feel horrendous. It’ll be interesting to see how much my mood is related to my symptoms, but to know that I need to keep it up to date.
  • Make progress on my Stuff that Helps series – Still thinking of a better name for it, but I’m hoping to take less than 18 months for the next post. I have the list of items ready, just need to describe how they’re useful.
  • Sort out my Twitter – I follow too many people, and can’t keep up with my timeline even though I spend quite a bit of time on there. This year I want to go through and unfollow some and put those remaining in lists so I have some chance of keeping up. To do this I need to get over the guilt I feel when I unfollow people who are awesome but aren’t ideal for me to follow.
  • Get my room more organised – this one is going to take some help, as I can’t do much, but I’d like my room to be sorted. A good start would be getting my clothes in my chest of drawers. I’d also like the wrappers removed from my rainbow roses.
  • Read 20 books – I managed this last year, and I’m hoping to do so again this year. My main problem is choosing what to read.

That is enough to be getting on with. I’m also hoping to get on my computer and play more World of Warcraft, but that is very health dependent. I also want to make a list of films and TV shows I want to watch now that I’m able to do so. Hopefully I’ll stop getting colds so I can get back to where I was in December and doing stuff πŸ™‚

Day 20 – Cuddles

Tuesday night I decided I wanted an alcoholic drink. I’m lucky in that I don’t have alcohol intolerance any more, and alcohol reduces my pain, anxiety and muscle spasms. If I didn’t have a family history of alcoholism and didn’t have to stop my painkillers to drink I might have it more often, but I keep it as an occasional treat. I also get quite giggly and it’s a bit harder to judge if I’m overdoing it.

Being in less pain meant I could cope more with touch, and I ended up having lots of cuddles with Johan. Since I’m normally in too much pain for even a short hug, this was very much wanted. Not being able to have hugs very often is one of the hardest parts of being this ill.

I ended up sleeping most of Wednesday, only waking up when my digestive system did. Which is fine when there’s someone here, not so much when I have to wait 90 minutes for someone to come help me. Being incontinent sucks sometimes.

Using a toilet again is one of the goals I’ve had on my list for several years now but I’ve yet to manage it. Silly body not liking being upright and incontinence meaning I don’t get enough warning to use the shower chair as a commode.

Otherwise sleep is good. Not being able to choose the times of it sucks a bit, and I feel horrendous when I wake up, but not sleeping means less cope and more worse symptoms. It did mean this blog post was late but I don’t mind that.

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. 🐧

Goals for 2018

Last year I decided to make some goals for the year. It’s time to make some new ones, but first to see how I did with the ones from last year.

  • Have a shower at least once every 2 months – This didn’t happen. I think I managed one shower all year. A mixture of reasons, but mostly not being well enough.
  • Use the toilet/commode – Still not managed this. I’m hopeful for this year though.
  • Go out with Sammie somewhere – Partial win. I went to see her school play, though she didn’t know I was there until after. Worth it though.
  • Create and keep to a rough daily routine – One I managed! I have it set up in Habitica. Most days I manage everything on it, and it has helped my anxiety quite a lot. I might blog about it sometime.
  • Read at least 20 books – I was doing well with this until I went into the care home, then I took 5 months to read 1 book. I think I ended on 15 (Goodreads counted one of them twice for some reason). Could be worse.
  • Sort out my clothes – This hasn’t happened yet, but I’ve bought some vacuum bags and a pump and the cleaner comes 2 hours a week now, so hopefully it’ll get done this year.
  • Sort out our letters – Complete fail. I have folders, just need to be well enough to do it, which hasn’t happened yet.
  • Spend more time in the living room – I think I managed this, though it’s hard to tell as it’s been a few months. New day bed is awesome though.
  • Sort out computer stuff – Partial win. I haven’t sorted out the blog much, but I’ve made progress on organising important files and my photos.
  • Go out with Johan somewhere that isn’t shopping or for a meal – Win! We saw Sammie’s school play together.
  • Create a guide to looking after me – Almost done. Only thing I need to add is where things are kept, and since I can’t do that bit without help I’m thinking of just printing what I have and finishing it when I can. It’s already been useful.

Of the 11 goals I had, I completed 3, partially completed 3 more, and failed 5. Could be worse.

New goals for this year:

  • Shower at least twice – as every two months was too optimistic, I’ll reduce it to double last year. Any extras will be a bonus.
  • Use the toilet or commode – I’ll keep adding this until it happens πŸ˜›
  • Go somewhere with Johan that isn’t shopping or a meal – I like this one so am repeating it. Hopefully I’ll manage something more pleasant than my PIP tribunal, but just in case I’m not well enough for something else I won’t exclude it.
  • Read at least 20 books – I’m just about able to read again now, so I’m hoping to manage it this time. Hopefully there won’t be a repeat of the care home situation that really broke my brain for months.
  • Spend quality time with Sammie in person – she’s my favourite person, so even if I’m stuck in bed I want to spend time with her. Hopefully it’ll be somewhere out though.
  • Watch a film – I didn’t manage any films in 2017, so I’m hoping to fix that this year.
  • Sort out my blog – I’m wanting to update my blog roll, work on categories and tags, and maybe even change the theme. Luckily I can do this from bed.
  • Track my daily activities – I’ve found a couple of apps to help me with this, and I’ve managed so far this year. This is mostly so I can see when I’m doing things like having a wash or getting out of bed so I can prioritise what I need to do when I’ve got the energy for it.
  • Blog every week – ambitious, but I’m creating a template that means if I’m really ill I just need to answer the questions, and I can use my daily tracker for the answers. I use my blog to remember when things happened and that’ll be much easier if I’m posting regularly.
  • Take a selfie or have a photo taken every week – I am trying to feel better about myself and how I look, and hopefully this will help. I can use it for my weekly blog post, too.
  • Try not to feel guilty when avoiding bad news I can’t change – there’s a lot of bad news at the moment, and some of it makes me very anxious. When there’s something I can do about it, I want to do so, but it helps no one if I’m worrying about things I can’t influence. I’ve gotten better at not reading the news when I’m not able to cope with it, but I need to work on feeling guilty about it.

I think that works. I’m still going to try and organise my clothes, the letters and other stuff, but as I need a lot of help from other people I’ll count them as bonuses if I manage them.