Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

NaBloPoMo 2019 – Day 1

2019, Danni, NaBloPoMo, Real Life

There used to be a month long blogging challenge to post a blog post every day in November called NaBloPoMo (National Blog Posting Month). It was the blogging version of NaNoWriMo (National Novel Writing Month). There’s no longer a main site for it, but I used to find it useful for getting back into the habit of blogging regularly. This post is for day 1.

My plan is to attempt it for 2019, as I miss blogging but haven’t known what to blog about. To allow for the fact I’m ill (and sometimes sleeping 18+ hours a day) I’m gonna be lenient with the timings (so long as it’s that day somewhere in the world I’ll count it) and I’m going to try and write a couple of posts in advance (like this one). I’ve got a couple of topics I know I want to write about, and I’ll be looking for blog memes I can use for when my brain isn’t working great. Worst case scenario, I’ll be posting a picture of a penguin or a favourite YouTube video 😛

I never did finish off my end of year blog posts, but that’s okay. I can do them next time. I’m hoping that getting back into the routine of blogging will help me process my thoughts and also work as a kind of diary as I have a terrible memory and I can’t remember what I’ve done. I’ve used my blog several times so far this year to figure out when things happened or I did certain stuff.

A more detailed summary of what I’ve been up to and how I am will be in one of the month’s blog posts, but I can say that overall I’ve been about the same. Still mostly in bed, enjoying the times I can get out of it, and glad I’m nowhere near my worst. I’ll take it 🙂

Danni

Severe ME Day 2019 – What I Miss

Danni, M.E., Physical Disability, Real Life

The 8th of August is Severe ME Day. Last year I wrote about how it affects me, and other than struggling more with communication it’s not changed much.

I’m one of the lucky ones – I have the support I need, and I’ve massively improved from my worst where I spent a lot of time paralysed, had to be flat almost constantly and couldn’t tolerate much light, sound or touch. Eating was such a struggle I ended up underweight. Some people are like that, or worse, everyday. Some people with Severe ME die.

Now I can be propped up, watch easy television and videos, listen to podcasts if they have a transcript I can read (or don’t require concentration), and have lots of hand holds with Johan. On good days I can have hugs, be hoisted into my wheelchair or be washed. Once a month or so I can go out on adventures so long as they’re close by. I’m happy to have improved, but I still miss a lot of things.

These are some of the main things that I miss:

  • Special events. I’ve missed multiple weddings, a couple of funerals and a lot of Sammie’s special days over the years. Not being able to be there for people hurts.
  • Talking to friends and family. Other than Johan, my care workers and, to a lesser extent, Sammie, I don’t talk to people much. Communicating is now one of the hardest things to do, as it takes up a lot of my energy and I often forget to respond. This is probably also related to also being autistic.
  • Seeing friends and family. Even when I try to make plans for friends to visit or to meet up locally, there’s no guarentee I’ll be well enough on that day. Having to cancel seeing friends is one of the hardest things about having a fluctuating illness.
  • Being independant. I tolerate having other people help me with washing, dressing, toileting, teeth brushing, moving and other stuff, but I really want to do them myself. Sometimes I’ll do things by myself even though I know it’ll cause payback afterwards.
  • Getting washed/changing clothes frequently. Touch is incredibly painful for me, so I can only tolerate getting my body washed (even with wipes) or changing my top on my good days, which is roughly once a week. Hair washing is even less frequent (5 times so far this year), which is why I get it shaved off when I’m able to get to the barbers.
  • Hugs. I love hugs, but they’re really painful and cause payback. Sometimes that’s worth it, but it means I can’t have them as much as I would like.
  • Independant mobility. I don’t really miss being able to walk (possibly as it was painful even before I got ME), but I do miss being able to get around by myself, either by crawling or self propelling a wheelchair. My current wheelchair requires someone else to push it, and I’m not currently well enough to use a powerchair.
  • Tidying/cleaning/organising. Johan is not good at this. I wasn’t great at it, but I was better than he was. I now need to rely on other people to sort out my room (or the rest of the flat), and though we have a cleaner who helps, it’s not how I’d like it. I don’t have the energy to direct other people in how I want it done.
  • Feed myself soup with bread. I’m very stubborn especially when it comes to eating, and will feed myself unless I absolutely can’t. I can’t manage cutlery properly so if I have soup I need it in a Sucup (special cup with lid and thick straw) which means I can’t dip my bread in it.

I’m very lucky to be able to do what I am. Today I’m thinking of all those with Severe ME who are unable to do things I enjoy, and the family and friends of those who have died to this illness or its complications. It sucks.

Danni

Still Alive

Danni, Gaming, M.E., Physical Disability, Real Life

So doing monthly reviews didn’t happen, and I’ve still not even finished all my end of year posts. Mostly because although I was doing better with physical stuff and things like watching telly and listening to podcasts, actually posting things (here and in places like Twitter and Facebook) was really hard for some reason.

My new wheelchair continues to be awesome. I went on an adventure in February, which included rejoining the library so I could access ebooks, getting my head shaved at the barbers again, and trying out a new restaurant with Johan. I technically was well enough to go out again in March, but Johan had planned to go running three nights in a row in the middle of nowhere so I had to save my energy for going into respite.

Respite went about as well as it could. A couple of issues but they were sorted quickly and we’ve got some ideas for improving it next time. The main issue was the noise, which unfortunately there isn’t much that can be done. I wore ear plugs continuously and occasionally added my ear defenders as well, but I could still hear all the call buttons and yelling (as most of the residents are deaf, not because anyone was angry) even with my door shut. The problem with it being a good care home is there aren’t exactly many spare rooms so they have to put me where they can, and the nursing floor has the call buzzers going off for all floors (and I’m down for nursing care for some reason :P). I also had a bath while there which was awesome 🙂

The first weekend while I was in respite Johan did the Dark Skies Kielder Triple, where he came fourth (and in the double). That was a 10 mile race the first night, a 26.5 mile “marathon” the second night, and a 14 mile “half marathon” the third night. The triple is doing all of them, the double is dropping the 10 mile race. He really enjoyed it and luckily on the last night it was clear enough for him to see the stars, which he said was amazing as Kielder has very little light pollution. I’m really proud of him for managing it all and doing so well.

When he got home he visited me (and enjoyed not having to be carer for a bit) and also rode on trains to various places in northern England, including Carlisle and visiting his parents in Leeds. The weekend after he was in London for QuickCade, a speedrunning marathon. I managed to watch his run of Chiki Chiki boys, but wasn’t really well enough to watch more. I had hoped to catch up on some TV shows and such while in respite, but the noise and changes to my usual routine meant I wasn’t coping as well as I hoped.

Coming home was fun, especially as I wasn’t really well enough to travel, but being back in my own, quiet bed was amazing. Johan says that pushing me up the hill from the care home to our flat is harder work than doing the Kielder triple 😛

Since then I’ve mostly been resting. I gave up mindlessly browsing Reddit for Lent, which has been a little hard at times but meant I have had time for other stuff, mostly reading TV Tropes. I’ve managed reading a few books which I’m happy about. Yesterday was the first day I felt kinda with it again since getting home, and today I’ve been well enough to go on my computer where I’ve sorted some stuff out and managed to play a bit of World of Warcraft.

Sammie introduced me to Happy Colour, which is a colouring app where you don’t need to choose the colours so great for me when I’m not doing so well. It’s pretty much replaced the cross stitch app for now. I’ve also stopped playing Animal Crossing Pocket Camp as the constant events meant I felt overwhelmed, and they introduced new features that pushed the fortune cookies (loot boxes) even harder. I’m still playing Godville and Neko Atsume, and I’ve started Lost Island and restarted Gardenscapes as well.

I’m hoping that now I’m over the worst of the payback from going into the care home I’ll be able to do more again. I was well enough to get out of bed today but Johan had other plans already so I’ve gone on my desktop computer instead. The next respite will be the end of June when Johan runs the St Cuthbert’s 45 mile ultramarathon, so plenty of time to do things before then 🙂

Danni

2018 In Review

Danni, Goals, M.E., Penguins!, Physical Disability, Real Life

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? 😛

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

1. What did you do in 2018 that you’d never done before?
Get properly fitted for a wheelchair 😛 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 😛

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 🙂

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 😛

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 😛 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 🙂 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 🙂

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 🙂

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 🙂

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 🙂

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 😛

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 😛

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. 🐧

Danni

Merry Christmas!

Danni, M.E., Penguins!, Physical Disability, Real Life

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.