Author: Danni

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

New Years Resolutions and Goals for 2015

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

Now is the time I make my resolutions and goals for the year. First of all though I look at last year’s resolutions and see how I did.

 

  1. Have a bath or a shower. – I managed this one! While I was in the care home in June I had a bath, and felt much cleaner afterwards. Definitely a success.
  2. Sort out health book/care plan. This one I didn’t manage completely. I got the most important bit done, a care sheet for the home care workers I have, but I’ve not done the full health book yet. I think I’ll be continuing this one.
  3. Be kind to others. I asked Johan, and he said I was kind to others. I also feel I was a lot less snappy at people last year, so I think this one was a success.
  4. Be kind to myself. I think I’m doing better on this one. It’s always going to be harder than being kind to others, but I think there was improvement here.

Not too bad overall. I also had a few goals- getting an iPad (I changed my mind on this one, as I now have a decent text to speech app for Android), trying to blog once a month (didn’t manage in September due to being ill), and getting out of bed again, which I did do a few times but nowhere near as much as I’d have liked. I had a Goodreads goal to read 50 books, of which I managed 46 I think (I can’t be sure as I can’t figure out how to see my own past challenges on Goodreads). That’s not too bad and I’m hoping to manage it this year. One goal I did manage to complete though was NaBloPoMo in November, which made me happy 🙂

So, resolutions for this year:

  1. Go to the toilet. This one might sound strange, but I’ve not been on a proper toilet for years. I’m doubly incontinent, but sometimes I can control things a bit. I would really like to go on an actual toilet at some point this year.
  2. Sort out getting the flat sorted. I’m not sure how this one is going to work yet, but it needs doing. If my bedroom, the hallway and the living room are all properly accessible to me in my wheelchair without having to move stuff around, then that will be a good indicator that the flat is getting sorted.
  3. Improve my eating. I’m not gaining weight and I need to. I’m also low on several vitamins and minerals. This one isn’t going to be easy, but I’m hoping that being referred back to the dietician and having more help from the carers when it comes to mealtimes this should be doable. Bonus points if Johan’s eating improves as well 🙂
  4. Finish the health book. I’ve now added this to HabitRPG so I have a daily reminder I need to do this. I’ve also got a working printer, and I’ve bought the last bit of stationery I need so I’m going to really give this a go.

All of them require help from other people, which will make things interesting. The one I can do mostly by myself is the health book, as I can type the pages on here and only need someone to fetch the printouts, the folder and the page protectors for me. I’m also making some goals (all except the reading one I’ve added to HabitRPG to make it easier to remember):

  • Read 50 books. I’ve been well enough to read now for a while, which is awesome. My Kindle Paperwhite makes it easy for me. If I manage this goal, I’ll reward myself with a new Kindle (the new version will make it even easier for me to turn the pages as I just touch the sides rather than the page bit itself).
  • Buy the daybed. Esther will feel loads better if she can sleep on something other than our old sofa. I’ll be able to go into the living room more. Win win. Just need to sort out collection of the old sofa (and the broken wheelchair, old bed frame and several boxes of junk) and actually buy it. I have found one I prefer to the Ikea one on eBay from a few different sellers, so that means I can buy it myself.
  • Get my pictures and posters on the wall. I’ve been wanting to get this done since I moved in, and it hasn’t happened yet. This year I intend to fix that. There’s a lot of them though so it’ll have to be done in bits 😛
  • Play some of the games I already own but haven’t yet tried. I’ve got loads of games that look good on Steam and from Humble Bundles. I know I have limited and inconsistent time on the computer, but I’d like to try at least 5, more if I can. Some of them are for my tablet as well so I can try them even when I’m not on my computer.
  • Catch up with Doctor Who and My Little Pony. Very dependent on being well enough to watch television, but I’m hoping I can manage this.

Lots of things to be getting on with. If my health improves I obviously want to be getting out of bed more, but though it’s better than it was this time last year I know it can be very up and down. Three main symptoms are keeping me in bed- dizziness (which turns into fainting if I’m upright too long), muscle weakness, and muscle spasms (which have improved since I stopped pushing myself too much but still are a daily occurrence). Oversensitivity to everything (well, not everything but it feels like it at times) would need to improve for me to go further than the living room or the ramp outside, as the noise, light, smells and movement are too much otherwise. I’m hopeful though, and maybe seeing Professor Julia Newton will give me some answers.

 

Danni

2014 In Review

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

A bit later than usual, but I enjoy doing this each year 🙂

1. What did you do in 2014 that you’d never done before?
I was hoisted into bath for the first time while in a care home 🙂 Less never done before and more not done for a while, I managed to stand up and take three steps with my zimmer frame one day I had a lot less dizziness than normal 🙂

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I managed 3 and a bit. That’s not too bad going. I’ve got some new ones for this year I’ll be blogging about 🙁

3. Did anyone close to you give birth?
Yes! A few friends gave birth during 2014 🙂

4. Did anyone close to you die?
No-one I was very close to died, but two friends from twitter did unexpectedly 🙁

5. What countries did you visit?
I went all way across the river Tyne to Newcastle for a hospital appointment! It was a massive adventure 😛

6. What would you like to have in 2015 that you lacked in 2014?
Still want that hoist and shower chair 😛 The ability to go out without needing a stretcher would be nice.

7. What dates from 2014 will remain etched upon your memory, and why?
I saw Sammie three times! I can’t remember the exact date of the first two visits (silly memory) but the second was on Christmas Eve so I think I’ll be able to remember that. Speaking to her on Christmas Day and her birthday was awesome too 🙂

8. What was your biggest achievement of the year?
Standing up and walking three steps on the one good day I had all year 😛

9. What was your biggest failure?
My health again.

10. Did you suffer illness or injury?
On top normal bedbound ME stuff, I had a pressure sore on my ear that took three months to disappear. That wasn’t fun.

11. What was the best thing someone bought you?
Everything that people bought me was amazing 🙂 My favourite present (after seeing Sammie) was a purple penguin ornament she made me for Christmas 😀

12. Whose behaviour merited celebration?
Johan was amazing as always. Sammie dealt with a difficult issue in a very mature way and I’m so proud of her for it.

13. Whose behaviour made you appalled and/or depressed?
The government trying to screw the lives of sick, disabled and poor people even more than they already have.

14. Where did most of your money go?
Food, bills, disability stuff. Being an adult sucks in some ways.

15. What did you get really, really, really excited about?
Sammie :) Talking to Sammie was amazing. Seeing Sammie was amazing. She is an amazing person. (Yes, this is a repeat from last year. Still true.) I also got excited about penguins 😀

16. What songs will always remind of 2014?
Spread the Hope. You can listen to it or buy it: http://spreadthehope.christmas/. It’s for four good charities to help sick children 🙂

17. Compared to this time last year, are you:
a) happier or sadder?
Happier. Spoke to Sammie loads!
b) fatter or skinnier?
A bit skinnier. This gaining weight business isn’t going so well.
c) richer or poorer?
Hard to tell. Johan got PIP but that’s his income rather than mine.

18. What do you wish you’d done more of?
Having good days 😛

19. What do you wish you’d done less of?
Relapsing. Getting pressure sores.

20. How do you plan to spend Christmas?
I spent most of Christmas talking to Sammie. Johan was the one sleeping all day 😛 I had a lovely dinner made by Esther and opened presents and it was good 😀

21. Did you fall in love in 2014?
I got more penguins I loved 😛 I still very much love Johan and Sammie 🙂

22. How many one night stands?
None. I had a 10 second stand 😛

23. What was your favourite TV programme?
Doctor Who and Great British Bake Off 🙂

24. Do you hate anyone now that you didn’t hate this time last year?
Still don’t hate anyone. I try to dislike actions rather than people. Like the actions of the government.

25. What was the best book you read?
Hyperbole and a Half by Allie Brosh 🙂

26. What was your greatest musical discovery?
Why so many questions on music? I need to get well enough to listen to some.

27. What did you want and get?
Lots of contact with Sammie 🙂 I saw her three times and spoke to her loads on Skype (whenever I was well enough to go on the computer during the day, pretty much). I also got a new, bigger telly so I can see things on it properly 🙂

28. What did you want and not get?
My health to improve, and a hoist so I could get out of bed. (Same as last year then. That hoist would be really helpful…)

29. What was your favourite film of this year?
Despicable Me! Frozen was also good, and I liked Divergent (I think they’re the only films I actually watched, at least all the way through).

30. What did you do on your birthday?
Mostly slept. I got a McDonalds for tea, some awesome presents and Sammie sang to me on Skype, so it was a good day even though I was ill 🙂

31. What one thing would have made your year immeasurably more satisfying?
Being able to get out of bed and my health improving. I was still very happy though.

32. How would you describe your personal fashion concept in 2014?
Penguins and pyjamas. Sometimes even penguin pyjamas 😛

33. What kept you sane?
Penguins, Johan, Sammie and friends 🙂

34. Which celebrity/public figure did you fancy the most?
I didn’t get any new crushes.

35. What political issue stirred you the most?
Welfare reform stuff again. All the different ways the government is screwing over poor and/or disabled people.

36. Who do you miss?
Sammie (though the extra contact makes it easier) and my friends and family.

37. Who was the best new person you met?
I met Sue, a friend from Twitter!

38. What was the best thing you ate?
Hard one. The pork pie from French Oven, the festive dinner at Christmas and the birthday McDonalds are all up there (I’m not a sophisticated eater at all 😛 ).

39. Tell us a valuable life lesson you learned in 2014?
Don’t get near a horny seal if you’re a penguin.

40. Quote a song lyric that sums up your year:
If you’re happy and you know it, flap your hands 😀

Danni

Merry Christmas!

Autism, Computers, Danni, Gaming, M.E., Minecraft, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life

To all my readers and friends, Merry Christmas! Or if you celebrate something else or nothing at all, I hope you have a wonderful day!

I’ve had an awesome Christmas so far. Yesterday Sammie came over for a bit to pick up her presents, which meant real life hugs and squishes were had 😀 Best present ever!

Today I’ve been completely spoilt with masses of presents, from lots of family and friends. I’ve been unable to get all mine to others sorted in time for Christmas this year, but I’m hoping to get those I’ve missed within the next week or two. My favourite was a gift from Sammie- she made a ornament of us two as penguins, me being purple and her being pink, hugging each other. Me being a purple penguin and her being a pink penguin has been our thing now for many years, so it means a lot to me. She also got me new penguin bedding and a matching cushion which are super cute 😀

Johan had bought me a telly for Christmas a few months ago, but surprised me with a Pingu ball (Hafu Pingu rather than telly Pingu), and Rarity, Rainbow Dash, Fluttershy and Twilight Sparkle soft toys. My sister Meggy had visited a few days ago and she gave me an amazing super soft penguin which I love to stroke. My other sister Becca gave me some awesome penguin pyjamas and penguin stickers. Esther gave me some penguin fuzzy socks (I love fuzzy socks!) and an awesome penguin Christmas jumper. Other presents included penguin stationery, a loom band penguin and money/gift cards. Very very spoilt Danni 😀

I also saw my brother on Christmas Eve, which was a lovely surprise. I’ve spent most of the day on Skype with Sammie, sometimes playing Minecraft (with her and her friend), sometimes just talking. I’m so grateful that I’m well enough to speak to her, be on my computer, listen to a few Christmas carols and songs and hopefully later have Christmas dinner. I even managed to speak to my mum-in-law on the phone for a minute. Now is time to rest and hopefully I’ll continue to have a good day 😀

Danni

How Can I Deal With Frustration?

Autism, Danni, M.E., Mental Health, Physical Disability, Real Life

I’m frustrated. Mostly because of illness/disability stuff. And I don’t know how to deal with it. There are various things I’m frustrated about, but I don’t know how to deal with them without making myself more ill (I can explain the basics okay but going into the details is so draining I can’t just ask someone else to help). The frustration isn’t helping.

The kitchen is a pigsty. Again. I tried to investigate cleaners but I’m not up to contacting them and explaining everything that would need to be explained. The carers are limited in what they can do, and it’s back to the point they basically can’t do anything. Johan can’t do it due to executive functioning issues, and can’t ask anyone else to do it (or let me ask someone else to do it if I have a good day) due to anxiety issues. Esther has similar executive functioning issues to Johan and it isn’t fair to expect her to do it all anyway. So I’m stuck. I’m sure nice people would offer to call people for me but it took me 2 years to get a 2 page document to give to the carers written and printed so it’s highly unlikely I’ll be able to provide them with the information they need anytime soon. I want to just go in there and do it myself but that’s impossible from bed.

My bedroom needs tidying. I don’t have enough storage space for everything in here. Now I can ask the carers to help with this, but at the moment when they come I’m either asleep or feeling horrendous, and I don’t feel well enough to cope with the movement/noise until after 10pm. I might need to just suck it up and deal with the payback it’ll cause if they do it while I’m not really well enough as I’m meant to be going to the hospital on the 16th and I’ll need the room for the stretcher. But it takes so much energy dealing with the constant questions about where things go (which I mostly can’t answer because I can’t see if there’s room on the shelves or in the cupboard or anywhere else). Then it takes one day for there to be random stuff on the chair, wipes on the floor, I knock things off the bedside table, random bowls or plates to be left in here, toothpaste not taken back to the bathroom. No one is to blame but I can’t fix it, and I’m not well enough to ask anyone else.

I need to sort getting the sofa, broken wheelchair and boxes of electronics taken by the council. I nearly got the first part of this this done but needed to know how many boxes of stuff there are as they’ll only take what’s listed. Johan said he’d let me know but never did. The second part requires Johan to pay for them to be taken which I’m scared he won’t be able to do when it needs doing. At the moment there’s no way to automatically pay online, and I’d need the council to tell me how much it’ll be because there’s nothing on the price list for boxes of broken electronics and computer parts. With Johan not doing well we’re stuck and it means I can’t buy the daybed and they might refuse to put my hoist in there (and in here if my bedroom is still a mess).

We’ve heard nothing about Johan’s support. The last we got was a letter with a provisional budget and his statement of needs but it’s been silence since then. Neither of us are in a fit state to be chasing it up. The support for him would, in combination with my care being rearranged to work with it, solve most of the problems we’re having, as some of it is to communicate with other people for us. I basically can’t read letters on paper now without massive effort (the words fade in and out and the letters keep switching around – it’s better on a screen with larger text as they stay put more) and made myself stupidly weak just trying to read the DLA form that was meant to be in months ago. I want to fix things but I can’t.

I’m not asking for advice on how to solve the issues I’ve mentioned, just wanted to state some of the things I’m frustrated with. What I am asking is how can I cope with the frustration of things being wrong but not being able to fix them?