2013 In Review

My now annual review quiz of the year πŸ™‚

1. What did you do in 2013 that you’d never done before?
Get an adjustable bed. It’s made a massive difference to my quality of life.

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I kept three of four well. I’m going to keep working on the fourth this year. I’ve made some more for 2014 (in the previous blog post).

3. Did anyone close to you give birth?
Nope.

4. Did anyone close to you die?
No.

5. What countries did you visit?
Antarctica via the telly (yes, it’s a continent). Really though, I didn’t go further than about a mile away from home (the local hospital- the care home I stay in is even closer).

6. What would you like to have in 2014 that you lacked in 2013?
A hoist and a shower chair so I can get out of bed and get clean πŸ˜› Better health would be nice as well (and if it’s loads better I wouldn’t need the hoist).

7. What dates from 2013 will remain etched upon your memory, and why?
I can’t remember the date due to brain fog, but I think Β Sammie’s visit will be remembered for a long time πŸ™‚

8. What was your biggest achievement of the year?
Seeing Sammie. Also probably visiting Johan in hospital πŸ™‚

9. What was your biggest failure?
My health.

10. Did you suffer illness or injury?
Overall I had the worst year so far health-wise, and was bed-bound almost the entire time. I had a kidney infection as well that is still causing me problems months later.

11. What was the best thing someone bought you?
I don’t think this question is ever going to be easy. Johan got me a Blu-ray player and Spy in the Huddle to watch on it. Someone got me the softest penguin poncho. Sammie got me Oggy, a toy dog with a heart on saying “Love you… with all my heart!” which was incredibly thoughtful. A friend gave me loads of Christmas presents including a penguin adoption, penguin pyjama bottoms and the cutest little purple penguin. Seriously, I’ve been incredibly spoilt and I know I’ve missed some awesome presents here.

12. Whose behaviour merited celebration?
Johan’s again. My friends who have been there for me.

13. Whose behaviour made you appalled and/or depressed?
Tories. Lib Dems. People who spout hatred. Atos. Whoever decided that benefit delays were not a problem (I’m lucky that mine are sorted, but Johan’s PIP claim is still waiting for ATOS to contact him).

14. Where did most of your money go?
Food, bills, disability stuff and care home fees.

15. What did you get really, really, really excited about?
Sammie πŸ™‚ Talking to Sammie was amazing. Seeing Sammie was amazing. She is an amazing person.

16. What songs will always remind of 2013?
What does the fox say? And Saturday by Rebecca Black πŸ˜›

17. Compared to this time last year, are you:
a) happier or sadder?
Happier πŸ™‚
b) fatter or skinnier?
About the same, as unfortunately I lost some of the weight I regained over the year. I’ll get it back though πŸ™‚
c) richer or poorer?
Richer, as although my income hasn’t increased my outgoings have dropped a bit.

18. What do you wish you’d done more of?
Keeping in touch with people. Getting out of bed.

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

20. How do you plan to spend Christmas?
I spent most of Christmas sleeping, as I was in the middle of a relapse. I’ve got my Christmas dinner to look forward to and I got some lovely presents though πŸ™‚

21. Did you fall in love in 2013?
I fell more in love with Johan, if that counts? πŸ™‚

22. How many one night stands?
None.

23. What was your favourite TV programme?
Doctor Who, My Little Pony: Friendship is Magic and Penguins of Madagascar πŸ™‚

24. Do you hate anyone now that you didn’t hate this time last year?
Hatred is such a strong term. I still strongly dislike the government but I believe that was the case last year as well.

25. What was the best book you read?
Raffie Island and Queenland from the Portal series by Dee Kirkby for children’s books, Let’s Pretend This Never Happened by Jenny Lawson for adults.

26. What was your greatest musical discovery?
I didn’t listen to much music this year, so I can’t think of any.

27. What did you want and get?
To see Sammie πŸ™‚ A Blu-ray player and Spy in the Huddle on Blu-ray. Purple penguins.

28. What did you want and not get?
My health to improve, and a hoist so I could get out of bed.

29. What was your favourite film of this year?
I watched The Hunger Games. That was awesome.

30. What did you do on your birthday?
Slept and had a takeaway. I wasn’t doing brilliantly.

31. What one thing would have made your year immeasurably more satisfying?
Being able to get out of bed, being able to communicate more with friends and family. I was still happy though πŸ™‚

32. How would you describe your personal fashion concept in 2013?
Purple penguin hat πŸ˜› Also wearing a purple Snuggie a lot over pyjamas.

33. What kept you sane?
Chocolate, penguins, Twitter and friends πŸ™‚

34. Which celebrity/public figure did you fancy the most?
I don’t think there were any this year.

35. What political issue stirred you the most?
Welfare reform rubbish, including Bedroom Tax, PIP, ESA and other stuff.

36. Who do you miss?
Sammie, my friends.

37. Who was the best new person you met?
I honestly don’t know.

38. What was the best thing you ate?
The chip I had from Johan’s takeaway when I started recovering from my relapse just after Christmas πŸ˜›

39. Tell us a valuable life lesson you learned in 2013?
As much as I want to, I can’t save the world or even my friends. I can try and cheer them up a bit, though.

40. Quote a song lyric that sums up your year:
No songs, instead Poseidon wants his self portrait here πŸ˜›

Poseidon by Po
Poseidon by Po

New Year Resolutions for 2014

Fireworks in London to bring 2014.
Fireworks in London to bring 2014

Another year has passed. I am not at all ready for the start of 2014, but time carries on whether I want it to or not.

2013 was a strange year for me. I felt mostly at a standstill- I guess not really getting out of bed for over a year would do that. I’ve been up and down healthwise, and moving things into my room so I could access them from bed definitely improved my quality of life, even if it did feel a bit like giving in at times.

I’m doing better than I was a few days ago. As is not uncommon for me, I improved as rapidly as I deteriorated, so I’m able to deal with the normal level of lighting in my room again, normal (quiet) sounds, raising my head in bed, and I’m rolling over and eating better (though still not as good as normal). I even got dressed into clothes today πŸ™‚ My speech went weird for a bit, but I think it’s finally back to relative normal (speaking is hard work but I can do it).

So, resolutions. Last year’s were all technology related:

  1. Comment more on blogs. Β – I think I’ve done okay on this. Not commented anywhere near as much as I’d like, but I have commented on quite a view blogs I like to read. Unfortunately some of the ones I like have captchas that mean I just can’t comment on them, but I managed it overall.
  2. Sort out my emails. Β – My emails are nicely sorted, with filters into different labels (on GMail used in place of folders) for all my different types of email. Not perfect, but it’s an awful lot better than it was. I’ve also managed to stop using my dannimatzk.co.uk email address completely. That’s a success then πŸ™‚
  3. Sort out my Google Reader and Pocket. Β – Google Reader died! That was unexpected at the time. I ended up moving to Feedly, and overall it’s working a lot better for me than Google Reader was at the beginning of the year. My Pocket is mostly clear of stuff to read now, and while it’s almost empty I’m thinking of setting up the tags to make it even better for me. Took a long time but I managed this one πŸ™‚
  4. Try and communicate better with my friends. – This one has been a bit more hit and miss. I wasn’t expecting to be so ill for the entire year. I think I did better than 2012 but I want to carry on trying to improve.

Overall I did quite well on them. I’m going into 2014 with my technology more sorted. So now it’s time to decide on new ones for this year πŸ™‚

  1. Have a bath or a shower.Β I’ve not had a shower for nearly 18 months, and it’s been about 2 years since my last bath. I have a wet room but no suitable shower chair, which they won’t give me until I have a hoist, which they won’t give me until I’ve had the case conference, which I can’t have until I’ve seen the consultant, who I can’t see until I can get transport sorted (but is meant to be happening in February). Yeah, complicated. Anyway, I have a massive build up of dry skin on various parts of my body, and wipes and the occasional bed bath just isn’t cutting it now. I want to be properly clean. I have an entire year to figure out getting a bath or shower, so hopefully it’ll happen πŸ˜€
  2. Sort out health book/care plan.Β This is something I’ve been wanting to do for a couple of years now, but I’ve not actually got around to doing it. Recent issues with my current carer have shown that I really need to have my needs at different times down in writing, as when I’m particularly ill (and Johan is as well) that’s not the best time to be trying to explain stuff. I also want to include an alphabet board for communication when I can’t speak or type. The main issue I can see with this resolution is that I need help with printing, and whenever I ask Johan to print something for me he meows and panics. Luckily I have all year to think of a solution to that (though the sooner the better :P).
  3. Be kind to others.Β Sometimes when I’m not doing so well I forget that other people can be hurt by what I say or do. I’ve been incredibly touched by how kind people have been to me the last few years, and I want to try and pass that on in any way I can, and try and think of how my actions can affect others. In the event I do hurt someone else (no-one is perfect, least of all me) then I hope I will be able to apologise and try and make things right.
  4. Be kind to myself.Β Β This has been my resolution before (I think for 2011) but it’s one of those that I think I could do with a reminder of. I’m slowly learning that sometimes to be kind to myself I don’t have to do what others want of me, and I shouldn’t be any harder on myself than I am on anyone else. I also don’t have an obligation to keep in touch with people who ultimately make me feel worse (either about my self or generally health-wise) and so I need to work on being more assertive when it comes to that.

I think that will do. Two rather practical resolutions, and two that are going to be harder to quantify but are ultimately more important. I also have some goals for the year that aren’t resolutions, such as getting an iPad with Proloquo2Go, trying to blog at least once every month and getting out of bed again, but one of those is funds related and the others are very much health dependent so I’ll have to wait and see. I’m praying this year will be better healthwise for all my spoonie friends, and as good a year as possible for everyone I know πŸ™‚

Merry Christmas

To everyone who reads my blog (nor not, though then you can’t see this message) I wish you a very Merry Christmas. If you don’t celebrate Christmas, I hope you have a very Happy Newtonmas or Wednesday.

I don’t know what I’m doing for Christmas yet. My plans have been put on hold while I’m this ill until I improve a bit. I’m hoping to try and open a present or two, but I’ll have to see how I am. Johan is cooking lamb for his dinner, and will be making my Christmas lunch when I’ve improved enough to eat it. We’ll be putting my Christmas tree and decorations when we can.

This is the first Christmas where I’ve been this ill (though the last two December’s I also relapsed, it earlier in the month and I was improving by the day itself) so we’ll play it by ear. I’m sure we’ll find a way to make it special, even lying in a dark room with earplugs in, unable to speak and feeling horrendous. My thoughts go out to everyone who is suffering this Christmas, for whatever reason. Take care πŸ™‚

Relapsed Again

I’ve relapsed again. Not unexpected but unwanted. I created a Caring Bridge site (specialised website for communicating about health crises and similar) with a password so I can go into more detail than on here without it being public and so Johan can update my behalf. If you’re a close family member or friend and want to be kept to date, contact Johan about it.

I’ll still be trying to update this blog when I can, but might be a bit quiet for a while. I’m hoping this relapse doesn’t last too long.

WTB: Better Neighbours

Been trying to write a proper blog post for ages. Brain not working enough. Decided on a list instead to get things down.

  • Blizzcon happened. Was amazing. Still not watched everything I wanted to (kept falling asleep) but I’m very excited for Warlords of Draenor and Hearthstone. Heroes of the Storm sounds good too.
  • Have been playing Minecraft recently. Currently working on automating all my machines and breeding bees. Advice from friend who has done bee breeding is don’t. There is a lot to it so he might have a point πŸ˜›
  • Sometimes playing World of Warcraft, especially flexi runs with my guild. Brain brokened = terrible healer. Still fun though πŸ™‚ My UI is buggy and I’m not well enough to sort it out.
  • Wanted to write something for the This is Autism flash blog. Wasn’t well enough. Instead read lots of blog posts and they were good. Linky -> Β http://thisisautismflashblog.blogspot.co.uk/
  • Health is not so great. Seems this time of year is not good for me. Told CFS team I was improving then a week later started deteriorating again. Having sleep paralysis and other scary symptoms again.
  • Neighbours are main cause of deteriorating health. They are being really noisy again. We have told the council and there are anti social behaviour cases against both upstairs and across from us (upstairs are worse but across has been bad as well). I haven’t have a full night’s sleep since across from us returned from who-knows-where.
  • Our key safe was stolen. Coincidentally, it was stolen after the upstairs neighbours were watching my carer use it. Because of that our flat and both communal doors have had to have the locks changed. That is a big hassle we could have done without. It also means we’re back to Johan opening the door for the carers, and he’s missing out on stuff he wants to do.
  • For now, my care and equipment stuff is on hold. My GP wants me to see the consultant again before having the case conference about it. I don’t think my GP realises how ill I am, as she keeps wanting me to go for hospital appointments and I’m not really well enough. I was discharged from the consultant as I was too ill to go see him, when I was doing a lot better than I am now. Constantly being asked about it is not helping.
  • I’m becoming less able to do certain stuff. Emails are impossible (I’ve been trying to write one for the past two months, and it’s urgent) as it communicating the information to someone else to write it for me. Speech is getting harder. Doing a food shop online is nearly impossible, and Johan is struggling as well. I am getting a bit concerned about it.
  • Had first McDonalds in over a year. Would be on a day where my digestive system was in full rebellion so I couldn’t enjoy it. It was the day Johan felt up to getting it though so I didn’t want to miss the opportunity.
  • I think I’m losing weight again. Can’t be certain but my clothes/pyjamas are feeling looser and Johan’s noticed my fingers are looking thinner. I really need to keep my weight up but eating is hard πŸ™
  • I have Christmas to sort out, especially Sammie’s Christmas and birthday presents. Her main Christmas present is ordered but I need to get everything else. I have some ideas but need to check they’ll work, which means writing that email…
  • I want to swap some of my distraction spoons (that I use for watching telly, gaming and reading) for doing stuff spoons (for use on food shops, emails and other stuff). Unfortunately when I’m not distracting myself then the pain and blehness and feeling horrendous gets worse, and that’s what is interfering with the getting things done.
  • I have not been on social networks or up to chatting much recently. See blehness and stuff.
  • I have finally caught up with the last season of Doctor Who and am looking forward to the 50th anniversary episode. Not sure if I’ll be able to watch it as it’s broadcast though I’ll try πŸ™‚
  • My Virgin Media TiVo box now has Netflix. This makes it easier to watch stuff on there without needing to turn my computer on first. Only UK stuff but there’s some awesome kid’s stuff I can watch when not well πŸ™‚
  • I have penguins. Penguins are awesome.

I’m sure I’ve missed tons of stuff, but at least this way I’ve got something down.