Author: Danni

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

2011 In Review

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

I did this last year, and enjoyed it so will repeat it for this year.

1. What did you do in 2011 that you’d never done before?
Had an entire year as an adult without depression 🙂 Also, got an A in an AS Level exam 😛

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I mostly kept to them, and have made more (see previous post).

3. Did anyone close to you give birth?
Not that I know of.

4. Did anyone close to you die?
No.

5. What countries did you visit?
I stayed in England this year.

6. What would you like to have in 2012 that you lacked in 2011?
My health would be nice…

7. What dates from 2011 will remain etched upon your memory, and why?
26th December. I made a phone call to Sammie for her birthday and didn’t panic!

8. What was your biggest achievement of the year?
Probably improving my phone phobia, though passing my exams was cool too 😛

9. What was your biggest failure?
My body. It decided that it wasn’t already annoying me enough and made things a lot harder.

10. Did you suffer illness or injury?
My M.E. got a lot worse, resulting in me being completely bedbound at times, and mostly bedbound for about half the year. Also lost the ability to walk completely, so when I could get out of bed I had to use the wheelchair. I also had some teeth taken out under a general anaesthetic, with one of them having been bothering me since 2010.

11. What was the best thing someone bought you?
Sammie bought me a World’s Greatest Mummy cup. She also made me a penguin. (I do appreciate the penguins other people have given me this year, but Sammie wins. Sorry.)

12. Whose behaviour merited celebration?
Johan’s, for looking after me, and my friends on Twitter and AYME for being so nice, kind and understanding (that includes all of you with depression).

13. Whose behaviour made you appalled and/or depressed?
Most of the Tory and Lib Dem government.

14. Where did most of your money go?
Bills and disability equipment.

15. What did you get really, really, really excited about?
PENGUINS!!!!!! 😀

16. What songs will always remind of 2011?
Forever Yours by Alex Day.

17. Compared to this time last year, are you:
a) happier or sadder?
Happier.
b) fatter or skinnier?
Skinnier. I keep losing weight. I’m happy with it, and want it to stay the same now, but I don’t seem to have much control over it.
c) richer or poorer?
Richer

18. What do you wish you’d done more of?
Probably blogging.

19. What do you wish you’d done less of?
Pushing myself too hard.

20. How do you plan to spend Christmas?
I spent Christmas in bed, being waited on by Johan and watched Doctor Who. Happiness.

21. Did you fall in love in 2011?
Nope, but I made some new friends who I love 🙂

22. How many one night stands?
Since I haven’t been able to get out without Johan all year, I’d wouldn’t have been able to even if I wanted to (which I don’t, as I have Johan).

23. What was your favourite TV programme?
Doctor Who!

24. Do you hate anyone now that you didn’t hate this time last year?
Still don’t hate anyone. Dislike the government.

25. What was the best book you read?
Either Sapphire Battersby or the Hunger Games series.

26. What was your greatest musical discovery?
Alex Day and Chameleon Circuit.

27. What did you want and get?
Penguins! An A in my AS Computing. I also got the new television I wanted last year 😛

28. What did you want and not get?
My health to improve. Instead it got worse (I am not happy with you, body).

29. What was your favourite film of this year?
Harry Potter and the Deathly Hallows Part 2.

30. What did you do on your birthday?
Received a big DLA back payment, so bought a television 😛 I also ate Doctor Who cake. The day before I’d gone to Flamingo Land with Johan and college so got to go on the rides and see the penguins, which was awesome.

31. What one thing would have made your year immeasurably more satisfying?
My health being better, though to be fair the year was very satisfying anyway 🙂

32. How would you describe your personal fashion concept in 2011?
Purple and pyjamas.

33. What kept you sane?
Chocolate, penguins and Twitter 🙂

34. Which celebrity/public figure did you fancy the most?
Summer Glau (still).

35. What political issue stirred you the most?
The government making things even harder for poor, ill and disabled people. Stupid idiots.

36. Who do you miss?
Sammie, as I’ve not been well enough to see her this year, though I am in contact with her.

37. Who was the best new person you met?
All my new friends on Twitter and at AYME 😀

38. What was the best thing you ate?
I’m not sure. At times just being able to eat was amazing 😛

39. Tell us a valuable life lesson you learned in 2011?
It’s a really good idea to listen to your body if you’re ill, otherwise it may rebel against you.

40. Quote a song lyric that sums up your year:
I can’t think of a song lyric 🙁 Giving up after about half an hour of trying to think of one.

Danni

Happy New Year!

Danni, M.E., Mental Health, Physical Disability, Real Life
Danni sitting in bed, drinking from a wine glass with a straw.
Danni sitting in bed, drinking from a wine glass with a straw.

So it is now 2012. A year where lots will probably happen, but I only know a little of it. London is hosting the Olympics, we’ll probably move house. Johan will find out if he’s on the autistic spectrum or not.

Last year I made some resolutions. Here they are:

  1. Be kind to myself.
  2. Be more aware of my limitations, and stop overdoing it so much.
  3. If something is medically wrong, seek help sooner, rather than 6 months down the line.

I think I did well keeping these over the year. I was much kinder to myself, with the result that I’m much happier than I was a year ago. My anxiety levels have dropped a lot, and this has meant I’ve been able to work on some of those pesky phobias. The second one took a while to get used to, and I still slipped up (especially trying to go back to college for a second year) but overall I’m much better at being aware of my limitations and sticking to them. As for the last one, I did seek help when I needed to a few times. Luckily I’ve had no major new symptoms in the last year, they’ve just been a lot more severe. When I did get something new (chest pain) I sought help immediately and it was sorted quickly. The only problem with it is now I can’t see doctors by leaving the flat without breaking number 2 😛

For this year, I’m making very simple resolutions.

  1. Try and get better.
    By this I mean do whatever is in my power to improve, such as resting enough and listening to my body. The improvements I’ve seen in the last few days mean I’ve got a head start on this one 🙂
  2. If I can’t get better, try not to get worse.
    Since I can’t control M.E (as much as I want to), I’m not going to be upset if I don’t improve. I will however try and prevent relapses and things.
  3. If I can’t do either, try and stay happy.
    I may not be able to prevent myself getting worse, but I do have some control over my emotions so I’ll try and remain happy anyway 🙂

To keep this year’s resolutions, I’ll have to keep last years. I’m happy with that 🙂

Danni

Improvement

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

I’m still nocturnal, so when I say day I mean the period of time I was awake (starting around 7pm last night).

I have just had the best day physically for about 3 months. My pain was well managed with painkillers. I managed to eat with a spoon, only dropping it occasionally and the hand spasms being short lived. I sat in my computer chair for two periods, both of several hours. This I was able to do as I didn’t feel worse for being in it- normally within a few minutes of sitting up I start getting very dizzy, more nauseous and generally feel more ill, but today it just didn’t happen. I probably spent far too long sitting up because of this, but I still feel okay now. I even forgot temporarily that I couldn’t walk, so fell over in the attempt 😛

I’m not sure why I’ve had such a good day, but I suspect that it may just be that I’ve been listening closely to my body the last few weeks. I’ve had no external commitments, so I’ve been sleeping when I want, eating pretty much when I want and not pushed myself to do anything that may make things worse. I’ve also let Johan do more for me, and have tried hard not to feel too guilty about it.

This may be a one off. I may have really overdone it today and end up relapsing again. I hope not. M.E is often an unpredictable illness, and since we don’t know the cause we can’t be entirely certain what makes it worse or better (though over-exertion will normally make things worse). Up until now, my general trend has been downwards, gradually getting worse with occasional relapses that are much worse, but which I normally recover from (though not always back to where I was before). That has been the case since I first got M.E over 2 years ago. Some of that has been caused by me being too stubborn and overdoing it, especially with college. Since I quit college in October, it was hospital and medical appointments (including ones to see the CFS clinic and my specialist) that made me overdo it. The only period of relative stability was during the summer holidays this year when I didn’t have college and didn’t leave the flat (and I was doing much better then than I am now). As soon as I started going to appointments and then went back to college, I declined rapidly and ended up nearly completely bedbound (only able to get out of bed for very short periods of time-no more than 10 minutes without getting payback).

I am hoping that today’s improvement is a sign of things starting to get better. I still have a long way to go, as even today I’ve had to have Johan do a lot for me. Cognitively I’m still not even back to where I was pre-relapse, and I feel stupid and very confused most of the time. I will take anything I can get though.

Danni

Brain Fail

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

I want to blog. I have lots of subjects I want to blog about, and even a couple of drafts. My brain its not cooperating with me though so it’s hard for me to write.

I enjoyed Christmas. I’m mostly over the relapse that made me very ill, and back to my “normal” level of functioning. I’m completely nocturnal at the moment, but that’s okay as I have no real need to be awake during the day. I’m sleeping when I’m sleepy, eating when I’m hungry (including lots of chocolate, but it is Christmas), sitting at my computer when I feel up to it and generally listening to my body. I’m also happy.

Facebook is feeling too much for me at the moment. I’m playing a bit of The Sims Social, but trying to keep up with my friend’s statuses is just confusing me. I’m managing Twitter better though, so if you like you can follow me on there @Dannilion.

I know I’ve said this lots recently, but thank you to my friends for being there for me. I really do appreciate it. Thank you also to Johan, who has been doing a remarkable job of looking after me, both during and after this relapse.

Danni

Happiness Is…

Danni, Important Stuff, M.E., Mental Health, Penguins!, Physical Disability, Real Life

Happiness is having a brilliant Christmas.

Happiness is being able to sit up, both in bed and in a chair for a little bit.

Happiness is being able to eat proper food (without choking!).

Happiness is being surrounded by penguins.

Happiness is spending time with a loved one, with no distractons.

Happiness is knowing you have friends who like and love you for who you are.

Happiness is talking to your daughter on her birthday, and hearing the excitement in her voice about Christmas and birthday celebrations.

Happiness is getting all your Christmas wishes coming true.

Happiness is hearing your friends are happy.

Happiness is knowing that your safe and secure.

Happiness is getting lots of lovely, well thought out cards and presents :p

Happiness is being grateful that M.E. didn’t ruin everything.

Thank you.