Category: Penguins!

Danni

Stolen Meme Goodness – Old Schooling

Autism, Computers, Danni, M.E., Meme, Penguins!, Physical Disability, Real Life

I’ve got lots of things I want to blog about, so of course I can’t seem to manage any of them. Instead, here’s a meme I stole from Stimey.


What is the last thing you watched on TV?
Part of a My Little Pony episode. I realised I had no idea what was going on halfway through and haven’t finished it yet. I’ve still got stuff to watch from Christmas.

When did you last step outside? What were you doing?
Last time I stepped outside was one step while held up by two ambulance men to get from the front door of my old flat onto a stretcher, in December 2011 (I couldn’t really walk but it counts). I was going to hospital to get some teeth removed. Last time I went outside was in January. I went to the bottom of the ramp in my wheelchair to see outside and it was amazing.

What is on the walls of the room you are in?
A penguin that Sammie painted when she was in nursery. She gave me it a few years ago. I’ve yet to get my other pictures and posters up, but it’ll happen at some point.

If you became a multi-millionaire overnight, what would you buy?
A bungalow with lots of adaptations to make it accessible to Danni’s. A special hospice for those who are severely ill and need extra quiet and care. An awesome computer 😀 I’d also employ some awesome people to help me and Johan out.

Tell me something about you that most people don’t know.
In year 7 I won an award for RE presented by the Archdeacon of Liverpool. In year 9 I failed my RE exam by falling asleep during it.

Who made the last incoming call on your phone?
An unknown number on my mobile. We suspect it was the GP surgery as they phoned our landline a couple of minutes later. I don’t use the phone.

If you could change something about your home, without worry about expense or mess, what would you do?
Get that hoist I need installed. Figure out a way of installing a bath. As it’s a flat we’re limited in what we could do building wise, so moving would probably work better for bigger stuff.

What was the last thing you bought?
A phone charger for a friend. Before that, Windows 8.1 Pro and Object Desktop for my computer (yay discounts!).

Would you go bungee jumping or sky diving?
When I’m a bit better, definitely. Not sure my body could tolerate either right now 😉

If you could eat lunch with one famous person, who would it be?
How do I work out what famous means? There are a lot of people I’d like to have dinner with who are pretty well known, at least in the communities I’m in. I think having dinner with Maureen Johnson would be interesting.

Which store would you choose to max out your credit card?
First I need to get a credit card, then it depends if I have to pay it back again 😉 I love geeky shops, book shops, and small shops with awesome things. If I have to pay it back, I’m most likely going to spend it on something we need.

Is the glass half empty or half full?
I don’t know as I can’t see it. My hydrant is empty as I just finished the juice in it. The glass might just be twice as large as it needs to be. In the metaphorical sense, it’s kinda both. There’s good and bad in the world, and though I try and concentrate on the positives that doesn’t mean the negatives aren’t there.

What’s the farthest-away place you’ve been?
Either Calais, France or Balmedie, Aberdeenshire, Scotland. France is more foreign but at the time Balmedie was further from Liverpool. I need to see which is now I’ve moved north east 🙂

What’s under your bed?
I’m not meant to have anything under my bed as it’s a hospital one. In reality I have a storage bag of clothes, and whatever I’ve knocked off the bed or tables (there’s probably a few penguins, milkshake bottle tops, empty blister packs, small sweets that insist on escaping like smarties).

What is your favourite time of the day?
Probably nighttime. I’m naturally nocturnal and it tends to be quieter. Also, any time of day where my painkillers have kicked in and my symptoms aren’t too bad.

What Inspires you?
People who are able to keep going, especially when life is being crappy. Also those who are strong enough to ask for help when they need it, or know when to stop (it’s often harder than trying to push through). Also penguins.

If you want to do this meme, I’d like to read your responses, whether on your blog or in the comments. Also, Stimey’s responses cheered me up 🙂 Proper blog post coming when able.

Danni

Goodness

Autism, Computers, Danni, Gaming, Important Stuff, M.E., Penguins!, Physical Disability, Real Life, Second Life, World of Warcraft
Penguin and Penelope. Penny's wing is bandaged.
Penguin and Penelope. Penny’s wing is bandaged.

I’ve had a rough day. My prescribed Fortisips arrived and though I was meant to be prescribed only chocolate and vanilla flavours, the first one Johan gave me was Fruits of the Forest. Which my body reacted to as badly as it did the Skittles milkshake and strawberry milkshake I tried, confirming that I can’t have fruit flavoured heavy drinks now (I can manage fruit squash okay, but pure fruit juice, smoothies and fruit milkshakes cause worse nausea; and burn my throat and taste disgusting when they’re brought back up). I also had my body attempting the final part of digestion, which had me shaking, sweating, curled up in a ball and at one point crying from the pain. It lasted several hours, and I’m grateful that I didn’t have to attempt it on a bedpan or toilet as though the clean-up sucks being able to lie on my side did help a bit. I think the worst of it is over this time.

Penelope’s wing got burnt in the microwave 🙁 I performed surgery (cutting away the burnt fur/feathers and removed the burnt stuffing) and have used a part of a dressing to stuff her wing and have bandaged it up. We’re going to look into a skin graft but even if that is possible her heating days are over. I’m giving her loads of cuddles and she’s asked me to find one of her siblings to do her job. Unfortunately the Intelex website is out of stock of Penny’s sisters, but I’ve emailed them asking when they’ll next be available and if that fails, I’ll look elsewhere. She might be a disabled penguin now but I still love her very much.

Despite all that, I’m happy. I believe that every person has at least some goodness in them (even Tories, though it can be hard to see there) and my friends show me their love and goodness all the time. I have Johan, who does everything he can to make me feel as comfortable and well as possible (and didn’t even complain about the messy clean-up earlier). It can be easy to think everyone and everything is bad when that’s what must of the news concentrates on, and there are a lot of bad things that happen, but there are people trying to make the bad things less bad and do more good things. One of Nerdfighteria’s aims is to reduce world suck (the other main one is DFTBA – don’t forget to be awesome).

I might blog about the downsides of having severe ME (and like a lot of disabling chronic illnesses it sucks a lot) but part of me learning to adapt to it was to try not to dwell too much on it. Blogging and tweeting helps me with this- once I’ve written about it it frees my brain to think about other things, and knowing that there are people who care really helps. Having ME has opened me up to a whole community of good people I proudly wouldn’t have met before, some of whom I now class as friends. I still want a cure and wish my friends weren’t suffering, but I’m grateful for what it has brought me. (I try and keep out of the politics side of ME for the same reason I limit my intake of bad news- there’s nothing I can safely do to help and there’s a lot of (mostly justified) negativity that makes me more ill.)

I’m also grateful to be Autistic. Unlike the ME I don’t want to be cured, despite the difficulties it can cause. I like who I am and I wouldn’t be the same person without it. I discovered Second Life through the autistic community, and without that I would never have met Johan. Autism doesn’t make me ill- it means I think and process stuff differently, but it’s not broken. I have super senses- it may mean I can’t tolerate loud noises or certain smells but it also allows me to enjoy lights and sparklies in a way I can’t explain. And every time I see a penguin it makes me very happy. The autistic community has also introduced me to some awesome people I otherwise wouldn’t have met, and learning there were people like me has been very positive.

Lent begins tomorrow. I’m not giving anything up for it this year- if I were to give up something food related I think my dietician would kill me, and I’m not sure what else I could give up. Instead, I’m going to try and do nice things for people. After I wake up I’m going to make a list of the specifics of this, but some ideas I’ve had are writing a note to someone on Post Pals, sending someone who needs cheering up a small gift, and seeing if I can help someone with one of my skills (I might not have many I can currently use, but there are still some).

Good things that have happened today include playing some World of Warcraft, Johan and the other raiders in my guild managing to kill Heroic Paragons, managing to install a new beta version of Paranoid Android on my tablet (accidentally wiping it in the process, but it needed it and I’d backed it up yesterday), cuddling my Penguins, making Penelope feel better, getting clean, dry pyjamas on, joking with Johan, talking about interesting things with my guild in Mumble, playing with the Google Now speech recognition stuff, and writing this blog post. That’s quite a lot considering I’ve been awake less than twelve hours and haven’t got out of bed 😛 Time to sleep now, and that’s good too.

Danni

Busy March

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

Although the beginning of the month took me by surprise (yesterday I woke up late after a 16 hour sleep and was convinced it was still February until I got my Brew of the Month club mail in World of Warcraft) it’s shaping up to be quite a busy one for us.

Becca is staying with us next weekend as she’s going to Newcastle Film and Comic Con and we live much closer than she does (she lives in the middle of nowhere with a rubbish bus service and worse internet connection, we’re quite central with decent buses, walking distance from Newcastle if necessary, and awesome internet). I wish I could go with her as it looks to be amazing but will have to experience it second hand. Her staying here should make that easier though 🙂

Vicky has invited Johan to go see the ballet in Leeds the week after, and he’s going to go down a couple of days early to see his parents and friends and so on. Becca has kindly offered to look after me so I don’t have to go into a care home 🙂 After the ballet Vicky is going to come back with Johan so I can see her before she goes gallivanting across the world. It’s been a while since I last saw Vicky in person so it will be awesome. She’s a low energy person so I’m hoping to be able to chat while she’s here 🙂 (Different people require different levels of energy for me to be able to be around them- it’s not a bad thing, or related to how much I like the person, just something I have to take into account when it comes to visits and things.)

The week after that I have the CFS team coming out to see me. It was meant to be to discuss my visit to see my consultant but since that hasn’t happened I’m not sure what we’ll be discussing. They are helpful but exhausting so that is also a big event in my calendar.

I am not doing amazing at the moment. The curtain has been up for a while and today I’m non-verbal again. Moving causes my back to go into spasm so I’m trying to remain very still. Johan has dosed me up on painkillers and an antiemetic to help with the nausea and heated penguins so I’m as comfortable as I can be, which is good.

Yesterday my carer went to Primark for me to get me a penguin onesie. Although I have one, it’s huge (XL men’s) and I wanted one that would fit a bit better. They were reduced and since she was going to be in there anyway she offered to get one for me. I love it and can’t wait to be well enough to try it on 😀

My World of Warcraft playing is good at the moment. Not well enough to do any raids (not even LFR) so I’ve been concentrating on levelling. My blood elf paladin Catalia is now level 73, and my recruit a friend character that I’m levelling with Becca, Caitlyna, has reached level 60. We’ll be going to Outland when we next play together 🙂 It’s interesting trying to teach her- she wasn’t doing well on DPS in dungeons (she was asked about it during one of the runs- once I explained she was new they were fine though) and I discovered it was mostly because she wasn’t using charge (her character is a fury warrior). I’m also trying to teach her not to click the abilities and to use the keyboard instead, but she’s finding it difficult. Unfortunately unlike me she’s unable to touch type which helps a lot for being able to use key bindings without looking, but I’m hoping with practice she’ll be able to manage it at least some of the time. I showed her where the training dummies were in Stormwind and asked her to install a damage meter so she’ll be able to practice 🙂

I’ve been watching a lot of Foster Kitten Cam recently. The Ghostbuster kittens are so cute! It was sad last night though as Peter, one of the kittens, died in Foster Dad John’s hands. It upset me quite a bit even though it’s not uncommon for kittens to not survive. He was so active, constantly trying to escape, and I know he will be missed by a lot of people. His litter mates, Egon and Ray, are also really active and keeping their mamma Janine busy. Earlier today one of them escaped the box and mamma had to carry him back in 😛

I tried to watch some Hearthstone earlier but not quite got the concentration for it. I think I’ll go do some easy levelling or something in World of Warcraft. I’m hoping my body starts behaving better soon but until then I’ll just do what I can to not get worse and distract myself from the worst of the blehness.

Danni

Random Thoughts By My Brain

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

Lying here in bed feeling rather sick, dizzy, boaty and, well, ill, I’m doing quite a bit of thinking about random stuff. This is just a brain dump.

Accessible buildings are good. Accessible attitudes are better. My old pharmacy had a curved step up to the door. Not ideal if you use a wheelchair. They had a ramp available and showed us how to get their attention if we needed it. If we didn’t want it (sometimes Johan would just lift my chair up the step, and it wasn’t designed for a curved step so was scary) they’d hold the door open. They eventually moved to a new premises when the doctors did, with a proper ramp built in. But I knew I could get in because they wanted me to be able to.

The local supermarket was level access. Automatic door. Apparently accessible. But less accessible than the pharmacy because they’d put temporary displays in the way so I couldn’t get down all the aisles. And an attitude of not caring. They didn’t want me to be able to access it, so I stopped going there.

A small independent clothes shop I love. The shop very small, and there wasn’t quite room for my longer than average wheelchair to get around. They acknowledged me every time I went in, offered to move displays so I could get around, and bring things to me if it was out of reach. Agreed it wasn’t ideal, but the attitude made me feel valued. Their bigger shop was easy to get around, but they were just as friendly.

A large chain clothes shop. They have a lift, and level access. And put the clothes displays even closer together than the independent shop did, so I couldn’t see everything. And indifferent staff.

Years ago, getting the college bus was a friend from my course and occasionally there was a girl with learning disabilities who would get the same bus as she lived in the same general area as we did. My friend treated her the same as he does everyone, with mild friendly insults (not related to her disability). She’d laugh at them, as I did with mine. We had fun. He was told off for treating her as an equal. I still don’t understand why.

Events for the general public that ended up being more accommodating of me with my disabilities than events for those with one of them. Feeling valued as a person, and when I became unable to attend any longer asked if there was anything they could do to make it easier for me. Yet the event for people with specific disability being held in noisy, inaccessible pub that made it difficult for those with that disability, never mind any additional ones.

Since becoming visibly disabled (I’ve always been disabled, it was just “invisible” until the ME required me to start using mobility aids) I’ve been learning more about what accessibility is, and not just for those with mobility issues. Before I used to feel like I was the problem, now I want reasonable adjustments to be made, especially since those adjustments can make things easier for the general public as well.

The most patronising person was someone who provided special needs dentistry. As soon as she discovered I was autistic she stopped talking to me as an adult (as she had been up to then) and started talking to me as if I was a naughty child. And spoke to Johan as if he was my parent, not my partner. Neither of us knew how to respond to that, and it was a relief to be referred somewhere else. They treated me as an adult, even when I appeared odd or couldn’t speak.

There are awesome people who go out of their way to help, but in appropriate ways after checking such help is wanted. And other people who try and force unwanted help on me, even when it’s completely inappropriate. And awesome people who are quietly accepting of difference, making me feel like I’m wanted and worthwhile.

Accepting help is hard. I still want to be as independent as I did before ME. Yet accepting help enables me to have a decent quality of life despite severe illness. Sometimes I still push to do things myself and make myself more ill, because I feel like I should be doing it and don’t deserve help. But I’m slowly learning. My worth is not based on what I do, but on my being a person.

I feel extremely lucky and I’m very grateful for what I have. I have amazing friends. I have great family. I have Johan. Thanks to the benefits system, we have enough money to live on, which also means Johan can be my carer full time. I have access to the NHS, which despite all its faults has kept me alive and is part of the reason I have such a good quality of life now. I have health professionals who visit me at home, medications that help a bit with some of my symptoms, incontinence pads that keep my dignity, and an adjustable bed that helps me not get bed sores.

And yes, I do rate my life as good, despite being in constant pain, feeling terribly ill and completely bedbound. ME is an incredibly sucky illness, but I can do things, even if they’re only small things like roll over in bed or communicate. Deciding to stop fighting being ill and learning to live with it was one of my better decisions. It doesn’t mean I don’t want to get better and I’m hopeful I’ll improve in the future, but my body is trying to keep me alive through everything and if I work with it I think I’ll give it the best chance to keep going and hopefully start working better.

And there are penguins. Everything is better with penguins.

Danni

2013 In Review

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

My now annual review quiz of the year 🙂

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 😛 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  Sammie’s visit will be remembered for a long time 🙂

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

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 🙂 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 😛

17. Compared to this time last year, are you:
a) happier or sadder?
Happier 🙂
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 🙂
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 🙂

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

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 🙂

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 🙂 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 🙂

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

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

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 😛

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 😛

Poseidon by Po
Poseidon by Po