Category: Autism

Danni

30 Already?!

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

I somehow can’t quite believe that I’m now 30 years old. As my life basically went into standby 5 years ago, I don’t feel much older than I did then.

Had an up and down month. Body misbehaving. Another period (I think there were 2 weeks between them). Neighbours fighting at night. Care agency problems. Meltdowns. Hypersomnia. Talking to awesome people online. Watching lots of penguins. Finally watching Star Trek: Into Darkness (a present Becca got me yonks ago). Overall I’m doing okay, but I still wish I could be doing better.

My birthday was really awesome. The best present I got was Sammie coming over for a visit! That couple of hours talking to Sammie in person has kept me going through all the bad bits. She’s so amazing and I’m incredibly proud of her. She also gave me light up penguins and a holographic penguin card that I’ll have to put up somewhere more permanently. I also got a Fluttershy soft toy, a colour changing egg light, a massive Candy Chaos box (that was from Johan- he knows how to make me happy)  and so many really awesome cards and good wishes. It was really an amazing day and I feel so lucky to have so many people care about me.

Another thing I got really excited about was the Post Pals party. I never thought I could get so excited about a party I wasn’t going to 😛 Post Pals is one of my favourite charities and it was awesome seeing all the planning and then the photos and videos of the Pals enjoying themselves. I’m not able to send letters or gifts very often (writing letters/emails and choosing gifts are often too much for me) but I am able to bug other people to do so.

Saw the district nurses. Told them my pads are leaking, but as I’m already on the highest absorbency they can prescribe they’re not sure what to do. The same day they came out I got a new delivery and it turns out the company has changed them to be even worse. I’m now buying my own more absorbent ones to use while Johan’s at his day service and at night in an attempt to not need to change the bedding every day.

Was meant to see the community mental health team about coping with meltdowns since I can’t use my normal coping mechanisms (movement/loud music) but they couldn’t find a psychologist to come out so they didn’t come. I’m not sure what’s going on there now.

Saw CFS team. Told them have been up and down and other stuff, including that I still don’t have the right hoist slings or a shower seat yet. They’re going to try and chase things again and I’m to keep doing what I’m doing until I start improving.

Have been watching loads of penguins. The chicks are getting so big now! There’s even been a couple of rockhopper intruders recently (kings are visible lots but I’ve only seen rockhoppers a couple of times).

I’ve started loom knitting. It’s like loom bands but with yarn 🙂 I’ve made a hat so far and I’m working on a matching scarf. The acrylic that came in the set I bought is quite scratchy, but I’ve read it’ll get softer in the wash so I’m hopeful that’s the case. I’m very slow at it and I have to take lots of breaks, but I’m so glad to have found a craft my hands don’t complain too much about.

I’ve also started on Duolingo. Concentrating mostly on French, but also learning German and Swedish for fun. Some of the phrases it gets me to say are interesting: two that are memorable are “Nous avons vingt enfants!” – We have 20 children in French, and “Ich bin eine banane” – I am a banana in German. Since “I am a banana” is one of the phrases I repeat when my brain is being silly and I’m trying to say something else. It’s almost as if it knew 🙂 I’m doing okay at the reading and speaking, but my spelling (especially in German) and listening is terrible. The app can be a bit fussy on the speaking as well- I’ll say something three times the exact same way, but it’ll only accept it the last time. It’s fun and hopefully I’ll get back to being able to read in French and maybe know enough German and Swedish to be able to identify it.

There’s 11 days until Johan goes to Edinburgh, the day before going to Sweden. We don’t have a care home sorted yet as apparently my respite provision ran out in June and they didn’t tell us until after the date, despite us giving them plenty of notice. Johan is getting help from the day service so hopefully we’ll get it sorted soon. He’s definitely going though, so they need to sort something out as I can’t manage alone.

The care agency keeps sending a carer we’ve asked them not to send multiple times now. She hurts me when touching me and needs so much guidance for making food that the only thing I can have done is my teeth brushed, which is a waste of an hour call. One of my main carers has told the agency not to send her multiple times, and I had one of the supervisors come out and she also told them I didn’t want to have her, but she is still coming. It’s in my care plan that the carers will make phone calls on my behalf as I can’t do it. I also still don’t have a rota or my evening calls at the right time. I think we’re going to have to put in an official complaint as my wishes are being completely ignored and they’re making me more ill. Not sure how I’m going to do it but it’s not the first time they’ve done this.

Next week will be mostly sorting everything that needs to be sorted for Johan going to Sweden, and me resting lots so I’m able to get to whatever care home it ends up being. There’s also a church service I want to go to next week but that very much depends on my health. I managed to go vote in the EU referendum, but other than that I’ve not been out since May. (The leave result really scares me, as the EU has given us at least a small amount of protection against the Tory government. I think it’s only going to get worse from here but there’s nothing I can do about it so I’m trying not to worry.) Hopefully my body will calm down and I’ll be able to get out of bed and do more soon 🙂

Danni

Life Is Better With Penguins

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

The following blog post may not make any sense.

For some reason the Edinburgh Zoo Penguin Cam doesn’t work directly with Chromecast, which meant I had to ask Johan to stream the tab when I wanted to watch and wasn’t well enough to go on my computer. I got a bit fed up with that, and decided that I wanted an Android TV stick so I could watch when I wanted. After some investigation, the Amazon Fire TV Stick seemed the best (especially as it was £5 cheaper than normal) so I bought that. I’ve added some of my own apps and it not only works for penguins, but I prefer the Twitch app as well (displays the chat on the telly) and I can sideload basically any Android app I want on there. I’m glad I bought it.

I’m just coming out of a bad patch. I was confused by it at the beginning, as I’d been doing okay and then I couldn’t get into the living room and couldn’t even have hugs as I was too ill. I was also experiencing more abdominal pain than is normal even for me. The explanation arrived on Tuesday- my period had arrived. I’m not sure how long it had been since my last one, but I didn’t cope with it very well. Luckily I seem to be nearly done with it, so I’m hoping to go back to how I was at the beginning of May again.

I’m slowly replacing some of the stuff I use daily and is becoming raggedy because of this. This week it’s been my penguin pet cushion (used to support my arm in bed and my head in my wheelchair). I’d forgotten how big and fluffy they are when new. I’ll be keeping the old one as a spare, as they’re the exact right size and shape for me (and folding them works great for supporting my head) but it’s nice to have a new clean one. The other advantage of having two is I can have one in the wash while using the other one.

Poseidon also demanded a new body as his feathers were scraggly. The super soft fluffy fleece most of my penguins and cushions are made of is great, but when they spend all their time in bed with me they’re less soft and fluffy after a while. Since I was ordering the Fire TV on Prime Now and they sold the exact baby emperor penguin body that Po has, he got lucky and I was able to get him one (penguin magic was involved). He’s now big and fluffy and is very happy.

I managed to fix my tablet! I don’t know why the camera wasn’t working in Marshmallow, but I did a factory reset and reinstalled everything and now it all works. I’m so happy as it means I can now use video chat again and take selfies when I want to.

I’m a bit scared now there’s just over 2 weeks until my 30th birthday. I’ve got no idea what I want to do for it, though if I’m well enough to go out that would be amazing. Johan keeps asking what I want for a present and I don’t know that either. My life is very different to what I thought it would be, but I’m hopeful my 30s will be better than my 20s. I hope I’ll stop being mistaken for a teenager then as well 🙂

I’ve been reading the Young Wizards series by Diane Duane recently. I’m currently partway through A Wizard of Mars. I’ve got the New Millennium editions on ebook, which I’m glad about as in A Wizard Alone there’s an autistic character that was portrayed really badly in the original book, but in the new edition it’s actually really good and he chooses to remain autistic when given the option of changing himself. I’d read a couple of books in the series years ago in the library, but it’s really good to be able to read them all in order. Dairine is probably my favourite character, and displays many autistic traits herself (though these aren’t identified as such in the series). The world has been a great one to escape into and I’m trying not to go too quickly as I think I’m going to be annoyed when I run out of books.

Feeling really bleh and drained now, so I think more rest is needed. Until I’m doing better, I think it’s time for more penguins. Penguins make everything better.

Danni

Blogging Against Disablism Day 2016: What I Want To See

Autism, Blogging Against Disablism Day, Danni, Mental Health, Physical Disability

This is a post for Blogging Against Disablism Day 2016. Please visit the website to see the other posts. It’s a day late as it’s my second attempt at a post (thanks brain fog).

These are things I want to see. It is not exhaustive.

I want to see more people like me in fiction, as normal characters. Disabled, different, maybe chronically ill, but that being only part of what the character is about.

I want to see more progress in making things accessible for more disabled people. More ramps, lifts, alternative formats for information. More changing places toilets (toilets with a hoist, adult changing bench, plenty of room for a wheelchair and carers and other facilities for severely disabled people). Less blocking access, displays making it impossible to pass in a wheelchair, less unnecessary noise and strobe lights.

I want to see disabled people accepted for who they are. Not used as inspiration porn or pitied. Disability is a normal part of life so should be treated as such.

I want less overt and covert discrimination against disabled people. Less refusal to make reasonable adjustments. Less making disabled people jump through hoops non-disabled people don’t have to do.

I want to see more access information provided on websites, and the websites themselves to be accessible. I want that information to be easy to find, not requiring looking through layers of menus to discover.

I want people to see disability equipment to be seen for what they are, tools that enable people to do what they want easier (or at all). Wheelchairs and scooters are awesome and allow so many people to do more than they otherwise could.

I want people to be valued for who they are, not what they’re able to do. We all deserve a full, peaceful, dignified life, making our own choices as much as able.

I want variable disabilities to be understood better. Just because someone can do something at one time, that doesn’t mean they can do it the next time, or in different circumstances, or more than once.

I want the harassment of disabled people to end, especially by governments and the media. I want benefits to be easier and quicker to claim, without the presumption that we’re all frauds. We’re not to blame for the financial crisis.

I want to see disabled people living where they want, with the help they need to do so. I want to see hospitals only used when absolutely required and for the shortest period that’s needed. I want carers to receive the help they need to care for their loved ones if they want to.

I want people to be seen as individuals. We all have our own life experiences, likes, dislikes and thoughts. We’re not just a collection of diagnoses.

I want to see a nicer, more equal world. I believe it’s possible.

Danni

How Did It Get to April?

Autism, Blizzard, Computers, Danni, Diablo 3, Gaming, M.E., Mental Health, Penguins!, Physical Disability

The problem with sleeping a lot and randomly is that time somehow disappears so one day it’s February and then suddenly it’s the middle of April.

I’ve been very up and down the last few weeks. Still got issues with the care agency. ESA form is in so I’m waiting to hear if I’m still in the support group, and if so for how long. Some time spent on my computer but nowhere near as much as I’d like, and not at all for about two weeks until this week. I’ve not been in my chair much either, though did go into the living room for a bit and outside for 5 minutes to try and spot the International Space Station (and failed due to clouds) at the beginning of the month. I’m hoping to be able to go properly out again soon. Esther has moved out, as our flat was just too small for the three of us, especially with my health being affected by everything (she was a great flatmate, and her new place is better for work so I’m hoping it goes well for her).

Easter was good. Eggs and bunnies were bought and eaten. I managed to watch the church service on the telly which was awesome as I miss going to church. I’ve looked into inclusive church services that happen at a time that I can actually get to them (there’s no chance of me getting anywhere for 10am, especially on a Sunday) and I’ve found one that looks really promising, so when I have the spoons I’m hoping to email them about the stuff I need to know (how accessible is it, whether there’s a set routine or service I can learn and follow, how noisy it gets). Emails are hard even when I know what I want to say.

April is also autism awareness/acceptance month. I’ve done pretty much nothing for it, other than speak to my GP for help with my anxiety and ways of coping before I end up in meltdown (unfortunately happening all too regularly due to care agency stuff, like being yelled at by a care worker, or someone I don’t know letting themselves into our flat and into my bedroom with no notice, name or ID- the first I knew of it was when I rolled over and she was there, as I had earplugs in). I think this was the first time I’d told a doctor about my meltdowns, as when they happened once a year it wasn’t that important for them to know. It’s also in my care plan now, along with what to do (leave me alone and if Johan is in, get him- it might be scary seeing me hit or bite myself but I’m not likely to hurt myself too badly and the worst thing you can do is talk to me or try and touch me). Unfortunately most of my coping/prevention methods involve things I can’t do due to being so ill with ME, so I’m not sure what to do, especially when our ways of trying to prevent them (like telling the care agency not to use the key safe except for care calls, and to contact us in advance before turning up) are being ignored.

My GP was awesome as always. She seemed to understand that a meltdown is different from a panic attack (though I still get plenty of them, normally at night when the neighbours are arguing). She’s not got many ideas yet, but she’s going to see if there’s someone who understands autism who may be able to help me come up with some coping strategies. I don’t get why I’m so nervous about seeing her when she’s always so nice and tries to help, even though I’m not the easiest person in the world to deal with (yay neurological illness with no currently known effective treatment and communication difficulties due to autism!). She even sorted out an antihistamine prescription for Johan even though it was my appointment.

I’m still getting used to the side effects of cetirizine I’m taking for hay fever (even though there are no leaves on my tree yet there’s definitely pollen around). Mostly extra drowsiness and dopiness, though it might also be why I’m getting worse headaches than normal. Luckily it’s nothing that I can’t cope with and it’s worth it so my eyes aren’t as sore and itchy.

I got selected from the waitlist to buy Here Active Listening ear buds. They work well for what I want them for (turn down certain noises while still being able to hear what I want, such as turning down background noise while still being able to hear speech) but only when I can actually get them working with my tablet. Unfortunately the left one doesn’t seem to like turning on every time and I’ve had difficulties getting it to connect to my bluetooth, but I’m hoping that it’s just teething issues and they’ll work better soon.

I’ve also recently updated my tablet to Android Marshmallow from Lollipop. While doing so I took the time to encrypt it, so it’s now more secure (though I’ve also turned on smart lock so when I’m at home with it then it’ll automatically stay unlocked, as typing in the password every time would be too much for me). The only bug I’ve found is that the IR Blaster doesn’t seem to be working, which means I can no longer control my telly from my tablet. When I’m not able to press the buttons on the remote myself I’m needing Johan to do it for me. Hopefully that’ll be fixed soon, or I’ll have to look into a touchscreen remote control.

I’m getting excited for Overwatch coming out next month. I’m hoping I’ll be able to get on my computer to play it, as I preordered it. I’m probably going to be terrible but it looks fun anyhow. Today I managed to get my Diablo Wizard to level 70, which only took a couple of years. Hopefully I won’t take as long with my next character 😛

I’ve been enjoying watching the Penguin Cam at Edinburgh Zoo, which shows the gentoo penguins and their stone nests. Watching the penguins mate has been interesting, especially as they keep being interrupted by other penguins wanting to steal their stones while they’re doing so. There are quite a few eggs now and hopefully in the next month or so there will be some chicks. Until then there’s lots of stone stealing from nests, and occasionally the king penguins invade, especially at feeding time.

Danni

Stickman Communications: When Brain Fog Clouds My Words

Autism, Danni, Important Stuff, M.E., Physical Disability, Real Life

I’ve been wanting to blog about the communication issues I’m having, but not been able to. Luckily* I’m not the only one who has these problems, so I can just link to Hannah’s blog post about it instead. This describes what I experience pretty well.

http://stickmancommunications.blogspot.co.uk/2016/02/when-brain-fog-clouds-my-words.html

*I wish no-one had to experience this stuff, but I do feel a bit better knowing I’m not the only one.