Month: November 2012

Danni

Politics and Bad News

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

Strong emotions (both positive and negative) are exhausting for me. By exhausting, I mean I get very weak, I get worse brain fog, and I need to rest immediately. Too much means I get M.E payback. As part of being autistic, I experience most emotions very strongly, and it can be harder for me to process them.

When I realised that getting emotional was affecting my health, I decided to do something about it. Negative emotions affect me more than positive, especially sadness, anger and anxiety. I used to follow the news constantly- watching 24 hour news broadcasts, being on news websites, following news on Twitter and Facebook. Since bad news makes me feel bad emotions, I started limiting how much I saw. I don’t ignore it completely, but I try to only read headlines and not get as involved as I used to. This was hard as I care about what I read, but it has helped.

Due to our current government, most political discussions are also full of bad news (to be fair, this was also the case with the previous government). I used to be very interested in politics, and was quite active for a while. Political discussions are tiring even if they aren’t emotional, as they require remembering facts, being able to explain opinions clearly, and being able to understand what the other person/people are saying and remember it long enough to reply. All things that are difficult to impossible for me now. So I’m mostly staying out of politics and political things. This is difficult as I still have strong feelings, especially regarding disability rights, and welfare benefits, but if I get too involved it makes me ill.

Many of my friends, especially on Twitter, are very active politically. A lot of them are also disabled, and quite a lot are also ill with fatigue problems. I admire them so much for what they’re able to do, and so wish I could help them out. I can do the very basics- sign petitions, retweet stuff, very occasionally blog about things, but anything more and my health has to come first. It makes me feel guilty but I’m trying to get over that.

None of this is because I don’t care. It’s because I care too much, that it makes me feel such strong emotions, that I have to step back and let other people deal with things. When I improve I really want to help out, especially for disability rights and on benefit issues (as I’m reliant on benefits myself, and exceptionally grateful for them) but until then I have to just vaguely watch and try not to feel too much. It’s hard trying to not care when hearing about natural disasters or someone who can’t afford food because their benefits have been stopped, but if I care too much I get ill, and that won’t help anyone either.

What I do need to learn to do is be more clear that I can’t deal with bad news and politics and stuff, so when people direct it at me they understand why I don’t immediately do what they ask. I’m pretty sure the Spoonies especially understand that if I don’t respond to requests to retweet this, read that, it’s not because I don’t care, but some of those on Facebook especially can be posting all sorts of causes on my wall, some of which can be quite triggering to me. I’ve had to block the Causes app on Facebook which was hard, as it’s actually pretty good.

I’d never ask anyone to change their own tweets or Facebook posts for me. That would be silly. What I do need to ask is that there’s less sent directly to me (mentions or posting on my wall). If I ignore something or remove something, it’s not because I don’t care, but because I’m protecting my own health. When I’m feeling up to it, I might get involved in discussions that interest me, but I need to be in control of them and not be dragged into them (which has happened a few times, including in World of Warcraft which should be an escape from it all really).

There is an exception- if you’re a friend and want to rant at me, feel free 🙂 I can tell friends when I’m not up to conversations, and I like using energy to support my friends. I’ve had so much support from my friends recently that I’d love to be even half as supportive back. It makes such a difference to have someone understand what you’re going through.

Danni

Where’s That Fish?

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

I am currently in sleepy mode. I sleeping lots, and my sleeping pattern is completely messed up. Waking up in the evening and falling asleep again during the day. Silly. Spending all night in World of Warcraft so Danni happy.

I have lots of dailies to do in WoW now. I got to revered with Golden Lotus, which unlocked the August Celestials and Shado-Pan dailies. There was also an awesome quest chain to find some weapons and armour with interesting fights. I’ve also started trying to build up fishing with Nat Pagle, which involves fishing up three special fish once a day. They’re each meant to have a 1% drop rate in their respective areas, but one of them (Flying Tiger Gourami) took 501 catches for me to get, so the random number generator was really out to get me (there’s only a 0.65% chance of it taking so long). Hopefully it won’t take quite as many tomorrow 🙂

I also attempted raid finder for the first time this expansion. It went okay- was just the third boss of the first half, and after a few false starts we got the boss down. Healing didn’t feel too bad and mana wasn’t as bad an issue as I was expecting, but Johan was there with me so was probably making up for me not knowing what I was doing. I’m hoping to do the rest of it at some point. We’re planning on doing to guild heroics on Sunday, which should be fun 🙂

The advantage of doing so much fishing is that I got loads of fish to turn into Ironpaw Tokens 🙂 I’m trying to buy the Cooking Bell so I can get my own apprentice, and that takes 50 tokens to buy. Luckily there was also lots of cheap fish on the auction house so I’m now on 48 tokens, so hopefully I’ll get it tomorrow.

Outside of WoW, I seem to be slowly getting a bit better. I’m managing on less painkillers some of the time, and I no longer feel like I’m dying every time I move. I’m hoping to go out soon, though will need to be very careful so I don’t make myself ill. It won’t be until I’ve finished that DLA form off anyhow (I’m still waiting for Johan to do the typing- hopefully he’ll get it done either today or tomorrow).

I found an absolutely perfect pair of shoes for me on eBay, and I bought them, and Johan’s paid for them as my Christmas present! I’m so happy! They’re pink with lots of little penguins all over them, and they’re in a size 9! I never thought I’d get to have shoes with penguins on them as most women’s shoes I like don’t go up to my size, so these are brilliant. They are slip on Vans shoes, and I suspect I’ll be wearing them a lot 🙂

Happy Danni is very happy 😀

Danni

NaBloPoMo, Annika, Windows 8 and Stuff

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

I’m attempting NaBloPoMo (National Blog Posting Month) again this year. That means I’m going to try and post something everyday this month. Now, because I’m not very well I’ve decided that I’m going to try and get slightly ahead- I have a few draft posts that I’m going to try and finish so if I’m having a bad day I can just post that. I’m also undergoing Project Upgrade Annika. Annika is the name of my laptop 🙂 After realising that it was going to take a while for me to find a replacement (and there are always other things that require the money first) I’ve decided to try and make my current one work better. So far I’ve upgraded her from Windows Vista to Windows 8, and increased her RAM from 2.5GB to 4GB. Changing the operating made a massive difference to start with- she ran a lot faster and programs that she used to struggle with or be unable to run (such as World of Warcraft) now run more like they’re meant to. I’ve not really seen the benefit of the RAM increase yet as it was only done yesterday and I’ve only been using it a couple of hours for web based stuff, but it should help when I play games and things as 1GB is allocated to the graphics card now.

Windows 8 is interesting. I’m trying the Metro interface (yes, I know it’s not called that now but it is to me) and on a single screen laptop, it actually doesn’t work that badly. I have Start 8 if I need it as I bought Object Desktop for Fences and WindowBlinds and Deskscapes for my desktop, but I’m doing okay at the moment. I have noticed a bug where if I swap between the Chrome app and the desktop app, Chrome crashes when I switch back, but as I can restore the tabs it’s not a major issue and until it’s fixed I’ll just make sure anything I’m editing is saved.

Danni as a Penguin Fairy PrincessFor Halloween I dressed up as a Penguin Fairy Princess. I wore my penguin onesie, my purple tutu, and Penguin wore his matching tutu. I considered getting wings but I couldn’t figure out how to wear them in the wheelchair. Penelope borrowed Erica’s dress as she wanted to get dressed up too. I was very happy 🙂

We only got one trick or treater, so now I have a bucket of chocolates to eat (with Johan to help). This isn’t going to be a big hardship, as they’re all chocolates I like. I’m trying to convince Johan to watch The Nightmare Before Christmas as it’s an awesome film, but he’s being stubborn and saying no.

I have discovered I can manage watching Star Trek: Voyager! It helps that I’ve seen it all before so I know what happens and it’s easier to follow. Johan doesn’t want to watch it as he’s scared he’ll get obsessed, as he’s watched clips on YouTube and seen why I like it so much. This makes me very happy.

My DLA form is getting there. I hope to get it all completed and sent off next week. Johan has some typing up to do and I’ve got some supporting evidence to copy and send, but hopefully if they read the form I should be okay. I’m going to pay to send it special delivery so they can’t claim they’ve not received it, and will make sure I keep copies on my computer (I’m going to be typing all the answers anyway but will have it all together). I found my first DLA form on my computer the other day- I think the older form was actually a bit easier, as they had a separate category for falls and blackouts, and a lot of the boxes were more flexible.

Johan had his flu jab yesterday. He got diazepam off the doctor in advance, and managed it without too much panicking from what he told me. I was asleep as I slept 15 1/2 hours yesterday- longer than I was expecting but I really needed it. He fell asleep when he got home, but when he woke up again he didn’t have any anxiety and felt up to going to the local pizza shop for our tea (he didn’t trust himself to cook). It seemed to have worn off when he went to sleep again this morning, but he was happy and that made me happy 🙂

I’m still spending as much time on my computer in World of Warcraft. I do dailies and I’m trying to make some money on the auction house with my tailoring. As I don’t have the high level enchants yet I’m not putting them up yet, but I’m also keeping an eye on cooking materials and food so I can make some gold with them. At the moment I’m saving my Ironpaw tokens to get a cooking bell, which means I’ll get my own cookery student. That will be fun 🙂 As I have the Tillers at Exalted now and everyone is my best friend, I have 16 farm plots, which I’m mostly using for Motes of Harmony at the moment to make Imperial Silk for my tailoring.

The daily quests I’m currently doing are The Tillers (quick and easy and fun), The Anglers (easy, fun and I’m only revered with them), The Klaxxi (currently revered and the Enhancements and Augmentations I have are fun) and Golden Lotus (currently honoured but within a couple of days of revered). When I get Golden Lotus to revered I think I’m going to drop Klaxxi and maybe Golden Lotus temporarily so I can concentrate on August Celestials and Shado-Pan. I will be getting all the reputations to exalted at some point, but I want to make sure I don’t overload myself with dailies and burn out. I’ve already got the Cloud Serpents to exalted as well as the Tillers, which makes me happy 🙂

Danni

Autistics Speaking Day: When Other People Don’t Get It

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

This is the third year I’ve participated in Autistics Speaking Day. My previous posts are here (2011) and here (2010) and the main website is at http://autisticsspeakingday.blogspot.co.uk/.

Being autistic causes me a lot of difficulties, but most of them aren’t related to being autistic itself; instead, they’re because other people just don’t get it. When I’m verbal (which is now a sometimes thing rather than a normally thing) I normally speak rather fluently and have a large vocabulary, so people assume that I can talk well all the time. They also assume that I’m able to understand things the way they can, and can respond the way they would. When this doesn’t happen (because I’m autistic and have M.E. and my verbal communication is variable) they assume this is because I don’t want to, rather than because I can’t.

I make a point of telling people (or having Johan tell people) who need to know (carers, social workers, doctors, nurses, them sort of people) that I have communication difficulties and that sometimes I may not be able to understand or respond in a typical way. I tell them that this is because I’m autistic and that M.E. complicates it. Some people understand, and know that it means if I’m not responding normally, or need to type, or need to be left alone as I can’t cope that it’s okay, and give me extra time or ask Johan or reword questions. Those people (often carers, and a couple of nurses) are awesome and we likes them very much 🙂 Some others don’t understand initially, but then ask questions and then figure it out. Those people are also awesome, as they’re willing to take the time to learn. Some of those people have told me it’s helped them in other situations, so it’s good for all of us. We likes them very much 🙂

Then there’s the people who for whatever reason, decide they know better. When I have difficulties with communicating (or dealing with sensory stuff, or understanding things) instead of remembering that we’ve told them this can happen, or asking us questions to sort things out, they assume I’m doing it on purpose, or it’s because of psychological reasons and that yelling at me or belittling me will help. Those people we don’t like very much. Some of them have apologised when either Johan or I have been able to explain what happened, but others (often but not always doctors) are certain we’re mistaken and they have it right. They make many problems.

So, what can people do? If you’re told that someone is autistic, or they have communication difficulties (even if only occasionally), believe them. If you don’t understand how you can help them, ask. Autistic people and their carers will often have developed strategies to deal with their difficulties, and will often be able to tell you how best to communicate. If they ask to tell you at another time, or to get back to you, accept that and don’t push it, because a lot of autistic people have anxiety or other issues that mean they might struggle with answering questions spontaneously, and being pushed can make their anxiety or their communication issues worse.

Also, don’t make assumptions on ability based on how they are at any one time. Both Johan and I find that our ability to do things varies from day to day and from hour to hour, and that something we might accomplish with ease at one time may be very difficult or impossible at another time. This is quite normal for autistic people, and doesn’t mean they’ve “regressed” or that they’re not trying hard enough or are lazy or anything like that. That can go for pretty much any activity, including speaking and communicating.

For me personally, I try to communicate verbally when I am able to. If I can’t or it’s a struggle, then I switch to typing (either on my tablet, or on my iPhone). Sometimes it can take me a long time to respond to a question, or I may forget what I’m saying/typing in the middle of it and get very lost. Sometimes I need the person speaking to repeat what they’ve said as I’ve lost track or forgotten. If my M.E, is playing up badly and I can’t cope with light at all (even with sunglasses) then I might not be able to communicate other than by making gestures or possibly spelling words out on Johan’s hand with my finger. There are times when I can’t understand anything that anyone is saying, and I get very confused and scared. If you’re trying to communicate with me, then please accept it might not go well at all times, but I really appreciate it when you try to make it easier for me.

To those of you who make an effort to understand those of us who have difficulties with communicating (or any other task for that matter), thank you.

(I’m having some severe cognitive issues at the moment, caused by the combination of autism and severe M.E, so if there are any mistakes in this blog post please let me know and I’ll correct them. Thank you 🙂 )