Category: Autism

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

Preparing For An Outing

Autism, Computers, Danni, Gaming, Important Stuff, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Tomorrow morning I’m going out properly for the first time in quite a while. I have a hospital appointment to see my consultant at my GP’s request. It’s not at my local hospital, so it’ll be the furthest I’ve been in well over a year (it’s in Newcastle so not excessively far, luckily). As I’m not currently well enough to sit in my wheelchair at all (unfortunately I’m yet to have a repeat of the good days last month) I’m going by stretcher.

This is a big event, and requires a lot of preparation. I’ve selected a pair of pyjamas that are fancy enough to be worn as day clothes, yet are still comfortable. With them I’ll be wearing my arm warmers, as they’re short sleeved and my arms get cold (and in the event I need a blood test, they’re easy to take off). I’ll also be wearing some warm bed socks in an attempt to stop my feet freezing. I’ll need my tablet in case I lose speech and to communicate with the outside world if I’m up to it, and my phone for internet.

To accommodate my sensitivities, I’ll be taking my sunglasses, eye mask, ear plugs and ear defenders. Since too much light and noise make me much more ill I can’t be too careful there (hospitals are not known for being restful places so I try and avoid going there when possible). I’ve not found a decent way to deal with my sensitivity to smell so I’ll be taking an antiemetic and mints and hoping it isn’t too bad. Spare pads and wipes will come along just in case, and I’ll need my Hydrant to prevent dehydration. I’ve got a couple of blankets to try and deal with my temperature fluctuations, and will have a cushion or two to try and make it as comfortable as possible. I’ll also have my appointment letter, a short explanation of my communication needs/what to do in an emergency, and a list of important things to talk to the doctor about.

In a strange way, I’m looking forward to it. Getting out of bed is so rare for me that even going to the hospital is exciting. There’s a pretty good chance it’s going to make me crash afterwards (I’m currently so touch sensitive that even hugs make me more ill, and movement makes me feel horrendous) but we’re planning for that. I have lots of milkshakes and stuff in as my chewing is dodgy already and the easier ways to consume calories I have, the better. Seeing outside my bedroom will be fun (assuming I’m well enough to wear my sunglasses rather than needing my eyemask- otherwise I’ll just have to listen :P).

Since I last blogged I’ve seen the district nurse, who was the one to recommend getting stretcher transport when we explained my problems with trying to go by wheelchair, the CFS team who have shown Johan how to prevent my legs from unstraightening when I’m not well enough to straighten them myself and were reassuring me about stuff, the dietician who has prescribed some milk based supplements because of my new intolerance to heavy juice drinks (can have squash but not smoothies, proper fruit juice, fruit flavoured milkshakes or fortijuice) and my eating being really poor again, and the social worker who was doing a care review and she’s going to pass on our concerns for us (I’ve not been well enough to email the agency) and contact the doctor about getting the supplements. All those visits have meant I’m not doing as well as I was before them, but I’m not that bad for me.

Johan went to Manchester to see a ballet with Vicky, and my sister Becca came over to look after me, which was good. She’s also here now, originally to go see someone from the get back to work people (she’s in the work related activity group for ESA- they are doing the work related activity) and also just generally helping us out a bit. The break helped Johan a lot and he’s overall been more positive and able to cope. His trial for the raid team in World of Warcraft went well, so he’s now a permanent member and they’ve since got Siegecrafter Blackfuse Heroic down in 25 man, so there’s only two bosses left for them to kill. He’s really enjoying it and it’s good for him to have something to focus on There’s another discipline priest on the raid team that is his main competition, and he’s occasionally been beating him while less geared so that has made him very happy 🙂

I’ve been playing quite a bit of WoW, mostly doing my daily cooldowns, Timeless Isle dailies on Danni and levelling my lowbies. I invited Becca via Recruit a Friend and we’re levelling some characters together- she’s a warrior and I’m a hunter. I don’t know either class so that’s been interesting 🙂 For some reason I’ve not been able to watch television, even easy things like My Little Pony- my brain just can’t process it right now. I watched a little of the figure skating in the Olympics but I was absolutely exhausted afterwards, in a way I don’t get when I’m playing WoW. Danni is weird 😛 I’m so glad I’m still able to get on my computer and play WoW though, as it’s helping me cope with everything, especially since my digestive system really hates me now (recently it’s been taking between 12-36 hours for food to leave my stomach, which I know because I keep bringing it back up and it’s identifiable).

If I don’t blog for a bit then it’ll be because I’m recovering from the hospital appointment. I’m hoping it won’t take too long though as I have so many things I want to blog about as soon as I can 😀

Danni

An Idea

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

So I had those really good days, and got to go outside. Then I had not so good days. At one point I thought I might be relapsing again but luckily it didn’t get that far. Still, I had some good days and I’m happy about them. Since then I’ve watched the Doctor Who Christmas episode (it was weird, but I think I liked it), watched several episodes of My Little Pony, watched some of the films I recorded over Christmas, and have read a couple of ebooks. Most of them with very little concentration but yay!

I’ve also been playing World of Warcraft a bit, doing dailies on my level 90s and levelling my Shaman and Monk. My WoW guild has swapped to 25 man raiding after absorbing some of the members of the previous best guild on the server that died not long ago, and is now 11/14 heroic 10 and 25 man. I’m not raiding (not well enough for the flex raids at the moment- I wouldn’t attempt heroic with how bad my brain is even at my current best) but Johan is currently on trial for a spot as a disc priest. He’s been raiding since the swap to 25 man and he’s really enjoying being at the more top end of play. There’s another disc priest in the guild (who is really good) and Johan isn’t doing too bad in comparison, especially considering he’s less well geared. He says he’s improved a lot this week over last, and I’m really hoping he gets a permanent spot. It took a lot of persuading from several raid members to convince him to apply, something I’ve been nagging him to do for months. Overall I’m really proud of how well the raid team is doing, as they’ve caught up to their 10 man progress in 2 weeks, and there hasn’t been much time to get to know each other and work together. I was seriously impressed with their Spoils heroic kill, as they were only giving it one attempt that night and they got it down in one 🙂

Anyway, my idea. For quite a while now I have wanted to set up a local tabletop gaming club (board/card games). It’ll be mostly for autistics, but other people would be welcome as well on the understanding that it’s an autistic safe space (I know it can’t be universally accessible to everyone but I’d want to make sure people were comfortable being autistic there, and make sure there’s somewhere quiet for those who find noise a problem). Currently Autistic North East does social meetups, but they are nearly always held in a pub and I know that’s a problem for some people (including me at times, even before I got ME). Both Johan and I like games, and want to try more, but I’m often not well enough and quite a lot of them require more than two players. My idea was to have a selection of games available, from snakes and ladders to Monopoly to Settlers of Catan and Munchkin, and people could play the games they wanted. I know I find it easier to socialise if there’s a distraction available, and if nothing else it would be fun to play games.

The main problem with my idea at the moment is I’m too ill to do anything about it. Being stuck in bed means it’s on hold. When I am well enough to do it (in the future) I’ve got quite a bit to work out and plan. I’d need to find a space to hold it (preferably central Newcastle as it’s easy to get to from most of the North East), somewhere we could meet on a regular basis without too many changes (as change is bad). It would preferably be not too public and have somewhere quiet nearby that people could go to if things are getting overwhelming. Ideally there would be some facilities for basic snacks and drinks, either to purchase or to consume if brought in. We’d need tables and chairs (how many would depend on how many people would be interested, something I’d need to find out closer to the time) and figure out the best way to provide games (either bringing in favourites from home, purchasing some especially for the group, or both). It might need some form of funding (especially for purchasing of games, and maybe for the venue space if I couldn’t find somewhere for free), and there might be some other legal stuff to consider that I’ve not discovered yet. Then it could only go ahead if people were interested, and I’d need to advertise the group to make sure local autistics know it exists. And it’s quite possible I’ll need some help with organising it.

I’ve thought quite a lot about it. I can’t plan it more than just the basic idea though. I was originally going to propose it to Autistics North East (and might still do so) but am wondering if it might work better being separate. I first thought about it after hearing of a similar group in Aberystwyth that a friend goes to and enjoys and thought it would be great for this area. That was years ago now though (I was still able to get out and about) and I’ve been sitting on it since. I’ve also been looking generally for tabletop gaming groups/events in the North East as I’d want to go when well enough and I think Johan would enjoy it, but not found anything yet. Even if they existed I’d still want to arrange an autistic friendly one if there was enough interest, but as that’s probably years away it would be good to know of an alternative until then.

So that’s my big idea- making the world a bit less sucky by playing tabletop games with other autistics. Don’t forget to be awesome 🙂

Danni

New Year Resolutions for 2014

Autism, Computers, Danni, M.E., Mental Health, Physical Disability, Real Life
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 🙂 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.  – 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.  – 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 🙂
  3. Sort out my Google Reader and Pocket.  – 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 🙂
  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 🙂

  1. Have a bath or a shower. 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 😀
  2. Sort out health book/care plan. 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. 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.  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 🙂

Danni

Merry Christmas

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

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 🙂