"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
Author: Danni
The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
I have wanted to blog about the Welfare Reform Bill this week, but my brain has been too foggy. The Responsible Reform report (codename Spartacus Report, Twitter hashtag #SpartacusReport) was delivered to all MPs, and the Lords. It was supported by disabled people and lots of charities and groups. In it, it proved that the government ignored and lied about the consultation it carried about about changing DLA to PIP (nearly everyone opposed it, the government said they supported it). The ESA parts of the Welfare Reform Bill have been debated in the Lords this week, and we won three amendments to make it less sucky for long term ill and disabled people, but Freud sneakily made another amendment to reverse one of these changes after most of the Lords had gone home. Latent Existence has blogged about this.
Thank you to everyone who has been involved with the Spartacus Report this week. If you know of any links that I’ve missed, let me know and I’ll add them (I know I’ve forgotten some, but my brain is too foggy to find them right now).
As I am quite disabled, finding products that make life easier and increase my independence is very important to me. I also don’t like my stuff to shout out “I’m for a disabled person!”. Obviously with things like wheelchairs and commodes that’s hard to avoid, but there are some items that make my life a lot easier without making me feel self conscious about having them.
Trabasack
Me in bed blogging, using my Trabasack as a laptray.
The Trabasack is a brilliant idea. It basically combines a laptray with a bag, and it has been really useful for me, especially since I got my tablet computer. It is very lightweight, and I use it a lot. My main use of it used to be when I went out in my wheelchair- I’d have the bag on my lap strapped around my waist (it comes with lots of different straps so you can change how it’s attached or how you wear it) and the bag holds a lot of stuff- my ASUS Eeepad Transformer, my purse, my phone, sick bags, bus pass, tissues, wipes, medication, college books and even a bottle of coke. As the top is a laptray with a grippy surface, it is really easy to use my tablet while out and about (both with and without the keyboard) and I don’t have to worry about it falling off. I also use it a lot in bed, both for my tablet (normally for typing with the keyboard) and for eating. It’s also big enough for using with a laptop, though I use my overbed table for that as the laptop is heavy. As it’s so lightweight I can manage it by myself by grabbing the handles, which increases my independence. It also looks pretty cool, and isn’t obviously a disability product, which is awesome. I’ve also been able to attach a couple of penguins to mine which is another big plus from me 🙂
I managed to break the zip on mine somehow (though it’s still usable) and the guy who created it, Duncan (@trabasack on Twitter) has offered to replace it for me. This is very kind of him and I may have cried a little, as it’s not a big company but he really cares about his customers. He’s also really friendly in general on Twitter, and I enjoy reading his tweets.
The only downside to the Trabasack is that the bag is one big bag, and there’s only a zip up pouch inside for the beanbag for the laptray (which is removable). This can make things a bit hard to find in it, but I’ve solved this issue by taking a small zip bag I had (purple, of course) and putting the smaller items such as bus pass, phone, sick bags, medication and things in that. I store the extra straps it comes with in the pouch with the beanbag in case I ever want to use some of them. It is only a very small downside though, and I recommend it as both a wheelchair bag and a bag for people who use tablets or things on the go. It basically means you can have a table with you everywhere (and if you’re a wheelchair user, you have your own chair as well, which is cool :P).
You can get the Trabasack from Amazon UK, or directly from trabasack.co.uk. It may look expensive for a bag but it’s definitely worth it.
The Hydrant
The Hydrant
This is another of those brilliant ideas. Basically, the Hydrant is a water bottle with a tube, so instead of having to lift the bottle you just need to bit on the end of the tube and suck to be able to get a drink. For someone who is very weak and has limited contol over their hands, it’s awesome. It holds 1 litre, which means Johan (or any carer) doesn’t need to fill it up that often and then I’m able to drink independently. It has a clip to attach it to the back of a chair, bed, wheelchair or similar, and that also works as a large handle to fit your hand through. The bite valve is very simple but stops water leaking out (unless you sit or lie on it, which I do far too often :P). I get a very dry mouth from my medication so being able to have a drink whenever I want is very important. There is also a sports cap available for it that you can use if you don’t need the tube, but just want a bottle that attaches to a chair or pram (or just want a bigger handle so it’s easier to use).
The only downsides to the Hydrant are it’s not suitable for hot drinks (warm and cold are fine, even fizzy ones) and I find I can’t manage to take tablets with it, though that’s probably because I struggle with taking tablets anyway and can’t coordinate the sucking and swallowing at the same time. Otherwise it’s been brilliant, and Johan is able to tell when it needs refilling by the sound of me sucking on it (it sounds like an empty drink with a straw).
You can get the Hydrant from hydrateforhealth.co.uk. I really recommend it to Spoonies, especially those who are bedbound or use wheelchairs.
The Litecup
The Litecup
This isn’t advertised at all as a disability related item, but I’ve found it useful anyway. The Litecup is a cup with a non-spill top, and a little light in the bottom that comes on when it’s dark. The valve on the top goes all the way around, so you can drink from anywhere. The light means you can find it in the middle of the night without having to hunt blindly for it. I like it because it doesn’t spill, I can use it while lying flat in bed (I often drink from it upside down resting on my nose and mouth, just stabilising it with my hands) and unlike the Hydrant, I can take my medication with it as it’s more like drinking from a normal cup. It doesn’t have any handles but it’s easy to use with two hands, and it being non-spill is brilliant if you’re as clumsy as me and means I don’t end up with half my drink down my front. It’s not watertight so you don’t want to be putting it filled in a bag, but it’s good for not spilling otherwise. I’ve not tried it with a hot drink but I think it should be okay. It also comes in purple, which is a massive plus!
The downsides to the Litecup are that it has no handles, and it not being watertight so you can’t have it filled in a bag. It’s also a little tricky to clean, though can be dishwashed. The top with the valve comes apart, but we’ve found if you do that it’s hard to line the valve up properly again, so it’s harder to drink from one side but easier on another. I also can’t use it independently when my hands are weak or being stupid, but since I mostly use it for drinking from when taking medication and I need Johan to help with with that if hands are being silly then that’s not a major problem.
I bought my Litecup from Amazon UK (and spare light bottoms are available from there too, in either blue or red). The website is at litecup.com.
These are not the only products I use to help me, but what they all have in common is that they don’t look explicitly for disabled people, and I’ve found them very useful. I also use all of them daily, including when bedbound.
In a long ramble a few days ago, I mentioned how the government is planning on changing disability benefits which will make things really bad and mean that seriously ill and disabled people won’t get the help they need. Turns out the government have also been not telling the truth about the consulting and stuff that they did, and so ordinary disabled people funded research (carried out by other ordinary disabled people) into the government’s plans and things.
As the plans are going to affect lots of people who could really do without the extra stress of worrying if they’re going to lose money, become homeless, lose carers, lose their jobs because they can’t afford to get there, it’s important that as many people as possible read and distribute the linked press release and report. For my part, I’ve emailed it to my MP Dave Anderson (Blaydon constituency) so I’ll report back as soon as I hear from him. I’ll also link to more informative and better written blog posts as I find them.
I am writing this while lying in bed in the early hours of Sunday morning, while Johan is sitting at his computer on the other side of the living room playing World of Warcraft. We are both comfortable and happy.
I feel very lucky to have met Johan. We are very similar in a lot of ways, and this means we understand each other in a way that most other people don’t. We often think the same things, which results in us saying exactly the same thing at the same time. We have similar interests.
I met Johan in Second Life, introduced by a mutual friend, Alexa. Alexa and Johan were best friends in Second LIfe, and I was roleplaying as Alexa’s daughter. At the time of meeting, Alexa and Johan decided to try being boyfriend and girlfriend, which didn’t work out. They remained very good friends though.
A few years ago, there was a meeting in London of Plurkers and Second Lifers, which we both attended. We immediately got on as well in real life as in Second Life, and everyone there (except Johan) could see that there was something between us. We met up a few times in London, often with other Second Life friends, and eventually I asked him out (very clumsily) over lunch in the Science Museum. He said yes, and told me that he’d been too shy to ask me out. Most of our friends told us they knew it would happen 😛
After Johan had spent a year at university, he came to my flat for a short holiday, and never left. Once we’d decided he was staying long term, we went and declared everything to the benefits agencies as required, and he brought his computer and not much else up with him from where he was staying in Hull. This was partially because I wasn’t coping with living alone (Vicky had moved out at this point to be closer to her work) and we were worried I would have to move back into less independent acommodation, but also because we enjoyed being together and Johan felt at home here. I soon discovered that Johan’s self care skills weren’t exactly the greatest, but I was able to help him with them as he was able to help me with my mental health problems. People started asking us when we’d be getting married, and while out with my brother at the MetroCentre we mutually agreed that getting married would be a good thing to do.
It was rough while my mental health was bad, especially when I became severely depressed late 2009/early 2010. Johan helped me though, and eventually I came out of it. Having a stable home with someone I loved was one of the bigger factors in my recovery from depression. Also by this point I had M.E. but wasn’t aware of it (I was putting my symptoms down to depression) and Johan helped me with dealing with the gradual loss of ability as it got worse, including pushing me in a wheelchair for the first time while on holiday in Edinburgh.
We got married in August 2010, inviting only very close friends as we wanted to keep it small. We both don’t deal well with crowds of people, and the tiny wedding we had followed by playing Rock Band and eating pizza in our flat with friends was perfect for us. We also enjoyed our honeymoon in Durham.
One of the reasons I suspect Johan is on the autism spectrum is because he is so similar to me. He gets anxious about many of the same things, thinks in a similar, logical way, and doesn’t display emotions in a typical way. Because we are so similar, we’re very good at reading each other, so we can tell when the other person is happy, sad, anxious or frustrated, even when it isn’t obvious to other people. Unfortunately this also means that are emotions tend to feed into each other, so if one of us is upset (especially if it’s because we think we’ve upset the other) both of us will become very upset and often results in us both having meltdowns. Luckily though it blows over very quickly and everything is back to normal within a short time.
Being so similar also means we know how to comfort each other. Johan will mention penguins to me if I’m sad, as that normally makes me happy. I’ll offer him a hug if he’s sad, as that makes him feel better. We can deal with each other’s physical contact even though we don’t normally like it, because we love each other so much and know how to do it without it hurting (or for me, hurting too much).
We also both like being silly. We can be serious when we need to be, but if we don’t need to be then silliness is the norm for us. When I mentioned to Johan I was writing this blog post, saying it was about how I love him and he loves me, he followed it up with “we’re best friends as friends can be”- a rhyme from Barney, of all things 😛 We feel so comfortable with each other that stuff like that is how we like to interact, and normally results in smiling and giggling.
Johan has also been exceptionally understanding about my health problems, first my depression and then my M.E. Sometimes he can be a bit overprotective, but it’s because he doesn’t want to see me any more ill. He’s done way more for me than should be expected from anyone, and he does it because he wants to, not because he has to. In return, I try and help him with his mental health problems, and help him with prompting and things for his self care needs. We both find it a lot easier to do things for the other rather than for ourselves.
I love Johan. He loves me. We’re very happy together, and very compatible. We both want to spend the rest of our lives together. I’m grateful to Alexa for introducing us, and one day we’ll go over to where she lives to meet her in person. I’m sure there’s lots of other things I could mention, but I just wanted to write this about the most amazing man I’ve ever met.
I am happy. Considering there was a 12 year period where being happy was exceptionally difficult, being able to say that on a near daily basis is awesome. There are lots of things that make me happy.
I like penguins. Seeing penguins makes me smile- it’s very difficult for me to be sad or upset for long when I am around and aware of penguins. When I was depressed I wasn’t able to be properly aware of penguins, so they couldn’t make me as happy as they do now. My living room is covered in penguins, and everytime I spot one I get a rush of happiness in my brain.
I like the colour purple. Purple is nice and calming and reassuring. I also have quite a lot of purple, as it’s my favourite colour. I covered my wheelchair in purple fabric. When we move house my bedroom is going to be purple (and possibly the living room as well).
I have some amazing friends. Most of them are online- I talk to them on Twitter, Facebook and AYME. These are people who make me feel good about myself, which in turn makes me feel happy. I have reduced my contact with people who get me down, which has also helped. Funnily enough, a lot of my friends have depression or other mental health problems, but because they are so nice and kind even with their illnesses they are a positive part of my life rather than a negative.
Reading blogs and being in touch with people on Facebook and Twitter helped me recover from my depression. Being able to read about other people’s experiences and seeing that I wasn’t alone made it so much easier to get out of the hell I was in. Blogging myself (on my old blog) also helped a lot, as it let me get some of my thoughts and feelings into a way that I could understand them. Being on the right medication also helped, as did having doctors (GP and psychiatrist) who listened to me, accepted me as I was, and stopped trying to force me into boxes that I don’t fit into.
Being diagnosed with autism was also a major step in the right direction for me. I had an explanation for why I was different to other people. I came across autistic adults on the internet who were able to teach me mostly through example that being autistic is okay. Accepting my autism made my life so much easier. I’d especially like to thank Kassiane S., Amanda B., Laura T., Laura R. and those who used to go to the Autistic Liberation Front meetings in Second Life for chatting to me and helping me through the period before and during diagnosis, and while my life was turned upside down.
My old social worker Balamory was also a massive help in my quest to recover from depression. She noticed my autistic traits and badgered lots of people on my behalf, helped me find acceptable housing when I needed it, and also found and helped me attend Interface, the autism unit I used to go to. I wish I had a way of letting you know how far I’ve come since I first met you.
Interface was a massive help. It was my first experience of specialist education, and it allowed me to be successful at college for the first time. There were lots of skills I learnt there that I needed to know to help my independence, both taught on the curriculum and learnt just by being there and with the help of the staff, especially my keyworker Louise. Being able to attend such a brilliant facility just after receiving my diagnosis and having a safe space to just be myself made college doable, even while I was still very mentally ill. Without Louise I don’t think I’d be where I am now.
Learning to be myself again was probably the biggest thing that has made me happy. I spent many years trying to fit in with everyone else, and not quite succeeding. Learning that I was autistic, that being autistic is okay, that being different is okay was one of the best lessons I could have learnt. Once I stopped surpressing my need to move (rocking, flapping, pacing, bouncing) in safe places (at home and in Interface) and then gradually becoming less concerned about doing some of the less extreme movements when out in public meant that I could control my anxiety and actually manage with stuff without it becoming overwhelming. Listening to music, wearing ear defenders, wearing tinted glasses, carrying a pen, my stones and a penguin of some kind with me everywhere are all things that don’t affect anyone but help me to deal with things. Rocking and flapping may look a bit odd, but they don’t hurt anyone and are much better than biting myself or melting down (which sometimes results in head banging).
At home I’m free to not do anything to try and fit in. I play with language- making up words, messing with grammar, talk about random things when they pop into my head. Colin, Vicky and Johan know this very well 🙂 I also do some of the stuff that people are less understanding about, such as having something in my mouth a lot of the time (sucking on things reduces my anxiety and helps me concentrate), humming and random singing, making noises with hands and fingers, wrapping myself tightly in my quilt, piling pillows on top of myself. I also ignore “age appropriateness” when at home, so can go from discussing politics or science or other “grown up” topics to talking in very simplified language about wanting penguins or jelly within seconds. I also play with my wooden blocks, and can spend hours just looking at my colour changing lights or sparkly things. One of the things I want is a sensory room or area with soft flooring and nice lighting and reflective sparkly things where I can spend time just to be myself and not have to worry about things like bills or food shopping or anything else that is difficult for my brain. I was originally going to use the space behind the top of the stairs in our flat (maisonette), but since I can’t walk or manage stairs now and we’ll be moving, it’s been put on hold until we move so I can figure it out when there.
Sammie also makes me happy. As much as I wish I could have her living with me and that I could look after her myself, accepting that I wasn’t in the right place for that (before with my mental health problems, now with my M.E.) and that she is doing so well with her grandparents and is happy herself is enough to make me very happy. I have been terrible at keeping in contact with her, but I’m trying to fix that as I love her more than anyone else in the world.
Johan is just amazing. I am so lucky to have found someone who accepts me for who I am, who has similar interests, and who I love being with and spending time with. That he voluntarily took on the role of carer, both with my mental health problems and now with my physical health problems, while he was struggling himself makes him my hero. I does help that he seems to love me as much as I love him, and I would quite happily spend the rest of my life with him.
Colin and Vicky also took on the carer role for me, going way beyond what was needed as a friend. Both of them helped me to become more independent, and that also meant it was easier to learn to be happy. I will be eternally grateful to both of them for this.
All of this- learning who I was and accepting me for me, learning I wasn’t alone and that there were other people who had similar experiences or similar ways of thinking to me, making some amazing friends who help me feel good about myself, some great support from some brilliant people, having a happy daughter, being in a loving relationship, feeling safe and secure and able to be me, means I was able to recover from depression and be happy. And I like it.
