"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.
A lot has happened since the last time I properly blogged. I had written most of a long blog post with lots of details, but forgot to save as I went along and then the app crashed, taking my post with it. As I’m still very brain foggy, I will post just a short update now.
We had looked at a bungalow, told we could have it then told we couldn’t as it was only for over 60s. This was frustrating.
I went into a care home for respite. It went better than last time, though there were still some issues. While there I went to the shop for the first time since October and got my hair cut a lot shorter (it’s now just a bit longer than shoulder length, rather than down to my bum). Overall it was good and I’ll probably go there for my next lot of respite too.
While I was in respite Johan went to London to a disability conference thingie, went to the House of Lords, then went to Leeds to see his family for his birthday. He had a good break.
I relapsed after going into the care home. It wasn’t as bad physically as the one in December, but it was very bad cognitively.
Johan was diagnosed with autism on Wednesday, to the surprise of no-one. He’s trying to come to terms with being diagnosed (though he’s known he probably was for ages) but we’re hoping it’ll help in the long term. We’re applying for DLA to pay for a support worker to help him, as with me being more ill I can no longer do as much as I used to.
We got offered a 2 bedroom accessible flat in a central location. We accepted, and moved in on Friday. We’re not completely moved out of the old flat yet, but our lovely landlord has given us another week. New flat has a ramp to the back door (accessed from the main road, not the road the flat is on), and a roll in shower that I currently can’t use. I also can’t use the toilet as it has no back, so we’ll be asking the OT to sort it out. Once everything is sorted and we’ve decorated and put down new flooring (currently just floor boards, we’re going to have laminate) it should be good.
We went with Virgin Media for broadband, phone and telly, something I never thought I’d do. We get 50mb down/1.75mb up, which we’re enjoying a lot, as we’re getting a solid 6MB/s download even at peak times. It’ll be upgraded in a few months- the upload to 5mb in April then to 100mb down/10mb up around July. The upload speed will be about the same as our download speed was at the old flat. I wasn’t originally going to get the telly but it was cheap and the first 3 months were free, and we’ve since discovered there’s no aerial.
That is most of it, I think. We’ve got a lot to do in relation to moving, and my brain still feels like it’s operating in treacle, but hopefully things will be good from now on. I’m also hoping to be able to blog more frequently again now.
I have lots to blog about but it will be a while as I’m having another relapse which is affecting my cognitive abilities badly, to the point where I need Johan to read my post for me as I’m no longer able to understand it. Hopefully I’ll be able to write properly soon.
I am taking a minute in between panicking about things such as moving next week to ask my lovely readers to help with something.
Today the Lords are going to be debating the PIP parts of the Welfare Reform Bill. As there have been lots of problems with the consultation, and we’re worried that the changeover is going to be as messed up as that from Incapacity Benefit to ESA, we are asking that they pause the implementation of PIP for a bit so we can sort out all the problems beforehand. I’m sure you agree that this is a reasonable request.
For more information go see Sue’s blog (much betterer than mine- I suggest you follow it as well). Thank you.
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
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
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
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.