Important DLA/PIP Stuff

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.

http://diaryofabenefitscrounger.blogspot.com/2012/01/clause-80-amendment-50e.html

Welfare Reform Bill – Links and Stuff

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.

http://www.latentexistence.me.uk/government-filthy-tricks-subvert-parliamentary-process/

Also important is pretty much everything that’s been posted at Diary of a Benefit Scrounger and Benefit Scrounging Scum this week. Please do read.

http://benefitscroungingscum.blogspot.com/

http://diaryofabenefitscrounger.blogspot.com/

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).

Disability Products That Make My Life Easier

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

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
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
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.

Responsible Disability Reform

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.

Responsible Reform Report

Responsible Reform Press Release

Sue March in the Guardian about the report.

Thank you for your support.

My Husband, Johan

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.

To Johan. Thank you.