Saturday, March 04, 2006

How do They Sleep?

I had to appear before a panel consisting of a lawyer, a doctor and a woman whose job I have no idea about.

This is because I am now disabled and I applied for Motability which gives me a disabled badge for my car which enables me to park in disabled bays and also provides money toward travelling and free car tax. (The car is John's actually)

These people had my own doctors report, a neurologist report and a report from another consultant about my osteo arthritis of the spine(I don't know what he is called). On top of this, they had sent their own doctor to see me.

All of these professionals made it very clear that I have severe difficulty in walking, severe pain when ii do, and that I walk very slowly. Their own doctor gave a score of 3 from the hips down. 4 means one is paralysed.

This panel ignored it all and refused my application. They did however award me middle rate care which is awarded to people who cannot cook for themselves, bath themselves or dress themselves or get in and out of bed on their own!!!!!!!!

I am housebound without a car. I cannot shop for myself. I cannot get to public transport, and even if I could, it is too dangerous to use it. If I fall who will pick me up? Where would I go to anyway? I can't walk any distance without severe pain and although I force myself to, so that leg muscles don't waste, my legs soon stop working altogether thru weakness. I have recently had them give way under me 4 times in one day!

I have not felt this angry in a very long time. I don't know what to do with it. I cannot tell these people what it think. Government bureaucrats are cowards and they hide away, making decisions about other people's lives. Decisions that can make life very hard for the person they have power over. They were cowardly, they refused to tell me their decision there and then, but posted it to me a few hours later. I am sure they knew I would not keep quiet if they told me to my face.

I am astounded, as is my doctor and everyone that knows me, that these bastards did this to me.

Now I can appeal the appeal, which I am told can take years and their information on it, warns that I could lose all my benefits if I do!

I really really want to talk with these people, to their face, and tell them exactly what they have done and ask them how they can sleep at night when they care so little for the lives of others. Perhaps one day, one of them will come to understand what constant 24/7 pain is lie. What disability is like and how humiliating it is to put people through what they have put me through.

I find since then, I keep feeling like I am about to burst into tears and the I get hit by waves of rage. I am so frustrated. There is nothing I can do. I don't know what to do. Until recently, I have coped with my disabilities quite well and have been happy despite them and have learned to live with them and still do as I please, within reason. Now I feel quite desperate. My illness is not going to go away. The neuro made that clear. My spine won't heal itself and they can't heal it either.

If it were not for John, I'd be completely sunk and I only see him for 2 days a week anyway. If anything happened to him, my life would be over. That is a terrifying thought on all sorts of levels. It would be the worst thing that could happen even if I was well because I love him. Now I am dependant on him too. He does for me the things I can't do during the week. I have another friend who does what she can once a week for me.

I try not to think beyond today and am usually very successful. One day at a time has been my motto for many years. Since all this crap with Govt goons, it has been harder. I feel very afraid.(I think this may be why writing is a good idea - I didn't know I was afraid - I thought I was angry.)


sal the spider said...

This makes me so mad, I know of people who get cars fully paid for and repaired for free if they crash them and they are not anywhere near as 'disabled' as you are. I heard of one bloke who gets the whole shebang paid for , orange badge the lot and he was off doing a 'bit of casual on the building site'. I generally go for a live and let live vibe but this does really piss me off. I am so sorry for what has happened, useless emotion I know, but sent with love and a huge hug.
Sal x

Anonymous said...

I can sympatize with you, as I have back problems. I have degeneration from the base of my skull to my (well let's put it this way, my tailbone is deformed.) 2 herinated disc and 1 buldging. In the US all we have to do is have a doctor fill out a form for the disabled car plates. But what really hurts me is that my children don't believe me and tell me I'm not doing enough to help myself. I have days that my legs are so weak and rubbery that I don't dare walk to the bathroom, so I have to use a wheelchair. I guess part of this is my fault for hiding my condition from my children for years. Every time I go to visit them, I'm so doped up on pain killers that I hardly know what I'm doing. And that is no way to live. Hang in there guy. I have the days when I get so depressed I just sleep the day away and go on to the next. I keep hoping that some day soon they will find a way for people like us to cope and live a productive life again. I'm a work-aholic and disability and I don't get along, but so far in the last 10 years I haven't found a job that meets my requirements. But I keep looking anyway.
Kirksville, MO USA

dottyspots said...

It seems to be a postcode lottery. I claim DLA for my son, but I know of other parents who have really had difficulty in claiming - the whole system is very bizarre!

Desperate Mousewife said...

That stinks, Colin. I'm very sorry it has happened to you. I know someone who receives DLA at the lower amount for her alleged disability which is absolute bosh as there's nothing she cannot do. In fact, her continuing with her claim ended our twenty year friendship, I felt so angry about it. Would you consider an appeal? Some areas seem to refuse every claim, however well deserved, on the first attempt.

craftyknits said...

Hi Colin, sorry to hear about your problem I did not have to do all the things you have done to have mine, I just had a doctor visit me at home and he informed that I met the criteria and I recieved a letter stating that I have middle care and high mobility, as for getting around I have the blue badge for which I applied to my local council, I have the free car tax on our car, but was informed that if my husband was unavailable to take me where I needed to go then my mobility money would cover taxi fares.
Regarding your problem, have you thought of taking a letter from your doctor plus your x-rays(if you can get them)and take them to your local MP so he can bring it up in parliment. To show them that the sharletons that are about are ruining the system for us genuine cases.

Beverley said...

Colin, this is terrible news. I wish I could do something to make things better. Can you contact your local Citizens Advice and get someone to come out to see you and give you some advice. I cannot believe (and I am not saying I don't believe what you have said), but I cannot believe that they are allowed to say if you appeal you might loose all your benefits, that is bullying, and surely in this day and age cannot be allowed to happen. I know some areas are better than others, but this is ridiculous, makes me mad so I can completely understand how you feel.

FugueStateKnits said...

Hey Colin! I say - F'em! appeal! and maybe go to the papers about it.
I cannot STAND bullies!!!!

Mama Sunshine said...

Oh dear Colin - you really do have some real jobs worths down there! i didn't have any of that hassle to get my motability sorted out - the occupational therapist and social worker that were visiting me at the time signed the necessary bits of the forms and sent them off and hey presto I had the higher rate mobility allownce and the higher rate carers allowance as well - it was all so easy and quick and not at all like the terrible experience you have had there. My problem is joint hypermobility so i dislocate all the time - it is a hereditary condition and sadly I have passed it on to 5 of my 6 kids but we are all very cheerful about it and learn to find ways to help one another 'pop' joints back into place! :) You stick in there - you are definitely entitled to the mobility allowance and the higher rate care allownce as well - I will keep watching your Blog to see if you get it sorted - good luck my dear boy! :)

Flossie said...

I share Sal's sentiment Colin. I wish I could do something to help. I think you should appeal the decision, especially as so many people would stand up for you, your Doctor, etc.

Sending a big hug. x

Anonymous said...

Don't they have adapted transport where you live? Here they have these mini-bus things that transport disabled people. Rather than having set routes like regular public transport, you call them when you need to go somewhere and they pick you up. Sort of like a taxi service except it takes longer. And the drivers are trained & know how to handle problems such as falls.

Sharon J said...

I have motability but luckily my doctor's report was accepted without further ado. What really bothers me with the whole system though, is that if you can walk further than 100 yards without severe discomfort, you can't get it. So let's say the nearest bus-stop, as in my case, is about 600 yards away. What do you do? Hobble along for the 120 yards you can manage and hope somebody picks you up and takes you back home? Because there isn't much other choice, is there? You still wouldn't be able to catch the bus and having already walked your quota, you wouldn't have much hope of getting back home on your own, either.

~Sharon J (feeling a blog post coming on...)

colin said...

I have no idea waht they were playing at. I have applied for a staement of reasons to see if that makes any sense.
If I don't go somewhere in the car, I don't go. I cannot even get to the bus/train let alone get on one!

Anonymous said...

I am disabled live in the middle of nowhere and refuse to apply in case I get refused, one day my husband will come home and I will have thought it was a really great idea to go downstairs- except it may not be as I will have fallen again. I loathe the idea of being totally disabled, not able to get to a computer etc but it will come, so I`ll choose a nice day and die.

Sharon J said...

I'm in the same position, Colin, so I really do sympathise, even though I have the higher rate of mobility. Without a car I'd be completely isolated as the bus stop is too far for me to walk to, and even if I could catch the bus, I'm prone to vomit with little notice (sorry if that's too graphic) which doesn't generally go down well with either fellow passengers or the driver. But that wasn't taken into consideration at all, as wasn't the amount of medical supplies I have to take with me if I go away for a night.

Keep on at them, Colin. I had a hell of a time getting DLA for my son (who was born with severe learning difficulties - what we once called mentally retarded - but we lived in a different area then so there's obviously huge difference in the way you're treated depending on where you live.

~Sharon xx