Saturday, 8 January 2011

Little Knocks

You would think I am used to knock backs by now. Little bumps in the road to recovery are to be expected and I have prepared myself for most things. However, I found myself once again in disbelief at my situation when a letter landed on my doorstep this week from the benefits office. Well, actually, two letters. The first stated that after once again filling in forms, collecting evidence from my doctors and specialists that prove my unfortunate situation, my Disability living allowance money has been halved. Yes, halved.
The benefit that was pittance before is now loose change for living in this hell. I don’t usually like to discuss money, but I feel it’s important to educate people about the dire financial situation you can be in when living with a disability which means you cannot work. I now receive £18 a week from the government to help with costs for living with a disability.
On top of this devastating news, I then received another letter about the only other source of income I receive, my employment and support allowance. It seems after battling for months with an appeal last year to keep receiving this benefit, I now have to prove myself once again. More forms to fill in, more evidence to collect for a further £80 a week. When you combine the two amounts I receive, I am expected to live off about £300 a month. Now, I am lucky that I have a family who can feed me and support me when needed, but if I lived independently I would be severely in the ‘crap’ right now. Why do I have to keep proving myself when my condition is not going away? It’s not curable, and yes there is hope that it may improve but I would inform them of any changes (as I am constantly reminded to on any correspondence they send).
So now I am in a situation which is forcing me back into employment if I have any hope of a future living independently. I was hoping to go back to work this year anyway but I don’t want to be in a situation where I have to take a job I physically cannot do just to keep some money coming in. It really is the most frustrating and demoralising system. I am fed up of fighting for what I deserve. No doubt I will be called up for another pathetic medical exam, lead by a ‘professional’ who has no knowledge of arthritic conditions and will inevitably judge that I am perfectly fine (because sods law means I will probably be having a good day when the examination presents itself).
I find myself in constant state of ‘silent screaming’ (this is when you are screaming at the top of your lungs in your head but no sound appears from your mouth). I know many others will be silently screaming too. And with the situation only apparently going to get worse with the government reforms on benefits, where does this leave us? Stressed, anxious and in a constant state of worry that’s where. And this on top of a distressing disease is enough to drive anyone insane. It’s no wonder that the majority of people with chronic illnesses are depressed, we really have too much to deal with. I don’t expect or want pity, just some help from the system that is supposed to support those who are genuinely ill and in need. It is obvious the few selfish people who cheat the benefit system when there is no reason for them to not be in work, are spoiling it for everyone else.
On a lighter note, I am concentrating my efforts on supporting those in need with my fundraiser. Organising this is going well, I have received loads of support from local people and as a result tickets are selling fast! So if you can make it on Saturday 19th February and are in the mood for some great live music, champagne, winning some amazing raffle prizes and watching some gorgeous models strut their stuff in the catwalk show then contact me to get your ticket. All this for only £6, now that’s a bargain. All proceeds go to Arthritis Care UK.

1 comment:

  1. As someone who is now on full DLA because of my Arthritis, I can read this and fully understand your frustrations. What really annoys me about the whole process is that DLA is proven to have the lowest fraud rate of any out there. But, I also cannot understand how people believe we want to be on DLA. My civil partner can not work, because I need constant care *while always trying to do as much as is possible every single day* - But they even had to open a pack of crisps for me the other day. Pittance is paid for being the full time carer as well, yet the law demands they work at least 35 hours a week.

    If we both worked as we wanted to *I've also worked and paid in to this system*, we'd be so much better off it's unbelievable. We don't want these handouts, but our condition means we have to go for them, otherwise we would be out on the street!

    I also object to the way the whole process is currently assessed. Those who know how to work the system will continue to do so - whereas many of us won't even know we're entitled to these benefits (I didn't for years). I was told in no uncertain terms by an independent benefits advisor who helped me, that I had to "play" the system, otherwise I wouldn't get anything.... In other words, I needed their help to make sure the right key words were used, and that even if I was having a better day on assessment - I exaggerated it. Fortunately, when I had my last medical assessment, I was on a total off day, with obvious signs of swelling and heat around some joints. But to feel I was advised to do this sits very uncomfortably with me. I'm not sure I could if I had to.

    I also hope your fundraising efforts are successful - and good luck with your benefit application/appeals.