Friday, 14 January 2011

One month before Heartbreak

It's almost one year now since I was diagnosed with Multiple Sclerosis.
My life has changed forever in the last year, in ways I could not have foreseen and would never have dreamed could happen to me.

I now have to have someone else to change my bed for me because I can no longer do it myself.
I have to get a taxi to the doctors surgery 10 minutes walk away because I can no longer walk there.
Last week I had to leave the shopping centre after 5 minutes because my head was hurting so badly.
I have a rail on the wall so I can shower.
I can't open a can with my left hand anymore.
I have to swallow my dignity and discuss my bowel and bladder functions with a nurse.

If you're thinking this is not a fun way to live you'd be right. It isn't. I am slowly coming to terms with it but I still grieve for the life I no longer have. For the opportunities that I will no longer to able to take.
I wanted to learn the violin, to learn the tango and Irish dancing, to walk the Pennine Way and Offa's Dyke.
None of these things are options for me anymore but I am slowly learning to accept it.

I am learning to adapt. I bought a tumble dryer because I can't walk to the launderette anymore. My family bought me a small dishwasher because I can't wash up by hand. I buy pre cut vegetable and ready grated cheese so I can still eat healthily and not waste precious energy. I buy ready meals for when I am too tired to cook.
I still struggle with getting taxis everywhere because I know that the bus would be so much cheaper but I just can't use it.

These are all things that Disability Living Allowance - DLA- helps to afford. Without it I don't know what I would do. But I am now faced with the prospect of losing it.
The coalition government in it's infinite, non disabled wisdom has decided to do away with DLA and replace it with Personal Independence Payment - PIP. And they are re-drawing the eligibility criteria so less people will be able to claim.

Make no mistake, DLA is not easy to claim. The form is 48 pages long and took me weeks, with the help of a friend, to complete. The only way to deal with having a chronic condition is to try and pretend it's not there. Claiming DLA strips away your dignity and forces you to confront every tiny thing that is wrong with you. It asks the same questions over and over, worded in a slightly different way, to try and trip you up. And it requires medical evidence from a professional. It is the most difficult benefit I have eve had to claim.

And despite MS being incurable and progressive, it was only awarded for 2 years.
So next year I will have to claim all over again. Except if the reforms go through it will be a different benefit. One that is designed to be given to as few people as possible. If I should end up having to use a wheelchair then I would have trouble claiming, despite that meaning my illness is worse. If I should end up being unable to live independently and go to a care home, the Mobility part of DLA would be taken away. I would end up completely reliant on friends and family to go anywhere or else be stuck in staring at the walls all day. Every day.

The government claims that DLA is unsustainable. Do they have any idea how insulting it is to people like me to be told that? Do they realise that just because they decide not to pay everyone those illnesses won't just vanish?
DLA has the lowest fraud rate of all benefits simply because it is so hard to claim.

The government have also admitted they have not done any assessment to determine how these cuts will impact on disabled people. This means they have proposed a series of cuts without any idea of how they will affect the very people they are targeting. This is alarming as well as inherently unjust.

There is a miasma of fear that is very nearly palpable running through the disabled community. We are dependent on these benefits to lead any kind of ordinary life. Not a luxurious, jet set one, just an ordinary one.

The public consultation for DLA ends on Valentines Day. I beg you all to do what you can to prevent the reforms so me and people like me can continue to live a nearly normal life.

Sign the petition against the reforms.
Write a letter to your MP. You can use a template letter so it takes hardly any time at all to do.
Write to Maria Miller the non disabled minister for disabled people.

Help us to spread the word about the campaign. People need to know just how bad it could get. And it will be bad. If you read my previous post you'll see Ali's story of how she will take death if she is refused because she can't face abject poverty and homelessness again. Her story is not the only one. I've seen many posts like that. People are so scared and so desperate that they think suicide is their only way. Many of them feel that secretly the government would prefer that because then it will no longer have to support them. Who can blame them when that is what is implied when told we are 'unsustainable'?

Ask yourself this - what sort of world do you want to live in? One that treats it's disabled and vulnerable as people or one that treats them as a burden?

And remember that most, including me, aren't born disabled. One day it could be you.


  1. great post. we will stick together. I hear your worry and anxiety. I feel it also


  2. Excellent post! I second markinsutton's comment.


  3. A really good post. I am not personally affected. I have tried several times to claim DLA for my mother who has post polio syndrome. A legacy of having polio when she was 5. My mother is now over 60. It is frustrating and I will be like you writing a blog post and signing the form that you link to on your post.

  4. Just picking up on something you have said. The only way to live with a disability is not to pretend it isn't there. There is another way that involves acceptance - not giving up - but acceptance. That you are still you but now you are a different you. When you become old and struggle to walk, read, or have arthritis in your hands you learn to accept that you are now different but seek new challenges and goals and ways of living. It is not too big to deal with. You are bigger than it. To say that you need to pretend it isn't there is a bit like the view that being disabled isn't quite like being 'normal'. You are normal. Just a different normal. You don't have to embrace it but when you stop fighting it you realise there is no struggle. And no struggle gives you a lot of freedom to decide how you do want to live and what you do want to do.

  5. May I ask if you have a disability? It's impossible - for me at least - to accept my condition without realising every single second that I won't ever be able to do certain things. The reality of MS is that it is progressive. And it fluctuates. Every day I am hit with the knowledge that it could get worse. How am I supposed to accept that and be ok? The only way for me to live with this to to pretend that everything is fine.

  6. I thought that I would share some good news. I applied for the 3rd or 4th time for DLA for my mother before Christmas. She heard just after the New Year that a letter of support had been requested from the Physiotherapist that she sees. A conversation with the Physio revealed that no letter of support had been requested. Then out of the blue, just as getting plan of battle ready a letter confirming that Mum has been awarded DLA (horray!) A by chance conversation with the GP confirmed that they had received a request for a letter which they obviously did. We have victory now, but for how long?

  7. Brilliant, I'm really happy for you. I hope it was awarded for a long enough period that you get a bit of respite from your battle