Saturday, 6 July 2013

Dismal Facts of Claiming

Sunday 7th July 2013 04.44

I probably ought to be in hospital, a place I fear due to past experience. I also fear applying for a 'change of circumstances' with DLA. When I applied for it I was not well enough to self care or walk around my house every day. I had been too ill to reapply at the beginning of 2008. I was eligible if fairly assessed, nothing much had changed since my last renewal, if anything I was struggling even more and had far less help. I was also too ill to inform WTC straight away, as I was still desperately trying to earn a living as self employed. I had started getting panic attacks alongside the physical illness, especially when dealing with the system to try and access help. It isn't a kind system when you are at your most vulnerable and it has got even worse. I sent my renewal pack back with a letter saying how I am not well enough to do this. It was very upsetting.

About November 2008 I realised I was not going to be able to get out selling my art & crafts again, at least for a while. I signed off WTC and signed on to ESA. I had an assessment, the doctor was nice, he treated me with dignity, respect and as if I were not a piece of dirt. I doubt he still works for Atos. He recognised I was doing my best and struggling simply to self care well enough to keep myself alive. I had to go to back to work interviews that I often cried through and the advisor was concerned for my well being. She advised me to apply for DLA again. I faced my fears and filled in the forms. Again I got told no. I appealed and while waiting for the tribunal wrote about a massive panic attack I had while out and how wrong the decision was. I had a reconsideration granted without tribunal for low mobility. I would probably have had high mobility reinstated if it had got to tribunal. I was too battered by the system to challenge it.

2010 I had a WCA. I was shocked and had a breakdown when I was declared fit for work with huge discrepancies in the data, things totally untrue and assumptions that because I was not rocking I didn't suffer from anxiety. CAB helped me and I won the tribunal in 2011. It had very much taken it's toll on me. I suffered more than when I was raped with the incessant thoughts about being wrongly declared fit for work and when I physically suffered and struggled more the thoughts made it feel even worse. I got a downstairs single bed as sleeping on the sofa was not doing me much good.

When the forms came through again 7 months later I asked for CAB to visit again and fill the forms in for me. I had transco out about gas fumes on 3rd November 2011, they shut my heating off. 4th November CAB lady came. I had to leave my front door unlocked as I was not well enough to answer the door. Early hours of 5th November I had to have an ambulance. I was let out unable to self care 11.11.11 on warfarin, as they suspected a blood clot after I told them of the one I had in 1982. While I was in hospital I remember thinking and saying that if I was assessed in hospital they would ignore that fact and declare me fit for work. The weekly or twice weekly anticoagulant clinic was very stressful. I had to have hospital transport and a wheelchair in the hospital. Many times I felt so awful I would hide my face in my hands and cry.
      05.34 Peak flow 140 using nebs. Writing this is affecting me but not writing it is also affecting me.
January 2012 I had to have the ambulance out and treat me while I sat on the toilet without the breath to wipe, flush and pull my pants up after going to the toilet. My son was there to help with the ambulance as November the ambulance crew had been very unpleasant to me, telling me I was just having a panic attack and would just be sent home. I had waited 6 hours for him to come back from an away game he had played at and had been desperate for the toilet in all that time. This crew were lovely and treated me with utmost respect and dignity in a very undignified situation. I was in about 5 days I think. I was able to stop the warfarin March 2012 after my lung specialist appointment and he said there was no evidence on the scan of a blood clot on my lungs back in November. Just in time for another ordeal not the system for a change, I was a witness in court about abuse. Having been raped and been subject to other abuses I see the system abuse as worse than rape.

I had found someone to go with me to my WCA appointment which was cancelled the day before. Then a new date 25th May the day after my birthday, I couldn't find someone to go in with me. I was rung about changing times on my birthday. The whole thing was incredibly stressful and harmed my well being considerably. It has also made it so I often don't answer my phone again. 27th June 12 I was in hospital again after another ambulance trip. 28th June 12 the decision maker rang me apparently but getting no answer declared me fit for work and my ESA was stopped that day. 1st July 12 I was sent home. 6th July I got the letter telling me I was fit for work and my benefits had been stopped.

CAB did the appeal for me as I was worried it would push me back over the edge into another mental breakdown. Mind & CAB support were vital and I felt so lucky to have some people taking care of me, if not the system.

This time sick notes were more difficult and far more stressful to get, even when I was quite seriously ill with breathing difficulties one doctor distressed me so much with his attitude that I cried for hours, had to fight the urge to stab myself in the arm with a Stanley knife and when I finally fell asleep I woke up after 2 hours of sleep crying again. He gave me a month, which meant another appointment and more stress I saw him again as I needed to face my fear of him and tell him how it had made me feel. I went in my pyjamas in a taxi as I was too ill to get dressed. I was not able to go anywhere that didn't have a nebuliser at that point. I was very ill much of July, all of August, September, October and most of November, then became more moderately ill again, so less days where I may need an ambulance and possible death featured.
I attended pain clinic via hospital transport March 2013. That showed me I had already learnt very well to pace myself and assess how much I can do, which is often very little as it is at the moment.

I won my tribunal and was put in the support group in May 2013. The tribunal were surprised I was only on low mobility and so was the CAB lady. The doctor at my tribunal apologised for the distress I was put through. Shame it won't stop it from happening again under the current system. The lady from CAB advised me to put in a change of circumstances I said yes but when the forms arrived I couldn't look at them or ask for more help I was having a bit better health for a few weeks, not good health, just not quite so awful and I was afraid it would make me worse again. As it happens I have had a demand for overpayments from the WTC from when I was too ill to inform them of a change of circumstance and from when I stopped claiming they said they had already paid £300 for that time after I started ESA to the following April and even though I informed them straight away I have to pay back money from when I was on WTC. That arrived just before my birthday this year. I know the system is not fair or set up to support vulnerable people, it is there to fill us with fear and make our conditions worse through the stress. So although I am currently so very ill again I am scared to apply for a change of circumstances as I am scared to give you another chance to abuse me and treat me like a criminal and actually worse than an abuser gets treated, just for being ill.

06.39 Peak flow 140 too soon to use another neb, unable to lie down, too breathless. 

06.58 calming down a bit now while wondering if I should really post this and should I really send it to the DLA


  1. 01.41 Monday 9th July 2013
    Elaine Edwards shared a link.
    5 minutes ago
    As I find more courage to share this, after the courage it took to write, because by writing it I faced fears and pushed old buttons that have triggered bad body, mind and emotional responses that have been life threatening at time...I seem to be gradually getting a little better and may be able to have a wash and put non smelling clean clothes on...think thee pretty py's have been on a week but I have been too weak and breathless to change them...

    I thought about how little by little working on the fears of the psyche picked up through experience of the traumas of life, facing them, breaking them down to realie it was normal to feel that way due to that experience and healing is forgiving self for being normal. Society holds us into norms that do not allow healing after trauma but instead piles more trauma on top to see if it will break us....

    I think I may be disabling the buttons that often disable me...layer by layer...
    Noticed also the wording...'claiming' to be unwell enough for work already puts an onus of doubt as to if the claim is true...the whole system is set to works especially well on the conscientious ones and the ones primed to feel worthless...

  2. I add also...
    Some healing we do is as traumatic or worse than the thing we are healing...but is a necessary part of the process of living a life filled with more love than fear...
    Elaine Edwards
    20 minutes ago
    Mortality on my Mind
    After skating on the edge
    I let these thoughts fledge
    If I were to die tomorrow
    which isn't in my plans
    just an often present possibility
    Seen and felt quite obviously
    by those with eyes to see
    I've been close to Nigel again
    better known as Grim
    my friendly neighbourhood Reaper
    he quietly squeezed
    constricting drowning lungs
    nudged me to have my say
    blew a kiss as he edged away
    whispered it's ages till your day
    unless you give up the role you play
    chaotic as it goes in many ebbs and flows
    the point if that happened
    before my dreams all planned
    I know I've shared much love
    done a better job with my life
    than those who aim to cause strife
    endangering my life
    but worse than that of hundreds
    upon thousands of other loving beings
    the power is in love
    it never really works to try to steal that away
    love always finds a way to save the day...
    or something like that...
    Peace Artist Lainey 02.44 Tuesday 9th July 2013