People send me their stories a lot. Some are fragile, some angry, some frightened, some defiant. But they all deserve to be heard. Today, Vanessa sent me her story. If any of you would like to add your voice to this blog, remember, alone we whisper, together we shout.
If you are healthy imagine this for a moment?
Stick a 5lb bag around each limb, add a tornique around one leg and an alternate arm. Dont forget to tie a band around your head and pull it really tight so it stops you concentrating at times. During the day feel free to put borrow your nans glasses and do some shopping. Oh and must not forget the final ingredient.. do all this after being awake for 40 hours!
I know this analogy is true because I was healthy once. I can compare
I worked up to 16 hours some days in my yrs as a delivery driver, I would load up my van at 6am, deliver my van by teatime. then collect back onto my van and empty it at the end it the day. All single handed.
At any delivery I might have a drop of 20 x 5kg boxes of paper up 3 flights of stairs, I did this for yrs.
I used to also work for a lighting company and had to climb onto cranes in helicopter hangers to change the bulbs! Or re-lamp the whole of Tesco's in an afternoon (the days of fluorescents!)
I was exhausted to the point of collapse some days. I remember it. But I also remember it got better after a good nights sleep. The feeling of MS fatigue is much the same, but it doesn't get better and comes on with something as simple as one household chore
So the point of the Atos assessment is what I can do? I can do most things but with the above. Does this mean Im just weak willed and can work really?
How do I explain to you that even though I can do it, I cant? I can only just manage my life. If I have to work I wont be able to live.
I dream I can, I hope of a cure, I want to follow my dreams, I want to carry on learning and contributing but I cant because my illness stops me,
Its a medically diagnosed neurological condition that has no cure, it is also degenerative so until a cure is found I wont get better. Why does that not void me from your test? can I have MS and be a cheat? really?
I know how the witches felt on their ducking stools now..Will I float or sink?
My mental health is affected and I can see how anyone with MH issues feels so frightened. This isnt assessment it is judgement.
What is the point in me living now, I am no longer allowed quality of life because I'm too sick to work and I have to appease all who view and judge my disability levels for the rest of my life? ? god forbid I should get on a rollercoaster ! Or find pleasure in a hobby like baking because then I might be deemed fit for work, or appear in the DM as a cheat!
The worst battle for me in all of this is my mental one.. Am I weak? Is it me not trying hard enough? I carry so much guilt about my failure as a human being to overcome my illness and be the person I am as if without it. As society seems to expect of me.
Since when was it morally decent for someone who has never spent even a day in a wheelchair decide that to be able to propel yourself you are not mobility hindered?
So when you ask me at the assessment Can I lift a jug of water? I want to answer that it is an irrelevant question and in noway an indication of the fact that I cant peel more than 3 potatoes with out going into spasm and therefore pretty useless! it applauds the fact I can raise a jug!
I would rather stand in-front of a judge and jury (or Mr Jay) and plead my reasons for not answering Atos questions than answer the questions in the first place?
And my other little rant is.. If I am under the eyes of the law 'disabled' (and I am because I had to prove I was in order to claim when I was sacked for incapability at work rather than letting me reduce my hours) why is someone else deciding my disability?
I also have no convictions of fraud and can pass an enhanced police check so why treat me like I am lying about my condition when I have the back up of medical science?
Monday 18 June 2012
Wednesday 18 January 2012
Elaines story #spartacusreport #spartacusstories
"I don't think I said what
the significance of the water in the bucket from the leaking roof was,
there wasn't a damp patch around it so I was very lucky it just leaked
that much...smiles Today I have been to anti-coagulant clinic and I am
very tired. I am also about to eat the baguette pizza, I nearly burnt
my hand, just stopped myself from picking up the tray fresh out of the
oven bare handed. I need to remember also to take my warfarin, which I
forget too often causing more clinic visits and less energy for my plan
to get batter and sort my immune system out, which has suffered after
the initial steroids attack on it through years of ongoing malnutrition
and added stress on top of other distress and stress from the DWP,
Atos and the JobCentre. I wrote this earlier to my MP, while I was
waiting for hospital transport to knock any minute. They were an hour
early today. So an extra hour in hospital I would have loved to spend
waiting for them instead!
I won my tribunal in March of last year after wrongly being declared fit for work in June 2009. I did mean to inform you at the time but life gets complicated at times. It took me a while to stop having flashbacks of all the trauma of the assessment process every day and every night as other serious concerns overshadowed it. When the ESA50 came through in October I got CAB to fill it in. They came to visit on the 4th November, the day after my heating system was condemned until made good and on the 5th I was in hospital due to living in fumes of an unserviced boiler and no funds to fix or service it. I was treated for suspected pulmonary embolism and now attend the anti-coagulant clinic usually twice a week. I have no heating apart from an electric heater until Nest install a new heating system, which was okayed in September. The ESA50 was due in on 15th November but I have heard nothing back yet. I have learnt to live with the uncertainty of my having funds to live on as well as grave difficulty in surviving ill health and unsuitable housing that as a home owner I am unable to get fixed by the council or do myself. I am fully expecting to be declared fit for work again even though I am in a far more untenable position to.
I have been informed that if the time limiting goes through I will no longer be entitled to ESA from April. I felt it makes the assessment process rather arbitrary and simply a further attack on my well being. I think you voted in favour of these reforms didn't you? How I will live then I have no idea. I already pay over half my mortgage interest due to the cuts to interest payments, £100 interest, £40.90 policy, both monthly, less than £20 a week from DWP*. I live in an uncertain future where it seems the government has absolutely no care if I live and would prefer if I died, as I am worth less than nothing due to being ill and unable to work. I am also held back from recovery with added stress and restrictive poverty.
That as my in brief individual story is not unusual, it is widespread in the devastation that the reforms are putting people through who are already stretched to their limits by their health.
I am writing to you now to bring this report to your attention and update you as to how this is personally affecting me. This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response, http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf
MOV01850[1].MP4 Monday 9th January 2012"
* Monday 16th January 2012
My mortgage company rang me today about an extra £1 and a debt of 26p or something. They rang as I got back from this weeks clinic, I got confused. But, I did ask them how much the DWP pays and it is £79.76 every 4 weeks. I get £188.50 every 2 weeks ESA and £78.20 every 4 weeks DLA lowest care component. CAB talked about reapplying as I obviously (to them) should be on a higher rate. Seeing as my mobility is more impaired more often than it was when I got the full rate mobility I tend to agree but I couldn't deal with that and the tribunal at the same time. Renewal should be pretty soon.
(pause to get calculator)
If I add them up, the mortgage payments ~ £19.94 a week , ESA £94.25 a week & DLA £19.55 a week = £133.74 a week.
Mortgage (before the extra £1, including what they pay, I nearly forgot that) £52.54
Electric and gas £145 per calendar month £33.46 a week
So far I have £47.74 left...
Water £7.79 a week...
£39.95 left for frivolities like phone, food, transport...
You may guess it already isn't enough to live comfortably, if/when it is cut further....
I said I no longer have as many flashbacks but it is still on my mind far too often. The other night I put my socks on in bed, it wasn't as hard an activity as it can be but harder than most healthy people would find it, there are times it takes me an hour to put my socks on and regain composure, not always through difficulty breathing, not always through abject pain, sometimes due to sheer fatigue, sometimes a mixture of all those things. I consider what they ignore as barriers for fitness for work every time an activity is harder or easier. It is a psychological warfare on conscientious people, intended as so or not.
I would prefer the dignity of being able to wash and dress myself often enough so that I don't smell so often, be able to keep my house clean and maintained, be able to make use of my talents to sell my art and crafts, eat regularly, go for a walk, not need a wheelchair and hospital transport for clinic or the clinic itself. That is the way life is, I value the help I do get for all its inadequacies and I value my life. I value the lives of others in better or worse situations.
I said back in 2008 that we could do this and create more taxpayers, strengthen the economy for all. I felt the Jobcentre needs to be shown trade description laws, the only support from my Employment Support Allowance is the actual £94.25 a week. There could be a drive for training and implementing more practical and emotional care and support within the system. If I were actually supported I may not still be as ill as I am now, I may not have been subjected to fumes for so long.
Tuesday. Just been reading the pips descriptors, there are many times I can't walk 50 metres without it being life threatening and times when I can. There are many times that making a simple meal is too much for me to do, even reheating a meal can be a challenge but I have never qualified for help for cooking and it seems I wouldn't qualify for mobility on pips either. The longest I was unable to bathe myself for in the last 2 months was about 11 days, that was quite uncomfortable, I really stank. The good news is I can bathe again at the moment without it being a danger to my life, just to my energy levels. Sometimes I despair of the whole thing.
*Edit!*
After posting this I went to my email to send the link if I can concentrate long enough on a practical thing, writing is often easier...I had a reply from my MP and as you may see by my reply although he is keeping an eye on what is happening there was much of the rhetoric being churned out by those putting these 'reforms' through.
Dear
Thank you for your reply.
If you would like a real picture of how DLA works maybe speak to your constituents who claim it? I first claimed it in 2004 and was turned down after a very distressing medical in my own home where the doctor appeared to look at me and my messy surroundings with contempt and didn't understand the peak flow chart I presented him with. The decision was that I could walk unlimited with normal gait and with no danger. I didn't appeal, the whole process had been demoralising and upsetting. However, a few weeks later an ambulance was called and I was admitted to hospital after trying to get back to my sofa after visiting the toilet. The anger got to me and I wrote a letter saying how wrong the decision was from my hospital bed. It was decided it would go to tribunal. I was awarded higher rate mobility for 2 years from the date I applied, nothing for help for preparing food which I still regularly have difficulty for days or weeks at a time. I reapplied and got a further year award for higher rate mobility. When it came time for renewal I was too overwhelmed to go through the forms and the process again. My family had broken down by that point and I struggled to find hope or self worth.
Everyone I know who has claimed it has at some point gone through the tribunal process, I do not know anyone who has been given a lifetime award. If the assessments are anything like the ESA ones they will still be not going to the right people. When friends who had realised I qualified encouraged me to apply, they warned me I would be turned down and would have to appeal, that it is common knowledge, that is how it goes, as a matter of fact. I know people who have progressively got worse and have DLA cut. I've experienced it myself. The system needs improving not making even more difficult to get help through. I don't know if you realise how distressing it is to have to admit to oneself how little one can do and how debilitated one is. To write out all these details time and time again and have them dismissed. I apologise if I am irritating, it can be uncomfortable to read the words of a distressed person.
I applied again in 2008. I was turned down again I was overwhelmed and upset. I was struggling to come to terms with the way life was so curtailed. I was close to suicide and was having increased episodes of severe panic attacks. I wrote a poem about it and an angry letter to DLA which was taken as appeal and without it going to tribunal I was awarded the lowest rate of the care component for needing someone with me when I go to new places. It was ignored that I had malnutrition and mobility difficulties. I was too tired and too defeated to challenge it.
Forgive me if I don't trust the DWP, Atos or the government to implement a fair a decent working system, it is a system that needs to be improved not cut. There is not a good social care system, it is getting worse and as the man who assessed me in 2010 said I fall through the cracks as they have widened as my conditions got worse. He was concerned about my malnutrition but powerless to provide a support worker, which may have actually helped me sort my heating out so I hadn't been living in fumes for well over a year. I certainly don't trust the minister against disabled Maria Miller. The report may have had less people in it but it is still valid. Who knows maybe both reports are somewhat biased and the truth is somewhere between them but what is clear is that the report from DWP does not speak for disabled people nor does Maria Miller and others who vilify and add to the media assault against disabled, which makes us feel under constant threat. It is honestly worse than the PTSD after rape and more perverse in its infiltration into the feeling of none safety. I am working on this to attempt to stay stable and striving to recover so I may one day be able to earn my own living. Also that I may be able to do something about my living conditions. I have things going mouldy underneath my bed and rain coming in through my roof. I don't know if there is anything you can do to help my cause there?
The term, 'those who need it most' would that be only people who can't survive without someone doing everything for them but those who can barely exist don't count? That is how I feel and many more I know who are struggling daily to stay fed, warm and alive.
I don't know if you are aware but *x* stayed with us when she came back from *x*. I know you helped her and *x* who worked for you then with some of the difficulties they faced. I know they spoke very highly of you, which gave me the confidence to reach out to you. I am sure you appreciate that it is a very difficult thing to do, especially after being knocked back so many times.
Kind regards
Elaine.
I won my tribunal in March of last year after wrongly being declared fit for work in June 2009. I did mean to inform you at the time but life gets complicated at times. It took me a while to stop having flashbacks of all the trauma of the assessment process every day and every night as other serious concerns overshadowed it. When the ESA50 came through in October I got CAB to fill it in. They came to visit on the 4th November, the day after my heating system was condemned until made good and on the 5th I was in hospital due to living in fumes of an unserviced boiler and no funds to fix or service it. I was treated for suspected pulmonary embolism and now attend the anti-coagulant clinic usually twice a week. I have no heating apart from an electric heater until Nest install a new heating system, which was okayed in September. The ESA50 was due in on 15th November but I have heard nothing back yet. I have learnt to live with the uncertainty of my having funds to live on as well as grave difficulty in surviving ill health and unsuitable housing that as a home owner I am unable to get fixed by the council or do myself. I am fully expecting to be declared fit for work again even though I am in a far more untenable position to.
I have been informed that if the time limiting goes through I will no longer be entitled to ESA from April. I felt it makes the assessment process rather arbitrary and simply a further attack on my well being. I think you voted in favour of these reforms didn't you? How I will live then I have no idea. I already pay over half my mortgage interest due to the cuts to interest payments, £100 interest, £40.90 policy, both monthly, less than £20 a week from DWP*. I live in an uncertain future where it seems the government has absolutely no care if I live and would prefer if I died, as I am worth less than nothing due to being ill and unable to work. I am also held back from recovery with added stress and restrictive poverty.
That as my in brief individual story is not unusual, it is widespread in the devastation that the reforms are putting people through who are already stretched to their limits by their health.
I am writing to you now to bring this report to your attention and update you as to how this is personally affecting me. This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research. I look forward to your response, http://www.ekklesia.co.uk/files/response_to_proposed_dla_reforms.pdf
MOV01850[1].MP4 Monday 9th January 2012"
* Monday 16th January 2012
My mortgage company rang me today about an extra £1 and a debt of 26p or something. They rang as I got back from this weeks clinic, I got confused. But, I did ask them how much the DWP pays and it is £79.76 every 4 weeks. I get £188.50 every 2 weeks ESA and £78.20 every 4 weeks DLA lowest care component. CAB talked about reapplying as I obviously (to them) should be on a higher rate. Seeing as my mobility is more impaired more often than it was when I got the full rate mobility I tend to agree but I couldn't deal with that and the tribunal at the same time. Renewal should be pretty soon.
(pause to get calculator)
If I add them up, the mortgage payments ~ £19.94 a week , ESA £94.25 a week & DLA £19.55 a week = £133.74 a week.
Mortgage (before the extra £1, including what they pay, I nearly forgot that) £52.54
Electric and gas £145 per calendar month £33.46 a week
So far I have £47.74 left...
Water £7.79 a week...
£39.95 left for frivolities like phone, food, transport...
You may guess it already isn't enough to live comfortably, if/when it is cut further....
I said I no longer have as many flashbacks but it is still on my mind far too often. The other night I put my socks on in bed, it wasn't as hard an activity as it can be but harder than most healthy people would find it, there are times it takes me an hour to put my socks on and regain composure, not always through difficulty breathing, not always through abject pain, sometimes due to sheer fatigue, sometimes a mixture of all those things. I consider what they ignore as barriers for fitness for work every time an activity is harder or easier. It is a psychological warfare on conscientious people, intended as so or not.
I would prefer the dignity of being able to wash and dress myself often enough so that I don't smell so often, be able to keep my house clean and maintained, be able to make use of my talents to sell my art and crafts, eat regularly, go for a walk, not need a wheelchair and hospital transport for clinic or the clinic itself. That is the way life is, I value the help I do get for all its inadequacies and I value my life. I value the lives of others in better or worse situations.
I said back in 2008 that we could do this and create more taxpayers, strengthen the economy for all. I felt the Jobcentre needs to be shown trade description laws, the only support from my Employment Support Allowance is the actual £94.25 a week. There could be a drive for training and implementing more practical and emotional care and support within the system. If I were actually supported I may not still be as ill as I am now, I may not have been subjected to fumes for so long.
Tuesday. Just been reading the pips descriptors, there are many times I can't walk 50 metres without it being life threatening and times when I can. There are many times that making a simple meal is too much for me to do, even reheating a meal can be a challenge but I have never qualified for help for cooking and it seems I wouldn't qualify for mobility on pips either. The longest I was unable to bathe myself for in the last 2 months was about 11 days, that was quite uncomfortable, I really stank. The good news is I can bathe again at the moment without it being a danger to my life, just to my energy levels. Sometimes I despair of the whole thing.
*Edit!*
After posting this I went to my email to send the link if I can concentrate long enough on a practical thing, writing is often easier...I had a reply from my MP and as you may see by my reply although he is keeping an eye on what is happening there was much of the rhetoric being churned out by those putting these 'reforms' through.
Dear
Thank you for your reply.
If you would like a real picture of how DLA works maybe speak to your constituents who claim it? I first claimed it in 2004 and was turned down after a very distressing medical in my own home where the doctor appeared to look at me and my messy surroundings with contempt and didn't understand the peak flow chart I presented him with. The decision was that I could walk unlimited with normal gait and with no danger. I didn't appeal, the whole process had been demoralising and upsetting. However, a few weeks later an ambulance was called and I was admitted to hospital after trying to get back to my sofa after visiting the toilet. The anger got to me and I wrote a letter saying how wrong the decision was from my hospital bed. It was decided it would go to tribunal. I was awarded higher rate mobility for 2 years from the date I applied, nothing for help for preparing food which I still regularly have difficulty for days or weeks at a time. I reapplied and got a further year award for higher rate mobility. When it came time for renewal I was too overwhelmed to go through the forms and the process again. My family had broken down by that point and I struggled to find hope or self worth.
Everyone I know who has claimed it has at some point gone through the tribunal process, I do not know anyone who has been given a lifetime award. If the assessments are anything like the ESA ones they will still be not going to the right people. When friends who had realised I qualified encouraged me to apply, they warned me I would be turned down and would have to appeal, that it is common knowledge, that is how it goes, as a matter of fact. I know people who have progressively got worse and have DLA cut. I've experienced it myself. The system needs improving not making even more difficult to get help through. I don't know if you realise how distressing it is to have to admit to oneself how little one can do and how debilitated one is. To write out all these details time and time again and have them dismissed. I apologise if I am irritating, it can be uncomfortable to read the words of a distressed person.
I applied again in 2008. I was turned down again I was overwhelmed and upset. I was struggling to come to terms with the way life was so curtailed. I was close to suicide and was having increased episodes of severe panic attacks. I wrote a poem about it and an angry letter to DLA which was taken as appeal and without it going to tribunal I was awarded the lowest rate of the care component for needing someone with me when I go to new places. It was ignored that I had malnutrition and mobility difficulties. I was too tired and too defeated to challenge it.
Forgive me if I don't trust the DWP, Atos or the government to implement a fair a decent working system, it is a system that needs to be improved not cut. There is not a good social care system, it is getting worse and as the man who assessed me in 2010 said I fall through the cracks as they have widened as my conditions got worse. He was concerned about my malnutrition but powerless to provide a support worker, which may have actually helped me sort my heating out so I hadn't been living in fumes for well over a year. I certainly don't trust the minister against disabled Maria Miller. The report may have had less people in it but it is still valid. Who knows maybe both reports are somewhat biased and the truth is somewhere between them but what is clear is that the report from DWP does not speak for disabled people nor does Maria Miller and others who vilify and add to the media assault against disabled, which makes us feel under constant threat. It is honestly worse than the PTSD after rape and more perverse in its infiltration into the feeling of none safety. I am working on this to attempt to stay stable and striving to recover so I may one day be able to earn my own living. Also that I may be able to do something about my living conditions. I have things going mouldy underneath my bed and rain coming in through my roof. I don't know if there is anything you can do to help my cause there?
The term, 'those who need it most' would that be only people who can't survive without someone doing everything for them but those who can barely exist don't count? That is how I feel and many more I know who are struggling daily to stay fed, warm and alive.
I don't know if you are aware but *x* stayed with us when she came back from *x*. I know you helped her and *x* who worked for you then with some of the difficulties they faced. I know they spoke very highly of you, which gave me the confidence to reach out to you. I am sure you appreciate that it is a very difficult thing to do, especially after being knocked back so many times.
Kind regards
Elaine.
Kirk's story #spartacusreport #spartacusstories
-------------------------------------------------------------------------------
I am another one lucky enough not to be in a terribly bad way, yet bad enough that working is not possible or at least very unlikely. I had always been a competent and capable person in work and sport. I was accustomed to succeeding in anything I chose to do and at work had risen to quite a high level. Approaching the age of 50 though work stress started taking a toll and I became psychotic which led me to become suicidal. A friend had recently started treatment for cancer but he drank himself to death before the cancer got him. This seemed an easy way to go so I started drinking with a grim determination. Within 2 years I was close to succeeding but was persuaded to visit some friends for a break who made me go to see a GP and was booked in to a hospital.
I had to temporarily stop drinking and found I was no longer committed to killing myself so I stopped drinking completely and started getting better. 6 months later I had an attack of encephalopathy which is when fluid builds up in the brain and puts pressure on it. This the brain does not appreciate and some brain damage is inevitable.
The problem with having a damaged brain is the person affected does not feel as if there is anything wrong. I know that 1 year ago I was convinced I was thinking completely rationally yet when I look back at some of the plans I was making they were completely unattainable. Now I think I am perfectly normal but how can I be sure when I thought I was normal 5 years ago and I now know I was as crazy as a very crazy man indeed. Even when I was hearing voices I made what I thought at the time were perfectly rational explanations.
The encephalopathy resulted in short term amnesia and long term locomotor ataxia, poor attention span, poor sense of balance and chronically poor memory. I also find it very difficult to deal with stressful situations and avoid speaking to strangers on the telephone if at all possible. My friends all complain that I don't answer the phone and I normally manage to forget to take my mobile if I leave the house.
I used to be quite well off but when I got ill I spent all my savings. It never occurred to me to claim unemployment benefit until I was discharged from hospital. I was asked where I was going to live and I answered I did not know as I did not have any money. The CAB and local council helped me out for which I am very grateful. Now I live very simply and am quite happy.
My ESA and DLA claims were or course turned down after I had seen the ATOS doctor who scored me 0 and he thought I might get a job as a 'Red Driving School' instructor. He was not in the slightest concerned that I could only get down onto and up from my knees with the use of a chair and had not yet relearned how to write with cursive script but could only use block capitals. My CAB representative filled in the appeal forms ( I was incapable of doing it myself ) and luckily having been in hospital for 3 weeks I had no dignity left so didn't mind answering all those personal questions truthfully. I won the ESA appeal and was awarded Lower Rate Mobility on the DLA appeal although my CAB representative was disappointed I was not given the Higher Rate Mobility.
I still fall over most days, sometimes several times a day but normally at home where I fall against a wall, chair or bed so do not hurt myself. I have only had one bad fall outside when I had to go to the A&E. Of course I am worried about 2013 when I am due for a review and I am still unsure what being in the work related group for ESA will actually mean for me.
I am, of course, Spartacus
I am another one lucky enough not to be in a terribly bad way, yet bad enough that working is not possible or at least very unlikely. I had always been a competent and capable person in work and sport. I was accustomed to succeeding in anything I chose to do and at work had risen to quite a high level. Approaching the age of 50 though work stress started taking a toll and I became psychotic which led me to become suicidal. A friend had recently started treatment for cancer but he drank himself to death before the cancer got him. This seemed an easy way to go so I started drinking with a grim determination. Within 2 years I was close to succeeding but was persuaded to visit some friends for a break who made me go to see a GP and was booked in to a hospital.
I had to temporarily stop drinking and found I was no longer committed to killing myself so I stopped drinking completely and started getting better. 6 months later I had an attack of encephalopathy which is when fluid builds up in the brain and puts pressure on it. This the brain does not appreciate and some brain damage is inevitable.
The problem with having a damaged brain is the person affected does not feel as if there is anything wrong. I know that 1 year ago I was convinced I was thinking completely rationally yet when I look back at some of the plans I was making they were completely unattainable. Now I think I am perfectly normal but how can I be sure when I thought I was normal 5 years ago and I now know I was as crazy as a very crazy man indeed. Even when I was hearing voices I made what I thought at the time were perfectly rational explanations.
The encephalopathy resulted in short term amnesia and long term locomotor ataxia, poor attention span, poor sense of balance and chronically poor memory. I also find it very difficult to deal with stressful situations and avoid speaking to strangers on the telephone if at all possible. My friends all complain that I don't answer the phone and I normally manage to forget to take my mobile if I leave the house.
I used to be quite well off but when I got ill I spent all my savings. It never occurred to me to claim unemployment benefit until I was discharged from hospital. I was asked where I was going to live and I answered I did not know as I did not have any money. The CAB and local council helped me out for which I am very grateful. Now I live very simply and am quite happy.
My ESA and DLA claims were or course turned down after I had seen the ATOS doctor who scored me 0 and he thought I might get a job as a 'Red Driving School' instructor. He was not in the slightest concerned that I could only get down onto and up from my knees with the use of a chair and had not yet relearned how to write with cursive script but could only use block capitals. My CAB representative filled in the appeal forms ( I was incapable of doing it myself ) and luckily having been in hospital for 3 weeks I had no dignity left so didn't mind answering all those personal questions truthfully. I won the ESA appeal and was awarded Lower Rate Mobility on the DLA appeal although my CAB representative was disappointed I was not given the Higher Rate Mobility.
I still fall over most days, sometimes several times a day but normally at home where I fall against a wall, chair or bed so do not hurt myself. I have only had one bad fall outside when I had to go to the A&E. Of course I am worried about 2013 when I am due for a review and I am still unsure what being in the work related group for ESA will actually mean for me.
I am, of course, Spartacus
Rose's story #spartacusreport #spartacusstories
I don’t have a blog, in fact truth be told I’m only now really taking
part in Social Networking and finding it amazing. So bare with me for
my part in #spartacusstories.
I am a Polio Survivor, I was 18mths at the time. There are more Polio Survivor’s than there are people suffering with Parkinson’s Disease. During our rehabilitation we were given Physio to strengthen weakend muscles, with the aim of discarding crutches/sticks/calliper’s and wheelchairs wherever possible. We all worked hard, many like myself at age 16yrs were discharged from NHS with no ‘aids’ and told to go out and get on with it, forget your ever had Polio.
I did this, joined the workforce age 16, got married in my 20’s, had 3 children, continued to work throughout.
I applied for DLA the first time about 12yrs ago, I was refused the first application. Despite knowing myself that my condition was deteriorating, it was another 2yrs before I re-applied, this time with the help of a friend who was also a WRO, she also had an aunt who was a Polio Survivor so fully understood that things were getting worse. I have now been in receipt of DLA for 10yrs, this is used to pay for a car, which I was dependant on then but am even more dependent on now. I was given it ‘indefinitely’ which I believe replaced the ‘for life’ award.
If I lose my DLA I will lose my independence, something I have fought for everyday for the past 50yrs. I will be trapped at home as walking any distance will bring on fatigue,brain fog, pain; public transport is also pretty useless because by the time I get where I need to go I am totally exhausted. Hospital appointments would take a 2 bus trip, but I can get there in 20mins by car avoiding much of the exhaustion and pain.
Polio has always been recognised as a neurological disease, but what many of us with polio know and many in the medical profession still have trouble knowing, is that many years after getting polio, something can trigger a condition very similar to ME or Chronic Fatigue Syndrome or even Fibromyalgia and includes the worst of those conditions including general fatigue, brain fog, memory problems etc.
It is known as Post Polio Sequelae or Syndrome. (PPS) On top of that, parts of the body that were apparently unaffected by the original polio, in my case your arms and other parts of your body, are now much weaker and attracting osteo-arthritis and getting worse every year
Can I just state, for the record, I am 52yrs old, I contracted Polio 1961, unusual but not unheard of, I was not fully immunised at the time. There are a few of us who are of ‘working age’ some will be migrating from IB to ESA. Me, I had to give up work 18mths ago as I could no longer cope, even though Access to Work had implemented all the aids they could for me. My ESA(CB) has run out and I have just been through WCA to see if I am ‘fit for work’ I am awaiting the results at this time.
As a community Polio’s have kept themselves pretty ‘closed off’, only speaking to other survivors for fear of ridicule and bullying which, sadly, happened a lot, especially to those of us in wheelchairs, using callipers/sticks etc. I feel that I have to speak out now, no-one else seems to be. As I have already said there are more than a few of us of ‘working age’, we have worked, we are now reaching a point when it is the body that is ‘giving up’ due to the overuse/misuse during our time we had our ‘normal’ lives. We are now having to accept the fact that we are disabled, the fact that was ‘drummed’ out of us as children that we were not and in fact ‘lucky’ we survived. It’s very hard to watch myself slip away like this, it’s the same for other’s. Myself and a couple of other’s have joined this campaign because we thought it was right, a real effort was made on our part to encourage other members of our community, did we succeed ? I have no idea as there was no response to our posting on forums/facebook/twitter.
So there you have it, it has taken me 3 days to write this down, it’s been an emotional rollercoaster, I am still coming to terms with what I am discovering is going wrong with me.
I am a Polio Survivor, I was 18mths at the time. There are more Polio Survivor’s than there are people suffering with Parkinson’s Disease. During our rehabilitation we were given Physio to strengthen weakend muscles, with the aim of discarding crutches/sticks/calliper’s and wheelchairs wherever possible. We all worked hard, many like myself at age 16yrs were discharged from NHS with no ‘aids’ and told to go out and get on with it, forget your ever had Polio.
I did this, joined the workforce age 16, got married in my 20’s, had 3 children, continued to work throughout.
I applied for DLA the first time about 12yrs ago, I was refused the first application. Despite knowing myself that my condition was deteriorating, it was another 2yrs before I re-applied, this time with the help of a friend who was also a WRO, she also had an aunt who was a Polio Survivor so fully understood that things were getting worse. I have now been in receipt of DLA for 10yrs, this is used to pay for a car, which I was dependant on then but am even more dependent on now. I was given it ‘indefinitely’ which I believe replaced the ‘for life’ award.
If I lose my DLA I will lose my independence, something I have fought for everyday for the past 50yrs. I will be trapped at home as walking any distance will bring on fatigue,brain fog, pain; public transport is also pretty useless because by the time I get where I need to go I am totally exhausted. Hospital appointments would take a 2 bus trip, but I can get there in 20mins by car avoiding much of the exhaustion and pain.
Polio has always been recognised as a neurological disease, but what many of us with polio know and many in the medical profession still have trouble knowing, is that many years after getting polio, something can trigger a condition very similar to ME or Chronic Fatigue Syndrome or even Fibromyalgia and includes the worst of those conditions including general fatigue, brain fog, memory problems etc.
It is known as Post Polio Sequelae or Syndrome. (PPS) On top of that, parts of the body that were apparently unaffected by the original polio, in my case your arms and other parts of your body, are now much weaker and attracting osteo-arthritis and getting worse every year
Can I just state, for the record, I am 52yrs old, I contracted Polio 1961, unusual but not unheard of, I was not fully immunised at the time. There are a few of us who are of ‘working age’ some will be migrating from IB to ESA. Me, I had to give up work 18mths ago as I could no longer cope, even though Access to Work had implemented all the aids they could for me. My ESA(CB) has run out and I have just been through WCA to see if I am ‘fit for work’ I am awaiting the results at this time.
As a community Polio’s have kept themselves pretty ‘closed off’, only speaking to other survivors for fear of ridicule and bullying which, sadly, happened a lot, especially to those of us in wheelchairs, using callipers/sticks etc. I feel that I have to speak out now, no-one else seems to be. As I have already said there are more than a few of us of ‘working age’, we have worked, we are now reaching a point when it is the body that is ‘giving up’ due to the overuse/misuse during our time we had our ‘normal’ lives. We are now having to accept the fact that we are disabled, the fact that was ‘drummed’ out of us as children that we were not and in fact ‘lucky’ we survived. It’s very hard to watch myself slip away like this, it’s the same for other’s. Myself and a couple of other’s have joined this campaign because we thought it was right, a real effort was made on our part to encourage other members of our community, did we succeed ? I have no idea as there was no response to our posting on forums/facebook/twitter.
So there you have it, it has taken me 3 days to write this down, it’s been an emotional rollercoaster, I am still coming to terms with what I am discovering is going wrong with me.
Tuesday 17 January 2012
Steves story #spartacusreport #spartacusstories
I made a claim for DLA 6 years ago. This was based on my 32 years of agoraphobia .... now severe. My claim was totally dismissed by the DWP (simply by ignoring what my GP wrote and stating that I was okay) and after three unsuccessful attempts I appealed in 2008. When they first totally rejected my application I started to believe that the DWP must know what they are talking about, so maybe I was okay ... then I realised they had employed inexperienced people who knew nothing about disability (but were probably on targets to achieve refusals) or were lying.
The first stage of my appeal was a 'medical examination'. What a farce! I met a retired GP who knew nothing about agoraphobia, who spent a long time telling me about his career, asked me (an Honours Graduate) stupid questions such as who the Prime Minister was, did some arm wrestling and knee-jerks reactions (for agoraphobia?????) and reported to the DWP that I was okay because I was not scared when there was the sound of drilling from the next room! I cannot understand how a man of such low-intelligence became a GP but I can fully understand why the DWP employed him as a 'refusals man'. And I realised that he had a very nice retirement job and could not afford to lose it and the huge sum of money he no doubt 'earned' by allowing too many claims; he had to refuse most to retain his job, I assume. The system was designed to minimise the number of successful medicals.
I then appealed and went to a Tribunal. Literally a FEW minutes before I entered the Tribunal the representative for the DWP told the Tribunal that she had to leave on urgent business but that the DWP conceded I should be awarded DLA. So for three years they rejected me by telling lies but when faced with having to explain themselves in front of intelligent members of the Tribunal, they could lie no more. And could not face me either.
The whole process was a sham, with the sole intention of preventing me (and others, of course) from being awarded DLA. The Tribunal awarded me Mobility allowance (which I had claimed) and also Care allowance (which I had not claimed) and gave both indefinitely. I think they added the Care Allowance to demonstrate to the DWP that my case was serious and that the DWP's stupidy had resulted in a higher figure being paid out than if they had accepted my genuine and modest claim in the first place.
I had assumed I would never have
to go through that ordeal again but it now seems I will. And they will
make life Hell for those who dare to claim.
But I note that no similar ordeal has to be experienced by the bankers who caused the financial problems and have since been awarded billions in bonuses.
But I note that no similar ordeal has to be experienced by the bankers who caused the financial problems and have since been awarded billions in bonuses.
The ill, weak, vulnerable,
elderly and disabled (not friends of the Tories) need to stick together
to avoid being down-trodden by the government's desire to punish them
for the transgressions of the wealthy (the friends of the Tories).
Julie's story #spartacusreport #spartacusstories
Hello, here's our story to publish if it's any use to you:
My son was diagnosed with autism when he was two years old. At that point, he was only able to eat custard, because it was both yellow and smooth. He couldn't tolerate anything touching his lips, so I had to carefully feed him his drinks on a tea-spoon. Meal-times took between two and three hours.
He couldn't stand in queues, so going shopping was a nightmare. As a single-parent I had no choice but to take him with me. He would lie down on the floor and sweep his arms and legs around. That kept him calm, but if there wasn't any room for him to do that he'd have a melt-down, screaming and crying. I lost count of the number of times I was accused of being a bad mother by members of the public. Our local post-office banned us from the premises - when I tried to explain he was autistic they didn't believe me.
At bed-time everything in his room had to be just so, or he'd have a melt-down and be unable to sleep. The curtains had to be open two feet apart, no more and no less. All the drawers had to be shut tight. Each and every toy had to be in the right box and each box had to be in the right place. Several times I woke up in the night to him screaming like he was being murdered - but it was because his shoes were the wrong way round on the floor.
He was terrified of showers and couldn't cope with sitting down in the bath. He counted drains in the street obsessively, amongst other things. He was terrified of drills, sirens, and other loud noises. He was also frightened of dogs, other animals and insects. He had no sense of danger and struggled to communicate with others, especially children.
As he's gotten older, with the help of some fantastic teachers and therapists, things have improved. He eats and drinks normally, comes shopping, sits down in the bath and his room is a tip like any other child's his age. He's even in mainstream school now, and, with help, is doing well.
But he can't go outside on his own. He tells complete strangers his name, age, address and other personal details, not understanding why that's dangerous. He thinks the staff in the supermarket are his very good friends because they speak nicely to him.
He walks out in front of cars, 'performing' looking both ways rather than actually doing it. He's still so terrified of dogs and flies that he leaps out into the traffic to avoid them - I've pulled him out the way of an oncoming car more than once.
He's been attacked several times in the play park by kids who don't know he's autistic and think he's 'weird'. Since he moved to mainstream school he's had ongoing problems with bullies.
He needs a carer, and while he continues to get DLA, that carer is me. If the government's plans go ahead and we lose the DLA, we'll also lose my Carer's Allowance and our Income Support. I'll be moved onto Job Seeker's Allowance and will have to take the first job that comes up - even though there's no child-care.
The last time I was at the Job Centre (I have to attend Work Focused Interviews) I asked my advisor if there was any suitable child-care at all that she knew of, because I'd like to get off benefits and at least work part-time if I can. Yes, she said, there's lots! Then she pulled out her big file, opened it up and found...nothing.
My son is due to have his DLA reassessed this year. The doctor says he still needs it and will support our application. With the government's cuts though, who knows what's going to happen to us? I'm waiting in terror for that big brown envelope to come through the door.
My son was diagnosed with autism when he was two years old. At that point, he was only able to eat custard, because it was both yellow and smooth. He couldn't tolerate anything touching his lips, so I had to carefully feed him his drinks on a tea-spoon. Meal-times took between two and three hours.
He couldn't stand in queues, so going shopping was a nightmare. As a single-parent I had no choice but to take him with me. He would lie down on the floor and sweep his arms and legs around. That kept him calm, but if there wasn't any room for him to do that he'd have a melt-down, screaming and crying. I lost count of the number of times I was accused of being a bad mother by members of the public. Our local post-office banned us from the premises - when I tried to explain he was autistic they didn't believe me.
At bed-time everything in his room had to be just so, or he'd have a melt-down and be unable to sleep. The curtains had to be open two feet apart, no more and no less. All the drawers had to be shut tight. Each and every toy had to be in the right box and each box had to be in the right place. Several times I woke up in the night to him screaming like he was being murdered - but it was because his shoes were the wrong way round on the floor.
He was terrified of showers and couldn't cope with sitting down in the bath. He counted drains in the street obsessively, amongst other things. He was terrified of drills, sirens, and other loud noises. He was also frightened of dogs, other animals and insects. He had no sense of danger and struggled to communicate with others, especially children.
As he's gotten older, with the help of some fantastic teachers and therapists, things have improved. He eats and drinks normally, comes shopping, sits down in the bath and his room is a tip like any other child's his age. He's even in mainstream school now, and, with help, is doing well.
But he can't go outside on his own. He tells complete strangers his name, age, address and other personal details, not understanding why that's dangerous. He thinks the staff in the supermarket are his very good friends because they speak nicely to him.
He walks out in front of cars, 'performing' looking both ways rather than actually doing it. He's still so terrified of dogs and flies that he leaps out into the traffic to avoid them - I've pulled him out the way of an oncoming car more than once.
He's been attacked several times in the play park by kids who don't know he's autistic and think he's 'weird'. Since he moved to mainstream school he's had ongoing problems with bullies.
He needs a carer, and while he continues to get DLA, that carer is me. If the government's plans go ahead and we lose the DLA, we'll also lose my Carer's Allowance and our Income Support. I'll be moved onto Job Seeker's Allowance and will have to take the first job that comes up - even though there's no child-care.
The last time I was at the Job Centre (I have to attend Work Focused Interviews) I asked my advisor if there was any suitable child-care at all that she knew of, because I'd like to get off benefits and at least work part-time if I can. Yes, she said, there's lots! Then she pulled out her big file, opened it up and found...nothing.
My son is due to have his DLA reassessed this year. The doctor says he still needs it and will support our application. With the government's cuts though, who knows what's going to happen to us? I'm waiting in terror for that big brown envelope to come through the door.
Carol's Story #spartacusreport #spartacusstories
I am a Mam, Gran-ma, Sister, Friend, Mischief maker, Auntie
and a whole host of things ( even a tw@t at times) I am 55 years old, though to
be honest Ive never really grown up, and thats the way that I like it. Right,
thats the meet and greets done, OH , hang on , I forgot to say this also, I am
disabled and I am most certainly Spartacus.
I was born disabled , with club foot in both feet ( the posh name being Bi-lateral Talipes ) and with one leg shorter than the other ( allthough now , the dispute now , is which leg is the shorter as Ive lost at least an inch in height ( sorry I still do old English measurements, except strangley for drill bits where metric does just as well).
I wnt to school throughout the 60s and early 70s bumbling along as you do and getting by. I got married and had two gorgeous kids, best thing I ever did. I stayed at home to look after them , and went back into education, to get study for a degree, to improve my employability ( I graduated in 2000 ) Throughout that time I recieved no state support of any kind, then I applied for the relatively new benefit called DLA ( introduced by the Conservatives) I was granted HRM because of my mobility issues , but not granted and personal care, and was even turned down at two other applications, so I left well alone, and generally bumbled along in life, trying to find work, and either being told that I was far too qualified, or didnt have any experience. Ho, hum.
Anyhow, I joined a cardmaking forum, oh maybe 5 years ago ( bear with me people the good bit is coming honestly) and made plans to visit a friend in Hull for a few days. So off I went to meet my friend. Everything went well, I was due to come home on the Tuesday ( 7th April) , so we went as my friend put it " Strolling along Hessle Road ". . . . . .
BANG - Down I went. My foot had caught the footplate of an oncoming chair being pushed by the incumbents carer. I had steped sideways to let them pass. My walking stick went heaven knows where, and Im lying outside a pharmacy in Hessle Rd, experiencing the most excruciating pain ( apart from the day I had my children, sorry kids).
The ambulance was called. I was xrayed, examined and admitted to Hull Royal Imfirmary (btw, I live 192 miles away from Hull in Cumbria) . Doped up to the eyeballs, to try and stop the pain, a Doctor came to the bed and explained that I had fractured my left neck a femur ( or as my friends say snapped her hip) and it would need at the very least 2 large Thomson screws to keep the bones together . ( oh and my friend ? The one I visited - She worked in the damn hospital !!)
My mobilty ? HAHAHAHAHAHAHAHAHA! My personal care ? Has gone to rat-crap. I now cannot walk down the stairs as I used to. I have to walk one step at a time. It takes me twice as long to get dressed. I cannot take my own boots off, by meself , I need help. Im cannot safely carry my Grand-baby ( and that hurts a lot). I use crutches, sticks and have an NHS tank, that has probably blown my left shoulder. I cannot do any of the things I used to do outside , and I live in one of the most beautiful parts of the country. My medication ? The side effects are amongst other things incontinence and unexplained diarohhea, and it can and takes you be surprise. You cannot stop it. ( The afforementioned tasks etc is just a miniscule amount of what I can no longer do)
I now get HRM and HRC . Maria Miller and the powers that be, want to take that away from me. They brand me a criminal, they tell lies about my compatriates and friends, what did we do , except survive ? And what for ? To be vilified, and harrased and deemed scum . Now, before oh gentle reader, you say " No, not in this day and age" I am sorry to say that the answer is " YES SADLY " and the main protagonists are the very people we would hope that would make the rules to keep us safe.
Thanks for reading, I do witter on, however remeber this I AM SPARTACUS ONE OF MANY.
Much Love Robomam aka Mewsli aka Carole
I was born disabled , with club foot in both feet ( the posh name being Bi-lateral Talipes ) and with one leg shorter than the other ( allthough now , the dispute now , is which leg is the shorter as Ive lost at least an inch in height ( sorry I still do old English measurements, except strangley for drill bits where metric does just as well).
I wnt to school throughout the 60s and early 70s bumbling along as you do and getting by. I got married and had two gorgeous kids, best thing I ever did. I stayed at home to look after them , and went back into education, to get study for a degree, to improve my employability ( I graduated in 2000 ) Throughout that time I recieved no state support of any kind, then I applied for the relatively new benefit called DLA ( introduced by the Conservatives) I was granted HRM because of my mobility issues , but not granted and personal care, and was even turned down at two other applications, so I left well alone, and generally bumbled along in life, trying to find work, and either being told that I was far too qualified, or didnt have any experience. Ho, hum.
Anyhow, I joined a cardmaking forum, oh maybe 5 years ago ( bear with me people the good bit is coming honestly) and made plans to visit a friend in Hull for a few days. So off I went to meet my friend. Everything went well, I was due to come home on the Tuesday ( 7th April) , so we went as my friend put it " Strolling along Hessle Road ". . . . . .
BANG - Down I went. My foot had caught the footplate of an oncoming chair being pushed by the incumbents carer. I had steped sideways to let them pass. My walking stick went heaven knows where, and Im lying outside a pharmacy in Hessle Rd, experiencing the most excruciating pain ( apart from the day I had my children, sorry kids).
The ambulance was called. I was xrayed, examined and admitted to Hull Royal Imfirmary (btw, I live 192 miles away from Hull in Cumbria) . Doped up to the eyeballs, to try and stop the pain, a Doctor came to the bed and explained that I had fractured my left neck a femur ( or as my friends say snapped her hip) and it would need at the very least 2 large Thomson screws to keep the bones together . ( oh and my friend ? The one I visited - She worked in the damn hospital !!)
My mobilty ? HAHAHAHAHAHAHAHAHA! My personal care ? Has gone to rat-crap. I now cannot walk down the stairs as I used to. I have to walk one step at a time. It takes me twice as long to get dressed. I cannot take my own boots off, by meself , I need help. Im cannot safely carry my Grand-baby ( and that hurts a lot). I use crutches, sticks and have an NHS tank, that has probably blown my left shoulder. I cannot do any of the things I used to do outside , and I live in one of the most beautiful parts of the country. My medication ? The side effects are amongst other things incontinence and unexplained diarohhea, and it can and takes you be surprise. You cannot stop it. ( The afforementioned tasks etc is just a miniscule amount of what I can no longer do)
I now get HRM and HRC . Maria Miller and the powers that be, want to take that away from me. They brand me a criminal, they tell lies about my compatriates and friends, what did we do , except survive ? And what for ? To be vilified, and harrased and deemed scum . Now, before oh gentle reader, you say " No, not in this day and age" I am sorry to say that the answer is " YES SADLY " and the main protagonists are the very people we would hope that would make the rules to keep us safe.
Thanks for reading, I do witter on, however remeber this I AM SPARTACUS ONE OF MANY.
Much Love Robomam aka Mewsli aka Carole
Subscribe to:
Posts (Atom)