Another brave speaker who put her symptoms across well, problem is she “looks as expected complete with wheelchair” (stereotype) we really need someone who looks and acts completely “normal” (but you don’t look sick)
Hers was definitely the most impressive speech from Saturday as far as I'm concerned. Her comments about being able to pick up a pound coin vs not being able to pick up a pound coin after 20 minutes typing is exactly the kind of thing people need to be reminded of.
I have a question that perhaps someone could answer for me. Why is this all happening when it is not even law yet? why wasn't something done to halt progression?
I cried while watching this. I have had MS for 12 years now. I am at the 'tail-end' of RRMS and about to go SPMS which is a fulltime wheelie. She looks amazing! I guess she has a PA which I don't. I am a single parent with two young boys, which is beyond difficult believe me. I am on benefits, daily life is ,well I do not have the words to explain it. I have made plans for my kids to be looked after, I know I couldn't hold down a job in my current state, so with the torys redifining disabilty , I have made the decision to end it when my assessment comes up, I know I won't get a fair trial and the stress is making my condition worse. I think about it night and day-2013 is the year I go. My kids are young enough to forget and hopefully when the are older they can understand and forgive me. I don't want any hysterical dramactics here, It's just with the way my MS is heading and the Torys playing god I can't cope with it all anymore. To think that I didnt claim SP money because I get DLA and it in my opinion it was pure greed to take everything makes me feel foolish now. I wouldnt wish MS on anyone but for Call me Dave I would make an exception!
She could have been describing me when she talked about the fatigue so eloquently and the horrible uncertainty of symptoms which could appear at any moment. This is the first speech which actually made me cry.
Only difference between her and me is that I am "lucky" enough to have "enough wrong" that I can safely reply "yes" to the "picking up the coin" question and still get put in the support group.
I disagree with the first comment. Yes, she is using a mobility scooter. But she looks completely normal. She is exactly the type of person the government is expecting to go back to work. Using their line of thinking, since the DDA is now in place, using a mobility aid is not a reason not to work, therefore she should be working.
I am not sure what “tick box” I fit in to. I have been very ill for many years my life was very different prior to onset of illness unrecognisable in fact. I have no mobility aid even if I had an electric scooter I am too ill to use it. Most of the time I am too ill to even be a passenger in car. I can pick up a coin at times when “less ill”. I can pick up a pen but can no longer write with one. I can at times walk short distances even up and down stairs. I can occasionally type as I am doing now with laptop next to me on bed. I had to give up my job and career years ago due to ill health what “job” could I now do?
To anonymous @12:32 I don't know if you share my sense of humour, but my friends came up with a list of possible jobs for myself. They include: Doorstop Draft excluder Hatrack/coatstand Light on/off switcher (similar to lift attendants) Novelty ornamental floor rug (for ATOS offices?) Mattress/bed tester (I like this one ;) )
Unfortunately none of us have come up with anything remotely sensible!
To LoopyS I do :) you forced a painful laugh or more accurately wheezes from me! I was thinking for me maybe the bed tester as I have much relevant experience too!
Well nick clegg's speech is going down very well and a very solid performance at the liberal conference
Having said that not one word about the sick and disabled which is a major blow as he addressed great things for everyone else in society but just left the sick and disabled out from any hope
To anonymous who posted further up. I am so very sorry that your ms is so bad. I am finding it hard to believe that no one has picked up on your comment regarding your intention to end your life.
Is there anyway at all that anyone can get any support/help/assistance for anon.
I send you genuine empathy. I cannot work out on my blog how to put in a separate email address so that people can contact me other than via comments. If you need someone to talk to, I hope Sue wouldn't mind if you emailed her. I will email her with my email address and she could give it to you. Sue I hope this is OK. I just cannot ignore the comment. Someone must be able to help. With regard, to the speech, I thought it good. I don't think it is entirely fair to say it was a shame that she didn't walk on to 'show' a complete invisible disability as it is obviously her only option. I have two family members with epilepsy apart from my condition which I talk of occassionally on my blog and it would be difficult for anyone to see their invisible disability on the conference forum apart from having a seizure on the stage. I do think more people are aware that invisible disability does exist and that it is not all about wheelchair use or not. I guess some will disagree as is only fair in a democracy. On the whole my disability is invisible apart from when I have to wear my leg braces, hand supports etc. no one can see my pain. I can pick up a coin, on the whole, whether I drop it again is not up to me its whether my brain is sending the right messages or not in that moment. Then if it fell on the floor I would not be able to pick it up. That aside, she did look so well, but I think she put her point across well. Looking so well made her point I think. I think it would have been tasteless to have a video going in the background of her having a bad day, completely incapacitated. Dignity is part of the issue in the current climate I think. We are being treated in an inhumane way. I think it should be that claimants should not necessarily require a medical and ATOS should start cutting out unnecessary expensive work by actually believing medical professionals documentary evidence/reports on a patients condition. Mine is rare and and an ATOS employee would simply not have the medical knowledge to assess appropriately. Illness and disability unfortunately does not always fit into a tick in a box. I can walk but I am in unbearable pain before I do for example. I have to take zomorph just to be able to start a day without crying in pain. So my medication does not cure me or make me fit for work. I think her speech was excellent.
To anonymous who posted further up. I am so very sorry that your ms is so bad. I am finding it hard to believe that no one has picked up on your comment regarding your intention to end your life.
Is there anyway at all that anyone can get any support/help/assistance for anon.
I send you genuine empathy. I cannot work out on my blog how to put in a separate email address so that people can contact me other than via comments. If you need someone to talk to, I hope Sue wouldn't mind if you emailed her. I will email her with my email address and she could give it to you. Sue I hope this is OK. I just cannot ignore the comment. Someone must be able to help. With regard, to the speech, I thought it good. I don't think it is entirely fair to say it was a shame that she didn't walk on to 'show' a complete invisible disability as it is obviously her only option. I have two family members with epilepsy apart from my condition which I talk of occassionally on my blog and it would be difficult for anyone to see their invisible disability on the conference forum apart from having a seizure on the stage. I do think more people are aware that invisible disability does exist and that it is not all about wheelchair use or not. I guess some will disagree as is only fair in a democracy. On the whole my disability is invisible apart from when I have to wear my leg braces, hand supports etc. no one can see my pain. I can pick up a coin, on the whole, whether I drop it again is not up to me its whether my brain is sending the right messages or not in that moment. Then if it fell on the floor I would not be able to pick it up. That aside, she did look so well, but I think she put her point across well. Looking so well made her point I think. I think it would have been tasteless to have a video going in the background of her having a bad day, completely incapacitated. Dignity is part of the issue in the current climate I think. We are being treated in an inhumane way. I think it should be that claimants should not necessarily require a medical and ATOS should start cutting out unnecessary expensive work by actually believing medical professionals documentary evidence/reports on a patients condition. Mine is rare and and an ATOS employee would simply not have the medical knowledge to assess appropriately. Illness and disability unfortunately does not always fit into a tick in a box. I can walk but I am in unbearable pain before I do for example. I have to take zomorph just to be able to start a day without crying in pain. So my medication does not cure me or make me fit for work. I think her speech was excellent.[/QUOTE]
I to am so sorry that no one has stepped in to this blog who could offer you better advice hopefully George will step in and offer some I myself have to be very careful in what i get involved in as i am not at all well myself and any form of stress could kill me Reading your story is indeed very stressful for every normal person but as the government aren't normal we will have to take what they give us i guess
I have been told that the government will make things as hard as possible for benefit claimants so they they just keep going round and round in a never ending loop so that they eventually give up
I'm also so very sorry I didn't see your comment. For some reason this thread hasn't been coming up in my alerts, so I hadn't seen any of the comments.
I have felt like you. I know that having children adds an enormous pain and burden to an already terrible illness. There is a guilt and a fear that never goes away.
I also know that my children are the one thing that gives me hope and a reason to go on. They make me smile, even through tears, they add joy to my life.
Please, please, try to find just a little strength to pick up the phone today. Call the CAB - they're amazing and if there is any help or support you are entitled to, they can arrange it all for you.
Whatever happens, talk to someone. Your assessment may be nowhere near as stressful as you imagine. Some people are even being awarded the support group without assessment now if their forms are detailed and accompanied by lots of supporting evidence. The CAB can help you with the forms when they come.
You are not alone. We are thousands and we are here or on twitter, always available to give support or even make you smile. We all know your fear and the great challenges of a life of illness.
Another brave speaker who put her symptoms across well, problem is she “looks as expected complete with wheelchair” (stereotype) we really need someone who looks and acts completely “normal” (but you don’t look sick)
ReplyDeleteHers was definitely the most impressive speech from Saturday as far as I'm concerned. Her comments about being able to pick up a pound coin vs not being able to pick up a pound coin after 20 minutes typing is exactly the kind of thing people need to be reminded of.
ReplyDeleteHave to agree with first comment even though it was a great speech, and thank you once again mr potter
ReplyDeleteI have a question that perhaps someone could answer for me.
ReplyDeleteWhy is this all happening when it is not even law yet? why wasn't something done to halt progression?
I cried while watching this. I have had MS for 12 years now. I am at the 'tail-end' of RRMS and about to go SPMS which is a fulltime wheelie. She looks amazing! I guess she has a PA which I don't. I am a single parent with two young boys, which is beyond difficult believe me. I am on benefits, daily life is ,well I do not have the words to explain it. I have made plans for my kids to be looked after, I know I couldn't hold down a job in my current state, so with the torys redifining disabilty , I have made the decision to end it when my assessment comes up, I know I won't get a fair trial and the stress is making my condition worse. I think about it night and day-2013 is the year I go. My kids are young enough to forget and hopefully when the are older they can understand and forgive me. I don't want any hysterical dramactics here, It's just with the way my MS is heading and the Torys playing god I can't cope with it all anymore. To think that I didnt claim SP money because I get DLA and it in my opinion it was pure greed to take everything makes me feel foolish now.
ReplyDeleteI wouldnt wish MS on anyone but for Call me Dave I would make an exception!
She could have been describing me when she talked about the fatigue so eloquently and the horrible uncertainty of symptoms which could appear at any moment. This is the first speech which actually made me cry.
ReplyDeleteOnly difference between her and me is that I am "lucky" enough to have "enough wrong" that I can safely reply "yes" to the "picking up the coin" question and still get put in the support group.
I disagree with the first comment. Yes, she is using a mobility scooter. But she looks completely normal. She is exactly the type of person the government is expecting to go back to work. Using their line of thinking, since the DDA is now in place, using a mobility aid is not a reason not to work, therefore she should be working.
I am not sure what “tick box” I fit in to. I have been very ill for many years my life was very different prior to onset of illness unrecognisable in fact. I have no mobility aid even if I had an electric scooter I am too ill to use it. Most of the time I am too ill to even be a passenger in car. I can pick up a coin at times when “less ill”. I can pick up a pen but can no longer write with one. I can at times walk short distances even up and down stairs. I can occasionally type as I am doing now with laptop next to me on bed. I had to give up my job and career years ago due to ill health what “job” could I now do?
ReplyDeletehttp://www.mind.org.uk/news/5668_millions_spent_informing_sick_and_disabled_their_benefits_might_stop-before_welfare_bill_is_even_passed[/QUOTE]
ReplyDeleteTo anonymous @12:32
ReplyDeleteI don't know if you share my sense of humour, but my friends came up with a list of possible jobs for myself.
They include:
Doorstop
Draft excluder
Hatrack/coatstand
Light on/off switcher (similar to lift attendants)
Novelty ornamental floor rug (for ATOS offices?)
Mattress/bed tester (I like this one ;) )
Unfortunately none of us have come up with anything remotely sensible!
To LoopyS I do :) you forced a painful laugh or more accurately wheezes from me!
ReplyDeleteI was thinking for me maybe the bed tester as I have much relevant experience too!
I thought "opiate quality control" might suit me. Or possibly "DWP incredulity awareness manager" "poverty cook" or "vomit advisor" - Any ideas?
ReplyDeleteFor Sue there is only one suitable job a Saint!
ReplyDelete"vomit advisor" yep we would both be ok on that one sue as we are both specialists in this area
ReplyDeleteha ha fourbanks ...good one .
ReplyDeleteWell nick clegg's speech is going down very well and a very solid performance at the liberal conference
ReplyDeleteHaving said that not one word about the sick and disabled which is a major blow as he addressed great things for everyone else in society but just left the sick and disabled out from any hope
Truly tragic on what was an excellent speech
To anonymous who posted further up. I am so very sorry that your ms is so bad. I am finding it hard to believe that no one has picked up on your comment regarding your intention to end your life.
ReplyDeleteIs there anyway at all that anyone can get any support/help/assistance for anon.
I send you genuine empathy. I cannot work out on my blog how to put in a separate email address so that people can contact me other than via comments. If you need someone to talk to, I hope Sue wouldn't mind if you emailed her. I will email her with my email address and she could give it to you. Sue I hope this is OK. I just cannot ignore the comment. Someone must be able to help.
With regard, to the speech, I thought it good. I don't think it is entirely fair to say it was a shame that she didn't walk on to 'show' a complete invisible disability as it is obviously her only option. I have two family members with epilepsy apart from my condition which I talk of occassionally on my blog and it would be difficult for anyone to see their invisible disability on the conference forum apart from having a seizure on the stage. I do think more people are aware that invisible disability does exist and that it is not all about wheelchair use or not. I guess some will disagree as is only fair in a democracy. On the whole my disability is invisible apart from when I have to wear my leg braces, hand supports etc. no one can see my pain. I can pick up a coin, on the whole, whether I drop it again is not up to me its whether my brain is sending the right messages or not in that moment. Then if it fell on the floor I would not be able to pick it up. That aside, she did look so well, but I think she put her point across well. Looking so well made her point I think. I think it would have been tasteless to have a video going in the background of her having a bad day, completely incapacitated. Dignity is part of the issue in the current climate I think. We are being treated in an inhumane way. I think it should be that claimants should not necessarily require a medical and ATOS should start cutting out unnecessary expensive work by actually believing medical professionals documentary evidence/reports on a patients condition. Mine is rare and and an ATOS employee would simply not have the medical knowledge to assess appropriately. Illness and disability unfortunately does not always fit into a tick in a box. I can walk but I am in unbearable pain before I do for example. I have to take zomorph just to be able to start a day without crying in pain. So my medication does not cure me or make me fit for work. I think her speech was excellent.
[QUOTE]Achelois said...
ReplyDeleteTo anonymous who posted further up. I am so very sorry that your ms is so bad. I am finding it hard to believe that no one has picked up on your comment regarding your intention to end your life.
Is there anyway at all that anyone can get any support/help/assistance for anon.
I send you genuine empathy. I cannot work out on my blog how to put in a separate email address so that people can contact me other than via comments. If you need someone to talk to, I hope Sue wouldn't mind if you emailed her. I will email her with my email address and she could give it to you. Sue I hope this is OK. I just cannot ignore the comment. Someone must be able to help.
With regard, to the speech, I thought it good. I don't think it is entirely fair to say it was a shame that she didn't walk on to 'show' a complete invisible disability as it is obviously her only option. I have two family members with epilepsy apart from my condition which I talk of occassionally on my blog and it would be difficult for anyone to see their invisible disability on the conference forum apart from having a seizure on the stage. I do think more people are aware that invisible disability does exist and that it is not all about wheelchair use or not. I guess some will disagree as is only fair in a democracy. On the whole my disability is invisible apart from when I have to wear my leg braces, hand supports etc. no one can see my pain. I can pick up a coin, on the whole, whether I drop it again is not up to me its whether my brain is sending the right messages or not in that moment. Then if it fell on the floor I would not be able to pick it up. That aside, she did look so well, but I think she put her point across well. Looking so well made her point I think. I think it would have been tasteless to have a video going in the background of her having a bad day, completely incapacitated. Dignity is part of the issue in the current climate I think. We are being treated in an inhumane way. I think it should be that claimants should not necessarily require a medical and ATOS should start cutting out unnecessary expensive work by actually believing medical professionals documentary evidence/reports on a patients condition. Mine is rare and and an ATOS employee would simply not have the medical knowledge to assess appropriately. Illness and disability unfortunately does not always fit into a tick in a box. I can walk but I am in unbearable pain before I do for example. I have to take zomorph just to be able to start a day without crying in pain. So my medication does not cure me or make me fit for work. I think her speech was excellent.[/QUOTE]
I to am so sorry that no one has stepped in to this blog who could offer you better advice hopefully George will step in and offer some
I myself have to be very careful in what i get involved in as i am not at all well myself and any form of stress could kill me
Reading your story is indeed very stressful for every normal person but as the government aren't normal we will have to take what they give us i guess
I have been told that the government will make things as hard as possible for benefit claimants so they they just keep going round and round in a never ending loop so that they eventually give up
Anonymous 10.30
ReplyDeleteI'm also so very sorry I didn't see your comment. For some reason this thread hasn't been coming up in my alerts, so I hadn't seen any of the comments.
I have felt like you. I know that having children adds an enormous pain and burden to an already terrible illness. There is a guilt and a fear that never goes away.
I also know that my children are the one thing that gives me hope and a reason to go on. They make me smile, even through tears, they add joy to my life.
Please, please, try to find just a little strength to pick up the phone today. Call the CAB - they're amazing and if there is any help or support you are entitled to, they can arrange it all for you.
Whatever happens, talk to someone. Your assessment may be nowhere near as stressful as you imagine. Some people are even being awarded the support group without assessment now if their forms are detailed and accompanied by lots of supporting evidence. The CAB can help you with the forms when they come.
You are not alone. We are thousands and we are here or on twitter, always available to give support or even make you smile. We all know your fear and the great challenges of a life of illness.
You are always valuable, always.
That woman is an inspiration!
ReplyDelete