Reading some of these posts I can agree with most!
My fiancé tries his best but I think because I havnt got a gaping wound or wrapped up with a blanket with a fever he forgets that I am ill.
I wear fake tan, makeup, dress nice and make my self look as normal as possible. I feel that just because we are ill doesnt mean we dont have pride.
I get sick of cancer reasearc/mackmillan adverts. There is 1 advert at a bust stop that says "having a bad day?" and I always think YEAH I AM! We dont have mackmillan to call when we have a bad day, we have no one, we have to rely on our families to pick us back up.
If it wasnt for my mother, I would have probably cracked up many years ago! She doesnt quite understand, she tries, but her way is to help me with laundry and cleaning bless her!
My friends dont call me anymore, I never get invited out - they call me boring, they are truely ignorant to it. My best mate always asks when am I gonna have kids LOL! Erm unless someone caughs us a kidney mate!
Even the DLA dont understand - beats me why they assume dialysis is treatment - I agree with an earlier post - its LIFE SUPPORT. even so its a temporary fix. long term our bodies are fluffed!
Im not on dialysys yet but my results yetsreday was at 8%. I think as soon as people see that tube in my stomach they may start giving me some slack.
Do healthy people understand?
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amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
I know what you mean about the cancer charities. They do seem to get all the press coverage and when there's a Race For Life etc it always seems to be for cancer charities. Now I'm not saying they don't deserve it or that we are any more deserving than they are but it is a shame we don't get much of that sort of publicity.
I was shopping in Asda the other day and a young lad was on an exercise bike in the doorway and others were shaking buckets at me to donate for him to ride it for x number of hours that day. I'm sorry but I just walked past as soon as I saw the collection was once again for a cancer charity.
It's like- in your face all the time- that and the RSPCA (who beg for money for puppies and kittens but pay their chief exec's six figure salaries). It seems the ones who get the most donations are the ones who can afford to advertise on prime time tv and at every bus stop in the land. I have supported my local pet rehoming charity instead and when I buy on eBay donate to lesser charities there including kidney ones.
It always seems when someone is doing a long run or cycle ride or parachute jump etc , its always in remembrance of someone who has died of cancer. I'm not heartless but there are so very many others who die every day and go completely un-noticed as they died of a 'less prominent' disease.
I don't know. Maybe it is cos I wear lots of make-up and self tan- maybe it's cos I make the effort to go out to work and appear normal. Maybe that's why no-one wants to do a fun run to raise money for a charity to help people like me???
I was shopping in Asda the other day and a young lad was on an exercise bike in the doorway and others were shaking buckets at me to donate for him to ride it for x number of hours that day. I'm sorry but I just walked past as soon as I saw the collection was once again for a cancer charity.
It's like- in your face all the time- that and the RSPCA (who beg for money for puppies and kittens but pay their chief exec's six figure salaries). It seems the ones who get the most donations are the ones who can afford to advertise on prime time tv and at every bus stop in the land. I have supported my local pet rehoming charity instead and when I buy on eBay donate to lesser charities there including kidney ones.
It always seems when someone is doing a long run or cycle ride or parachute jump etc , its always in remembrance of someone who has died of cancer. I'm not heartless but there are so very many others who die every day and go completely un-noticed as they died of a 'less prominent' disease.
I don't know. Maybe it is cos I wear lots of make-up and self tan- maybe it's cos I make the effort to go out to work and appear normal. Maybe that's why no-one wants to do a fun run to raise money for a charity to help people like me???
My one life added to my cat's nine make a perfect ten.
Unfortunately these days to get any prominence in the public eye an illness seems to need to be attached to a "celebrity" and you don't hear many of those admitting to a kidney disease. I wouldn't wish it on anyone but it does sometimes feel that it's 'shameful' or not 'popular' or 'cool' to have kidney problems and it is an invisible disease until you are in renal failure proper. Even then at stage 5 and 6% function I never looked sick and nobody could tell I had kidney failure.
Walter, 15 september 2009
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amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
By the way, i don"t think that we are knocking all the "live life, Give life" people on here when we are talking about charity. I thimk that it is even worse here in the Us for publicity. I can"t remember the the last time i saw an advert. Mind you people go into bankruptcy here very quickly here paying fot theit familiy"s cancer treatment whereas kidmey patients spend all their savings paying for prescriptions (in the absence of good insuance) until they qualify for medicaid., so again it" s the slow and insidious plus a different mindset towards being people bein self-reliant for healthcare (some people"s attitudes towards healthcare reform duiring the primary elections were shocking).
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eliznew412
- Posts: 440
- Joined: Sat Aug 05, 2006 7:16 pm
- Location: Bristol UK
I think that the contribution of the caring of 'housewives' - showing the careful thoughtfulness and insights in support of anyone ill in the family has largely been lost because of the pressure to go out to work. It is a loss to young patients of both sexes and to partners and extended family. I'm not saying its wrong but I am saying it has had a tremendous impact on anyone who needs that extra bit of TLC/ human insight/ advocacy. God only help the poorly housewife going out to work!
Anything that is more commonly experienced such as cancer tends to gain more advocacy, support etc. However I think there is a real case for organisations supporting all long-term conditions to work together. More and more people are living longer and longer with chronic conditions and the only reason for this trend slowing will be social and economic reasons. These are hot political issues that affect those with all chronic medical conditions and ironically it is in pressured economic times that it is easier to get these points across to politicians.
So many people can rightly get very emotionally mushy over sick children but success means that more and more of those poorly children live to have chronic conditions in adulthood. With increasing numbers there is a real need to understand the emotional impact and the need to belong to mainstream society. Facing reality is not was human beings are very good at and sensitivity is not seen to be ‘cool’ in a go getting society. It takes courage, clout and representation to maintain funding for research and address the needs of those with chronic conditions. I was surprised how difficult I found it to 'get real' even with doctors in the academic setting of the Severn Deanery but it is at least a start. Self recognition/ realisation is a very important step in order to seek real advocacy and representation and any funding for better medical treatments.
Anything that is more commonly experienced such as cancer tends to gain more advocacy, support etc. However I think there is a real case for organisations supporting all long-term conditions to work together. More and more people are living longer and longer with chronic conditions and the only reason for this trend slowing will be social and economic reasons. These are hot political issues that affect those with all chronic medical conditions and ironically it is in pressured economic times that it is easier to get these points across to politicians.
So many people can rightly get very emotionally mushy over sick children but success means that more and more of those poorly children live to have chronic conditions in adulthood. With increasing numbers there is a real need to understand the emotional impact and the need to belong to mainstream society. Facing reality is not was human beings are very good at and sensitivity is not seen to be ‘cool’ in a go getting society. It takes courage, clout and representation to maintain funding for research and address the needs of those with chronic conditions. I was surprised how difficult I found it to 'get real' even with doctors in the academic setting of the Severn Deanery but it is at least a start. Self recognition/ realisation is a very important step in order to seek real advocacy and representation and any funding for better medical treatments.
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Helen Rambaut
- Posts: 745
- Joined: Mon Feb 13, 2006 11:34 pm
- Location: London
do healthy people understand?
The "trouble with cancer" being a popular cause is that eg 40,000 women a year are diagnosed with breast cancer; one in 3 of the population will get a diagnosis of cancer in their lifetime; one in 4 will die from a cancer illness.
That means it is so much bigger than our own renal disease and that's why so many more people know someone or has a family member who's recently been lost to cancer. In the end I think all people who suffer from disease have to overcome similar hurdles.
At every collecting tin I put some money in and tell them about the organ donor register (& living kidney donation) on the basis that they must be kind & charitable people and please tell their friends. Telling them I can give this £1 because I am alive and why.
Some tins on the street in London are chuggers I heard from my friend who runs the Friends at the Royal Brompton & Harefield. One of these collects for the "painted children".
Then with the chuggers who want you to sign up for a commitment (chuggers are the ones who are paid by the charity) I tell them I am already giving my time and money to make things better for children (School Governor for school with high % of children on free school meals), kidney patients, cancer patients.
Agree that for organ donation it seems like an uphill battle doesnt it? As kidney patients we have to find time (& energy ha ha) to contact the NKF and other bodies to work on our behalf and fund raise to improve treatment etc. Best place I have found for advice and support is here.
Helen
That means it is so much bigger than our own renal disease and that's why so many more people know someone or has a family member who's recently been lost to cancer. In the end I think all people who suffer from disease have to overcome similar hurdles.
At every collecting tin I put some money in and tell them about the organ donor register (& living kidney donation) on the basis that they must be kind & charitable people and please tell their friends. Telling them I can give this £1 because I am alive and why.
Some tins on the street in London are chuggers I heard from my friend who runs the Friends at the Royal Brompton & Harefield. One of these collects for the "painted children".
Then with the chuggers who want you to sign up for a commitment (chuggers are the ones who are paid by the charity) I tell them I am already giving my time and money to make things better for children (School Governor for school with high % of children on free school meals), kidney patients, cancer patients.
Agree that for organ donation it seems like an uphill battle doesnt it? As kidney patients we have to find time (& energy ha ha) to contact the NKF and other bodies to work on our behalf and fund raise to improve treatment etc. Best place I have found for advice and support is here.
Helen
I have had more family members sick with cancer than renal probs for sure. I have seen how aweful cancer can be, unfortunatly I am more like Fabrette, I used to donate to cancer research by giving clothes etc for them to sell. Now I wander past the charities box and moan in my head.
I have done loads of charity work even before my condition worsened (which is usually when people decide to take action). I did the 3 peaks walk for motor neuron foundation which is a really worthy charity along with Kidney reasearch ofc!
No one really cares unless it directly effects them, but often as we know its that old story of 'if ur willing to take then you should be willing to give'
I have done loads of charity work even before my condition worsened (which is usually when people decide to take action). I did the 3 peaks walk for motor neuron foundation which is a really worthy charity along with Kidney reasearch ofc!
No one really cares unless it directly effects them, but often as we know its that old story of 'if ur willing to take then you should be willing to give'
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amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
Incapacity benefit
[quote="Jill"]The most outrageous comment I received was when I went for a medical when I was applying for Incapacity Benefit.....
Did you get incapacity benefit? I tried and was refused as I was capable of work.
I have been going round in circles since I retired from the police force in 2007. I tried to register at the JobCentre as unemployed and was told I wouldn't get jobseekers allowance as I was in receipt of a pension. I then mentioned that I was on dialysis and was immediately told to apply for incapacity benefit as I was too ill to work.
I applied for incapacity benefit, went for the medical and in due time was refused incapacity benefit, because I was capable of work, and told to apply for jobseekers allowance. I returned to the Job centre and was told I wouldn't get any allowance because I was in receipt of a pension. In the interview I mentioned dialysis and was told to apply for incapacity benefit. I explained that I had already applied and had been refused, at this you could visibly see the shutters come down on the interviewer. I decided I had enough of this merry go round and didn't bother trying to claim again.
As mentioned in earlier posts it appears that if you appear well and have no visible injuries you are treated with indifference, and people expect you perform duties as well as an person in perfect health.
Did you get incapacity benefit? I tried and was refused as I was capable of work.
I have been going round in circles since I retired from the police force in 2007. I tried to register at the JobCentre as unemployed and was told I wouldn't get jobseekers allowance as I was in receipt of a pension. I then mentioned that I was on dialysis and was immediately told to apply for incapacity benefit as I was too ill to work.
I applied for incapacity benefit, went for the medical and in due time was refused incapacity benefit, because I was capable of work, and told to apply for jobseekers allowance. I returned to the Job centre and was told I wouldn't get any allowance because I was in receipt of a pension. In the interview I mentioned dialysis and was told to apply for incapacity benefit. I explained that I had already applied and had been refused, at this you could visibly see the shutters come down on the interviewer. I decided I had enough of this merry go round and didn't bother trying to claim again.
As mentioned in earlier posts it appears that if you appear well and have no visible injuries you are treated with indifference, and people expect you perform duties as well as an person in perfect health.
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Helen Rambaut
- Posts: 745
- Joined: Mon Feb 13, 2006 11:34 pm
- Location: London
incapacity benefit
The first place showed ignorance. Just because someone is on dialysis does not mean they are incapable of work.
Again just because someone is able to work while on dialysis it does not mean that everyone on dialysis is able to work.
The same applies to disability living allowance. When filling out the form you need to have expert advice and describe your worst days. And appeal if you are turned down.
When all that's said and done I did work through my time on dialysis - felt like xxxx all the time. But I didnt feel any better when I wasnt working.
Best advice is to see a renal social worker to help navigate through entitlements minefield.
Helen
Again just because someone is able to work while on dialysis it does not mean that everyone on dialysis is able to work.
The same applies to disability living allowance. When filling out the form you need to have expert advice and describe your worst days. And appeal if you are turned down.
When all that's said and done I did work through my time on dialysis - felt like xxxx all the time. But I didnt feel any better when I wasnt working.
Best advice is to see a renal social worker to help navigate through entitlements minefield.
Helen
After doing a bit of research it appears that being on haemodialysis in a hospital unit is one of the few conditions that should get you automatically put into the support group for ESA without even having a medical. I am not sure about home dialysis. So I would have thought that the old incapacity benefit would have had similar conditions. I know that only 10% of people who apply for ESA get put into the support group so its important that when the form is filled in stress that you are on dialysis describing how it affects your health.