tag:blogger.com,1999:blog-4941854812083391099.post4068790203091759192..comments2024-03-07T14:33:24.659+00:00Comments on Just ME: Some Days - All Days?Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-4941854812083391099.post-47142764137528990882016-07-18T23:32:34.118+01:002016-07-18T23:32:34.118+01:00Such difficult things to talk about Mary. No easy...Such difficult things to talk about Mary. No easy answers. People say we shouldn't compare ME to cancer, because (they say) cancer kills and ME doesn't. One look at Whitney Dafoe and other very severe patients should make it clear that ME can be just as scary as cancer. If only ME could attract the research funding and public sympathy of cancer. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-16975909980395171652016-07-17T20:38:00.689+01:002016-07-17T20:38:00.689+01:00I would rather have treatable cancer (including su...I would rather have treatable cancer (including surgeries) than this disease - but the ultimate question is terminal cancer. Is life imprisonment in solitary confinement better than hanging? Can't really say - but don't want either.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-36400760926396637672016-05-06T02:44:33.746+01:002016-05-06T02:44:33.746+01:00Yep, because 27 years ago they knew it was an infe...Yep, because 27 years ago they knew it was an infectious/immune disease-- the name change to CFIDS-- but they couldn't find agent x that was causing it. Like HIV causes AIDS -- then they just went back to saying its in your head-- and more and more people are sick. And we're much older-- we've aged out of the treatment protocols. Got half a life. Sometimes it's hard to not get depressed.Sharon gnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-49233025486776568582016-05-03T15:26:47.484+01:002016-05-03T15:26:47.484+01:00I think the "protection from complex thoughts...I think the "protection from complex thoughts" is quite a big thing. You have hit the nail on the head. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-16438267556168625272016-05-03T15:25:00.060+01:002016-05-03T15:25:00.060+01:00Such a long time to be so ill Suze_Dee - unimagina...Such a long time to be so ill Suze_Dee - unimaginable really for those who are healthy, or even like me only ill a few years. And yes it is an unpredictable illness. Wishing you better times soon. xxSally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-12259105360759807262016-05-03T15:19:23.946+01:002016-05-03T15:19:23.946+01:00I understand. Hopefully things are changing now, ...I understand. Hopefully things are changing now, but for those who have been ill much longer than me, it has been too long a wait. ((Hugs))Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-24456683905179852602016-05-03T15:16:45.515+01:002016-05-03T15:16:45.515+01:00Challenge ruling on disability - often people are ...Challenge ruling on disability - often people are only getting the support they need once it is declined & then that decision challenged. It seems they almost turn you down first time on principle. :( <br /><br />As for ME research etc. I am optimistic that there is some change in the air... xxSally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-47897058892989995442016-05-02T08:42:41.648+01:002016-05-02T08:42:41.648+01:00I believe some are afraid of "it", and d...I believe some are afraid of "it", and do fear it's contagious, and distance themselves partially because of that. They may only know <br />one or a few tho, and no external confirmation, so just staying away is their "protection". Also, protection from complex thoughts, listening to us, or research and discernment .:(<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-82212396937699599112016-05-02T08:36:20.676+01:002016-05-02T08:36:20.676+01:00There is also the UK government who if you are no...There is also the UK government who if you are not frail and completely bedbound will refuse Disability support and on my report claimed I was lying about everything. <br /><br />And they wanted PACE to have the current result which is that the illness is thought of as a mental illness and all they have to do is prescribe exercise and a shrink to fix us (which then becomes they provide neither of those and just blame us for being lazy/unwilling instead). <br /><br />I have said before that if anyone says "at least it's not cancer" to me in person they will face a very bad time. This is a fate worse than cancer and I'm left with just enough physical and mental ability to realise the cage I'm locked in, and that the people who should have the keys are sneering at me instead of helping. I can rattle the bars and at 34 I'm pretty sure that's all I have ahead of me. More fatigue, pain and frustration. Sufferernoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-24511470109442030992016-05-02T06:22:21.194+01:002016-05-02T06:22:21.194+01:00Wow, that is such a profound thought and I had nev...Wow, that is such a profound thought and I had never thought of it in those terms. The general population should be more afraid, after all this could happen to anyone and then they too would be not only battling with an incurable disease but somehow what I find worse is societies disbelief and intolerance of it. <br /><br />I got sick in 1982 after glandular fever and have lived a roller coaster of health since. I have been "well" by my standards - not societies but now I am on a four year slide and am terrified at what point I will hit bottom. And they should be afraid because I could so easily be them. Anonymoushttps://www.blogger.com/profile/04404785135526313516noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-82144237715959713552016-05-01T17:12:26.108+01:002016-05-01T17:12:26.108+01:00for years I thought I as going to get better, hopi...for years I thought I as going to get better, hoping they would find something that actually had a cure but instead I have gone down hill until I am now housebound except for docs visits to check for other things that do happen. I am turned away because they can't do anything for me or send me to a shrink which I would gladly go if that were the case. It is a very lonely existence and we get taken advantage of by those who are using our desperation to make money, especially docs who claim to have had it but got cured by taking their vitamins, eating gluten free and buying their books.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-44161814900159828422016-05-01T09:58:07.536+01:002016-05-01T09:58:07.536+01:00Yes too true. And because the media world over la...Yes too true. And because the media world over latch onto the notion that we are "tired" as if somehow a couple of lifestyle changes could change that - and so others discount the illness as somehow being our own fault. Meh. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-60327528802960208222016-05-01T09:56:04.175+01:002016-05-01T09:56:04.175+01:00Thank you. Together we can make a noise and hopefu...Thank you. Together we can make a noise and hopefully change will follow?Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-64585882870191491842016-05-01T09:55:10.981+01:002016-05-01T09:55:10.981+01:0027 years! (((Hugs))) I am such a beginner with a...27 years! (((Hugs))) I am such a beginner with all this. xx<br /><br />I think it is the apathy of those with the power to make real research happen that is so depressing. That and the thwarting of any funding promised towards the psyche approach. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-26263843882672592912016-05-01T04:23:00.728+01:002016-05-01T04:23:00.728+01:00You ask a lot of good questions, most of which hav...You ask a lot of good questions, most of which have no one real answer, except this one:<br /><br />"And why are healthy people not more afraid of this illness?"<br /><br />Because it's not contagious. <br /><br />I think if it were, as with HIV/AIDS, then research would've been there for us decades ago.<br /><br />Unfortunately...Christinenoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-82569569504125305372016-04-30T22:21:43.418+01:002016-04-30T22:21:43.418+01:00All days here, too, of course.
Well said, SallyAll days here, too, of course.<br />Well said, Sallymotherinlawhttps://www.blogger.com/profile/06953795991444498629noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-80131412179250771122016-04-30T21:33:03.957+01:002016-04-30T21:33:03.957+01:00I'm highly dysfunctional, rarely leave the hou...I'm highly dysfunctional, rarely leave the house, and have been losing mobility lately (plus just caught myself depressed again, which will need working out).<br /><br />And yet, as you consider yourself, I am one of the lucky ones.<br /><br />If everything I do works out right, I can write a bit every day, and the bits accumulate, and I'm working on my second massive novel - as other with ME/CFS can't even sit up in bed to watch TV.<br /><br />I hate to complain, but I am as far from normal as our most severe patients are from me, and it scares the heck out of me how far I can still fall.<br /><br />I had high hopes for 2016, but unless there is some real luck, all that seems to be happening is that more peddlers are hopping on our train - to try to sell us THEIR wares, not to find out what we need and get it to us somehow.<br /><br />I'm probably maligning some hard-working researchers somewhere, but it seems there are MORE useless ideas and treatments now than when I got sick 27 years ago and had to give up a good career as a physics researcher at Princeton.<br /><br />They STILL have no more real idea than then.ABEhrhardthttps://www.blogger.com/profile/17211038591900883672noreply@blogger.com