I need your help, please!
The Disability judge will not believe that I am disabled because I do not have weekly cleaning help, but Social Services says that I cannot have cleaning help until I am awarded Disability benefits. Catch 22.
In pursuing this with Social Services, I'm informed that In-Home Support Services (IHSS) is a Federal program, the rules are made by the Federal government, and the only way to get help is to get the rules changed.
Because there is no blood test specifically for CFS/fibro, and because the tests which demonstrate real physical problems are only available in a few places in the US (often too far for seriously ill patients to travel), it can be as much as ten years from the time a CFS/FMS patient applies for Disability and the time they are finally approved. Meanwhile, if they don't have friends or family to help, they may find themselves in the same position as I -- being evicted for being too disabled to clean and too poor to hire a professional cleaner (who may be unwilling to do anything but dusting).
Although the government believes your friends, family and church should help you, I can tell you from numerous conversations with others that I am not the only disabled person who has been refused help from those sources. They believe that you should be able to get government help. Everyone points the finger elsewhere, but no one actually does anything useful.
So, I'm asking you to please do something useful. Please write to your Congressperson and Senators (and if you don't have one because you're outside the US, write to my Senators, Dianne Feinstein and Barbara Boxer) and urge them to revise the IHSS rules so that evaluation of the need for supportive services takes place immediately when SSDI is applied for, and not as much as ten years later when SSDI is finally approved. My situation proves that in that ten years that CFS/fibro patients are waiting for SSDI, they need support services -- they can't wait years to have their house cleaned or meals prepared or assistance with bathing.
CFS/fibro are real diseases with physical causes. One expert in both AIDS and CFIDS has observed that a CFS patient feels every day as badly as an AIDS patient in the last few months of life. Unfortunately, because CFS was ahead of the technological curve in the 1980s, many disability judges still have the perception that it's fakery, and believe that the person can work, and will return to work if their application is denied. (Trust me, over the past nearly-six years, I have made repeated attempts to work, and after 2-3 days was already too exhausted to get out of bed. If I could work, I would, but the doctors say that I cannot, and so does my experience.) I've run into a series of disability judges who refuse to accept the doctors' statements, because doing so would require them to change their minds about the veracity of CFS as a physical (not psychological) disability.
As Dr. Starlanyl says, if all blood tests are normal, it may simply mean the correct tests have not been done. In preliminary results of a poll being run by CFIDS.org, fully HALF of CFS patients have never had their fatigue professionally evaluated. A Functional Capacity Evaluation wasn't done, their doctors didn't even ask questions about the level of their fatigue. The problem isn't that the fatigue doesn't exist, it's that no one is putting test results in the medical records to support the patient's claims.
Although IHSS seems to believe that right up until the day you are ruled disabled by a judge, you are capable of taking care of yourself and your home, and magically, overnight, become incapable because you're now eligible for assistance, this is not the case.
Please don't let one more CFS patient be thrown out of a dirty house she can't clean herself -- write that letter to Congress today, urging that In Home Support Services be provided as soon as they become necessary, so that judges will not make the same erroneous determination, that I do not receive IHSS because I do not need help. Although he would like to believe that I have the ability to do all the cleaning myself, which would prove that I also have the ability to return to work, my current situation proves that I don't have the ability to clean -- what I have is the inability to get needed help ... not from friends, not from family, not from churches, and not from government.