What I can say is this, and I am very clear on my idea here because my life has been altered by my daughter's situation.(I am not complaining.) I think that the chronically ill patient has to attend to their illness full time, as though it were a brain tumor or a serious heart defect. I think treating the illness has to be put number one in the life of the patient, and any other position is taken at the patient's peril. I know this from experience. This disease can get much worse and then it can be life altering. A fellow at the CFS conference in Reno this spring told me this: "CFS is not the worst of the diseases but it is the cruelest". CFS robs the patient without the patient even knowing it. The patient can never quite grasp what is happening, and stands on the edge of a precipice but does not know it. The patient feels they are half well and getting better, while mostly they are in a stasis situation sitting on the edge of a sharp and deep precipice. The most unlikely thing will send them into the abyss. It is totally impossible for the patient to see this, and to see what is coming, or to see how serious this, is and to put it number one in life. The patient soldiers on, marching along to oblivion. I had a instinct with my daughter at the very beginning that this was something dangerous, but the half speed nature of it disallows the patient to believe it. This is one of the great cruelties of the disease - that it does not announce itself in a way that is believable and does not give sufficient warning, like a brain tumor does. But the consequences can be the same. This disease has the capacity to be life altering in all cases. Not all cases go this way, but there is no way to know how messed up your brain and immune system really are.
On more thing: don't expect anything from Obama and his bureaucrats - just like you wouldn't expect anything from Bush and his bureaucrats. You are on your own here. Don't expect much support from family and friends. They too have troubled processing this information. Even well-meaning folk cannot believe this disease. As far as they are concerned the patient is removed from the game of life. The CFS/ME patient is a non-player in the game of life. This is one of the harsh realities that the patient and the Patient Advocate have to deal with.
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I stumbled upon your blog by accident. I am a 30 year old CFS patient. Thank you for what you are doing for your daughter. I am adding your blog to my blog list. I hope that's ok!
ReplyDeleteI also found your blog recently. I am a 35 old year old female CFS patient, and I am my own patient advocate. I've been sick and unable to work for a year, and have done little more than take best guess supplements and rest. I've scoured the Internet and some of the books you've mentioned, but it's hard to know where to start a more serious recovery effort. Thank you for your informative posts, and for sharing your observations especially regarding the research conferences, which seem fascinating but which many of us are too sick to attend.
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