Sami, so sorry, just seeing this now. It is criminal. I see my husband and KNOW, this is NOT a light matter and from writing people on facebook, I see people have them at different levels. It appears you and my husband really have it. If one can work, do activities, etc., it is not the ME, I have read of or see with my eyes, He has that (always foget the first part) sounds like diastolic intollerance--cant stand for long periods, flu systems for days, ibs, pains, it is a nightmare, and I think u understand. I have a different problem, which is of no help and we are stuck in the desert and relying on God. I pray for miracles. I thank u for writing, If u are like my husband he barely uses the computer and we cant even get disability. Sorry for venting, when u have your troubles, I wish you the best. We may have literature on it, big deal, I want them to do something. Put ads out, no one knows how bad this is. I guess no one except suicides have died from it, so we wont fund it but give it away. So wrong, so sad.
please don't apologize for venting. speaking for myself, i'd go nuts if i couldn't let off some steam and talk about
my worries and frustration with M.E. in a safe place.
it's so hard for anyone with M.E. to get a diagnosis that most MDs will acknowledge as real. i was very fortunate to find a dr in my home province who was able to give me a diagnosis, but that was 15 years ago (after i had been sick nearly 15 years already) and in all that time i have yet to find an MD locally who will accept it as real. however, i have managed to coax/nag my present MD into treating symptoms, and i think that's what it often comes down to for us. one thing to remember is that, apart from the grace of god, there's no cure, only treatments which can make some symptoms not quite as bad.
there are varying levels of disability with M.E., and a person can go through many of those levels over time. i spent years unable to so much as raise my head from my pillow. now, many years later, i can manage the basics of self care, occasionally get on the computer, and sometimes, if i'm very careful, have someone take me to do a little bit of shopping (this always wipes me out for a couple of weeks, but it's so wonderful to get out that it's a price i'm willing to pay). i tell you this in the hope that it will encourage you and your husband. the bottom line when it comes to M.E. is that 99% of treatment is something we must do ourselves. the most important thing is to rest. cooperate with the body's demands. and if you can find a dr willing to treat even some of the symptoms, that can improve things for him somewhat.
i could share many tips, which i will gladly do if you wish. as someone whose family basically abandoned me when it was discovered i wasn't going to get well any time soon, i have had to learn many lessons the hard way and figure out how to survive on my own with this devastating illness. i very often over-extend myself, so must be very careful to use what little energy i have as wisely as possible. it's a lot like making a dollar do the work of ten dollars, which is tricky when the brainfog sets in and i can't think clearly at all, but here i am, still kicking and grumbling
IMO the literature only helps us to understand what we're dealing with. i've looked at it as a tool for self-education. it also helps me spot quacks and to know better than to follow the insanely out of date suggestions of my dr. ("get more exercise and you'll be fine" ... good heavens! what century did he go to med school!?) it can also help us recognize a good or at least competent dr when we see one.
i'm guessing that you live in the southwestern US? (you mention being in the desert). i know quite a few people who live in that region, and many have found drs who will treat "CFS" in the same way M.E. should be treated. a very dear friend tells me she puts up with the CFS diagnosis because it gets her what she needs. i think one of the reasons some of the better drs know the difference between CFS and ME but call it CFS is that it's recognized more and has gained some small degree of legitimacy (very small, but every tiny step forward is a blessing!)
yes, many people do despair and take their own lives, but there are other causes, usually secondary. i have lost 5 dear friends to complications and 3 to suicide. this weighs heavily on my heart and makes me very angry. unfortunately, the medical community and the insurance people tend to use suicides as an excuse to carry on calling it a mental illness, with suicide as "proof" that it's just a "rare form of depression".
have you ever come across Co-Cure? they're an advocacy organization with a website created and maintained by people with ME and similar conditions. they can be very helpful, despite still referring to ME as "CFS/ME". as well as other useful information and a discussion board, they have what they call a "good doctor list". i found mine (the one who gave me a diagnosis) there; perhaps you can find one in your area. i don't know if you have insurance, or how much of it you have, but some of these drs are so dedicated that they're willing to waive fees or at least work out a payment plan that people can manage. i think one of the biggest tragedies with this disease is that by the time most people realize that they're in really bad shape, they've practically hit rock bottom. thankfully, there's still mercy and kindness in the world, and often we come across it when we need it most. i pray this will be the case for your husband (and, of course, for you, who must carry this heavy burden while suffering in your own right). i'm fairly well acquainted with some of the people who operate this website and know them to be good, caring people who want only to help others in the same boat.
please forgive my rambling, i'm having a really foggy day, but i didn't want to put off a reply because you've really touched my heart. i'm sure i'm not the only person praying for you. praying you're able to find a good dr who will be able to get the ball rolling not only in helping your husband at least feel a bit better, but in getting the disability pension to which he is so clearly entitled.
in case you haven't been to the co-cure site and would like to see what kind of resources and information they have there, the URL is:
prayers and best wishes
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Post Edited By Moderator (Pink Grandma) : 12/2/2010 12:47:31 PM (GMT-7)