We need to be able to walk into an MD's office, describe our symptoms and be given a test to see if this is what we have.
Think of how many lives would be spared. How many suicides prevented. How this disease would be able to be diagnosed at the mild or moderate level and spare those who aren't diagnosed early enough, who end up trying to push through symptoms, and consequently spend countless years suffering the effects of severe M.E.- left bedbound and ultimately abandoned.
I want to know why, when I walk into an MD's office, I get told there is no such thing as ME and that I must be suffering from some other "real" disease like cancer and then be subject to a series of tests. MD's inevitably get pissed off when tests come back normal as if I've somehow fooled them.
For God's sake why in the hell does the National Institutes of Health spend $16 million dollars on male patterned baldness and $3 million dollars on M.E. ?! Why don't people fight for us?
There continues to be such a stigma attached to this disease-it's gone on for decades! Why does this feel like having a modern day version of leprosy? Or why it feels akin to admitting to a committing a crime upon 'coming out' with the name of this disease?
Variation on a theme once I have to disclose I have a chronic illness (only after having to cancel several planned outings or explaining why I can't go to certain events due to the possibility of passing out):
Me: Um...I'm sorry I have to cancel again. I don't want you to think I'm a flake. I have a chronic illness that limits my activity.......
Them: "Oh-what's the name of your illness?"
Me: "Well....it has a benign name but it's really a serious and devastating disease. It involves the immune system, brain, endocrine system."
Them: "I'm sorry to hear of this-what's the name of it?"
Me: "It's called Myalgic Encephalomyelitis."
Them: "That sounds Horrible!"
And then inevitably I feel guilty and blurt out...."in this country its called "Chronic Fatigue Syndrome."
Them: silence............."oh"...said flatly (as if I've fooled them into thinking I have something serious). "I have a friend who has that. She's tired a lot too but when she exercises she feels better. Have you tried exercising?"
Me: Sigh. Here we go again...
As an aside why can't people respect issues associated with MCS. They are so attached to their chemical scents. My housemate refuses to stop using those stupid dryer sheets. The vent is below my bedroom. He does laundry CONSTANTLY (he has OCD).
I have an idea for a research study that I'm exploring. I have started a literature review and am surprised there is no existing study, at least not that I've discovered so far. I have a few advantages for conducting such a study. I'm familiar with the type of research involved with this sort of study. I have some training in grant writing-albeit a long time ago. For my dissertation I was one of the first to do a research study utilizing this particular method. I was one of several Ph.D. candidates featured in a book written by a professor on research methods. The content of my dissertation was original so I have experience doing original work and am familiar with what is involved. I happen to be affected by lyme, toxins, viruses, bacterial infections, have a poorly functioning immune system, and have the honor of also having a lot of neurological symptoms.
I was once at the severe level. I remember a few months after being diagnosed when just the act of talking felt like an effort. I would lay in bed watching tv. When my then partner would ask me a question or say something that required a response and feeling alarmed at the effort it took. I didn't want to let her know because I didn't want her to be frightened. But she already was. Terrified. We both were. But we didn't speak of It. We became caught in the maze of M.E. That horrible, awful maze that is M.E.--that destroys the lives of all that it touches.
There are times when I have severe neurological symptoms. Fortunately it has only been a day at most but I know that's what awaits me if I don't pay attention. When those neurological symptoms occur the one question that strikes fear in me is "what if I end up this way forever"? I remember similar questions would get uttered by friends with HIV when they would catch a cold-"what if this turns into pneumonsystis pneumonia?" What if that bout of forgetfulness is the beginning aids dementia?
Part of the reason I'm considering this again is because I've been re-experiencing some bad cognitive symptoms (word finding difficulty, difficulty with writing, etc...) similar to when I was first getting ill I'm also having a re-occurrence of anxiety-the out of the blue anxiety like I did at the beginning. I'm a little worried about it-worried that I pushed myself too long. And there is also an increase of OI symptoms which likely accounts for the increase in anxiety.
Anyway, this research project would be a huge undertaking so I'm carefully considering it.
Oh, in case anyone was wondering-I did put up two posts and then take them down. Stuff is going on with my housing. Could use some positive thoughts about it....
Mumford and Sons-Ghosts that we knew....