Even though many of us are not working, this illness truly is a full-time job. I'm not sure what grade I would get because my brain's only working half the time and the rest of it is just glossing message boards/research abstracts/new products and wishful osmosis. But I start as soon as I wake up, and usually end my day signing off lymenet. Sometimes I think we deserve some kind of recognition for all the work that we've done... we research,we get together and discuss, we headbutt, tear apart the science & analyze experiences, find the greatest common denominator, and we march forward with the solution, and most of us have being doing it as long as it takes to become a manager at a Fortune 500. If you read from the beginning to the end of many of our treatment threads, it may sound and look an awful lot like Boiler Room, except our lives and bottom line, not just the latter, depend on how well we do our jobs.
We not only don't get rewarded in any way for our efforts, we pay K's to give ourselves a puncher's chance while we and our families are the only ones striking out. But we don't want medals. We'd just melt them to pay for a few extra pills. We really just want our lives back.
For the first few years I was sick, I had dreams of returning to my former life in all its youthful exuberance, insobriety, and endorphin overload, yet now my wildest imagination consists of a day when I can move all my medical equipment to norcal with me so I can work or go to school and come back home to cleanse my body of the toxic burden of leading a normal life. I used to tell myself I'd be back outdoors, trail running or even meandering aimlessly through forests to breathe and be, but now I can't imagine being on a grassy knoll without wearing long-sleeve pants and shirts. Even while I was nearly bedridden on high-dose antibiotics, I never OK'ed being told what to do by my illness. 4 years of working up to taking a walk every other day for 30 minutes does a number on your perspective of what's possible for an ex-hyphy.
I was taking an epsom salt/EDTA bath last night, reading the summary of research presentations at the IACFS/ME conference (reference in previous blog post), and the surreality was hard to swallow. Even with all the hope that the Whittemore-Peterson Institute is supposed to offer, I don't believe they'll come up with a cure. The only reason why they're gaining so much traction now is because big pharm is seeing the green in CFIDS. They'll study drugs that modulate this and that aspect of immunity, calm down the cytokines, lower inflammation and let us live our lives, but we'd probably have to stay on them forever. Not to say anything of the consequences of playing god with our immune systems. Even if it worked, that approach still doesn't make sense to me when other countries are successfully using un-patentable methods like ozone, UVB radiation, and photons that work adjunctively with the immune system, instead of "modulating" anything, to eradicate all types of infections.
Yet there I was, obediently perusing and highlighting the research findings. I don't know why I give western medicine the benefit of the doubt. With all the hype about the IACFS/ME conference, the only section on alternative medicine research was about magnesium, carnitine, and qicong. I nearly puked. I hang out a shingle and pray that biotech companies will use their billions to research the applications of a potent remedy readily available in nature just because they might actually cure something instead of, say, turn cancer into a chronic illness, but when they're still stuck on magnesium 25 yrs after the Incline Village outbreak of cfs, I couldn't be more naive unless I watched Fox News for news and not entertainment.
Surreal. This is what my life has come to. A brewing, brooding cynic instead of a happily drunk one. Displaced and disappointed by Western medicine, I spent a few months of my family's income on one small piece of medical equipment and refuse to replace tshirts and shorts ridden with holes (true story--I must have moths in my closet right next to the skeletons.) So desperate to get well I'll read an entire publication that recommends CBT if the footnote sheds light on a new virus. I've been sick for so long that when I visualize being well again, I can't enjoy the image for long before
she menstrates all over my daydream with "what measures must I then take to stay that way?" As a matter of fact, I'd probably wait a few months to announce my recovery out of fear, either of relapse or illusion. 25 years old and I can hardly remember what youth feels like.
We not only don't get rewarded in any way for our efforts, we pay K's to give ourselves a puncher's chance while we and our families are the only ones striking out. But we don't want medals. We'd just melt them to pay for a few extra pills. We really just want our lives back.
For the first few years I was sick, I had dreams of returning to my former life in all its youthful exuberance, insobriety, and endorphin overload, yet now my wildest imagination consists of a day when I can move all my medical equipment to norcal with me so I can work or go to school and come back home to cleanse my body of the toxic burden of leading a normal life. I used to tell myself I'd be back outdoors, trail running or even meandering aimlessly through forests to breathe and be, but now I can't imagine being on a grassy knoll without wearing long-sleeve pants and shirts. Even while I was nearly bedridden on high-dose antibiotics, I never OK'ed being told what to do by my illness. 4 years of working up to taking a walk every other day for 30 minutes does a number on your perspective of what's possible for an ex-hyphy.
I was taking an epsom salt/EDTA bath last night, reading the summary of research presentations at the IACFS/ME conference (reference in previous blog post), and the surreality was hard to swallow. Even with all the hope that the Whittemore-Peterson Institute is supposed to offer, I don't believe they'll come up with a cure. The only reason why they're gaining so much traction now is because big pharm is seeing the green in CFIDS. They'll study drugs that modulate this and that aspect of immunity, calm down the cytokines, lower inflammation and let us live our lives, but we'd probably have to stay on them forever. Not to say anything of the consequences of playing god with our immune systems. Even if it worked, that approach still doesn't make sense to me when other countries are successfully using un-patentable methods like ozone, UVB radiation, and photons that work adjunctively with the immune system, instead of "modulating" anything, to eradicate all types of infections.
Yet there I was, obediently perusing and highlighting the research findings. I don't know why I give western medicine the benefit of the doubt. With all the hype about the IACFS/ME conference, the only section on alternative medicine research was about magnesium, carnitine, and qicong. I nearly puked. I hang out a shingle and pray that biotech companies will use their billions to research the applications of a potent remedy readily available in nature just because they might actually cure something instead of, say, turn cancer into a chronic illness, but when they're still stuck on magnesium 25 yrs after the Incline Village outbreak of cfs, I couldn't be more naive unless I watched Fox News for news and not entertainment.
Surreal. This is what my life has come to. A brewing, brooding cynic instead of a happily drunk one. Displaced and disappointed by Western medicine, I spent a few months of my family's income on one small piece of medical equipment and refuse to replace tshirts and shorts ridden with holes (true story--I must have moths in my closet right next to the skeletons.) So desperate to get well I'll read an entire publication that recommends CBT if the footnote sheds light on a new virus. I've been sick for so long that when I visualize being well again, I can't enjoy the image for long before she menstrates all over my daydream with "what measures must I then take to stay that way?" As a matter of fact, I'd probably wait a few months to announce my recovery out of fear, either of relapse or illusion. 25 years old and I can hardly remember what youth feels like.