So this is my first ever blog entry. Rather than hash out my entire medical history, which I've hinted to in the forums, I will begin in medias ras, in the confusing, tumultuous, improbable here and now. But a little catch-up first.
My whole course with this disease has been improbable. Just getting so ill, at the young age of 18 as I did, was improbable. Then there was the initial progression of my disease which didn't entirely fit into the symptom set of ME/CFS (about 75% symptom overlap) or any other disease I've researched. Then of course all of the negative tests results from the doctors.
But then I got better from, of all things, grapefruit seed extract. But if I took too much it caused other symptoms. Then I had a dramatic and bizarre reaction to probiotics. Then I became exposed to mold and deteriorated dramatically. Then I developed a new sensitivity to dairy. Then I had a horrible reaction to Diflucan.
Now, slowly, I am stabilizing, but still rocked by ongoing food and environmental reactions (hairspray and cologne make me very sick). But as I heal and stabilize, these sensitivities lessen. I know I will not get fully better, however; just to a moderate phase of constant brain fog but improved physical energy and stability. I was in this phase for several years and I would give anything to return to it.
My logical mind boggles at the improbability of it all. How can one physical condition cause so many symptoms, in such a bizarre and ever-shifting presentation? How can nothing show up on so many different medical tests? And how can no treatment, conventional or alternative, help? Mental illness runs heavy in my family, so Ockham's razor would suggest that this is simply a psychogenic illness. But having experienced a bout of depression prior to becoming ill, I know the difference. Three of my close family members have committed suicide, but I refuse to perpetuate that legacy. Though rebuffed by the slings and arrows of outrageous fortune, I cannot bring myself to give up entirely. I know that somehow there must be a saner path through (and hopefully one day, out of) this storm of illness.
So here I am, still not quite stable, unsure of what the next step is. I have a handful of alternative treatments left to try, and an ME/CFS specialist yet to see, but I know the chances of success, especially with my unusual symptom history, are slim.
A fellow sufferer once compared her condition to a wild animal. This is an apt description; I too struggle to tame my own invisible, obnoxious, unrelenting beast of a disease, while still trying to have some kind of a life and enjoy what I can.
Somehow, I am still making it through. And I will take that for today.
Till next time,
Tom
My whole course with this disease has been improbable. Just getting so ill, at the young age of 18 as I did, was improbable. Then there was the initial progression of my disease which didn't entirely fit into the symptom set of ME/CFS (about 75% symptom overlap) or any other disease I've researched. Then of course all of the negative tests results from the doctors.
But then I got better from, of all things, grapefruit seed extract. But if I took too much it caused other symptoms. Then I had a dramatic and bizarre reaction to probiotics. Then I became exposed to mold and deteriorated dramatically. Then I developed a new sensitivity to dairy. Then I had a horrible reaction to Diflucan.
Now, slowly, I am stabilizing, but still rocked by ongoing food and environmental reactions (hairspray and cologne make me very sick). But as I heal and stabilize, these sensitivities lessen. I know I will not get fully better, however; just to a moderate phase of constant brain fog but improved physical energy and stability. I was in this phase for several years and I would give anything to return to it.
My logical mind boggles at the improbability of it all. How can one physical condition cause so many symptoms, in such a bizarre and ever-shifting presentation? How can nothing show up on so many different medical tests? And how can no treatment, conventional or alternative, help? Mental illness runs heavy in my family, so Ockham's razor would suggest that this is simply a psychogenic illness. But having experienced a bout of depression prior to becoming ill, I know the difference. Three of my close family members have committed suicide, but I refuse to perpetuate that legacy. Though rebuffed by the slings and arrows of outrageous fortune, I cannot bring myself to give up entirely. I know that somehow there must be a saner path through (and hopefully one day, out of) this storm of illness.
So here I am, still not quite stable, unsure of what the next step is. I have a handful of alternative treatments left to try, and an ME/CFS specialist yet to see, but I know the chances of success, especially with my unusual symptom history, are slim.
A fellow sufferer once compared her condition to a wild animal. This is an apt description; I too struggle to tame my own invisible, obnoxious, unrelenting beast of a disease, while still trying to have some kind of a life and enjoy what I can.
Somehow, I am still making it through. And I will take that for today.
Till next time,
Tom
