Okay, so I'm using this to get my thoughts down on paper, more or less.
I'll try to go chronologically, but there might be some overlap back and forth.
Family History
I believe I'm unusual in that two others in my immediate family also have been diagnosed with ME/CFS. When I was an older child/teen living on Long Island with my family, my mom got caught in the outbreak of 'yuppie flu' of the late '80s/early '90s. It was also the time of the AIDS epidemic, so she often comments on how she was tested over and over and over again for HIV. Sometimes they'd test her for hepatitis, too, because it was clear she had liver issues and borderline liver failure.
My mom's issues were primarily digestive. She is much improved fatigue-wise, but she still has one of the most comprehensive cases of multiple food intolerance I've ever seen - no wheat, no dairy, unable to process more than a gram or two of fat at a time. She was diagnosed as having 'Epstein-Barr Syndrome' and my oldest sister's case of teen mono was blamed.
When my oldest sister hit her late 20s and early 30s, she had endometriosis. She had profound muscle aches and increasing fatigue as well as restless leg syndrome (another ridiculously and unjustly named spate of awfulness). Her doctor diagnosed her with Epstein-Barr Syndrome. Although she had reproductive and nervous system involvement, her worst symptoms were muscular, not digestive. She is also improved from her previous level of illness.
And when I hit my late twenties / early thirties...
My symptoms are predominantly neuromuscular and endocrine. And yet it's clear to me that we all have the same problem, viewed through a subtly different genetic lens. What's wrong with my mom and my sister is also what's wrong with me.
Symptomology:
When I first started teaching, I was living with my parents still. My mom would help wake me in the morning for work, but sometimes I wouldn't remember her trying to wake me, even though I would respond. I couldn't sit up in the morning without help. Eventually, my mother would walk into the room with coffee, pull me into a seated position, wrap my fingers around the mug and watch until I started to swallow it. Believe it or not, I didn't think anything was wrong with that. I just thought teaching was a really rough job and I wasn't used to it, yet.
As the years went on I began to notice that I had more and more trouble keeping up. I'd fall asleep the moment I got home from work. When I realized I couldn't keep that up and still do the job, I stuck to normal hours during the week. The weekend became my time to sleep, and I slept through nearly the whole thing, dropping into bed at 11pm and waking up at 3pm the next day, puttering around, feeling drugged and out of it during my waking hours, like I could barely string a thought together. Monday would come and I would paste myself back together with caffeine and force of will.
Then I injured my back and every symptom suddenly got ten times worse.
I began to notice I was forgetting things, words, usually. My students would gamely try to guess which word I was thinking of. I was so dizzy I caught myself on the edge of the whiteboard when I turned to and from it to face the kids, and I felt on-edge all the time, the way you feel when you've had way too much stimulants to pull a few all-nighters in a row. I crouched beside student desks all the time, but now I had trouble pulling myself back up to a standing position.
I had gone to school for herbal medicine at the Maryland University for Integrative Health, primarily because of my mother's health and how few doctors had believed there was anything wrong with her. I modulated my hormones with Black Cohosh and my stiff muscles with Anemone pulsatilla, but I was beginning to get an inkling that something had gone pretty terribly awry, and I didn't want treatments to obscure what was happening to me, so I held off probably longer than I should have, trying anything more profound.
I went to a local teaching hospital for help. Having no idea they'd spend more than three minutes with me, I blurted every symptom I'd ever had in a panicked rush. I'm not sure I would have believed me. Regardless, I got the "well... you sure don't look sick" from an actual medical professional (they really say it!), who sent me down for an ACTH-stim test 'just in case'.
The ACTH stim test remains one of the creepiest medical experiences I've ever had. My body temperature and heart rate dropped, my orthostasis grew untenable (the room was spinning while I lay perfectly still) and I grew confused, getting events out of order when describing what had happened, and leaving certain things out entirely. While hooked up to the oxygen monitor there, my oxygen saturation dropped to 78%. Luckily, this was all reversed by drinking lots of water and waiting patiently in a bed at the ER for my systems to come back online. Since my body made cortisol in response to the ACTH, the test's results were 'normal'... even though the test sent me to the emergency room. How's that for logic, eh? On the car ride home, I noticed eczematous bumps at the bend of one arm, like I'd actually been allergic to the ACTH.
Meanwhile, my symptoms entered what I'm going to call the 'acute' phase. I still wasn't taking anything to help myself. I'd begun to have seizure-like premenstrual episodes, where my entire body would tingle while my larger muscles twitched and spasmed. These were accompanied by a fever, uptick in heart rate and pulse pressure, chills and racing thoughts. It was like someone had just injected me with a full ampule of adrenaline for no apparent reason, and the first two or three times, my logic centers just kept trying to connect the symptoms with an emotional picture. Somewhat luckily for me, the pieces never quite matched up - really, nothing bad was happening apart from the symptoms themselves - and eventually I could ride out the symptoms without feeling like I had to pause and wonder if it were being caused by some kind of stress-connected upset. (The third time it happened the evening before my period was also a bit of a key-in.)
Next I traveled to the nearby Cleveland Clinic, where they assured me something was off, endocrine-wise, only they had no idea what that might be. I had undetectable levels of ACTH, but my cortisol was slightly high at the time (I was certainly feeling stressed!). They gave me the ACTH stim test again, but wrapped me in blankets like a burrito, elevated my feet, and gave me water to drink throughout. At the first hospital, they'd left me to wander around, and here they had someone watching me in case things went south. These things mitigated the reaction to the degree that I didn't get confused, just cold and shaky and dizzy.
Cleveland Clinic was the first hospital where I felt listened to, but unfortunately, what the physician there had to say was grim:
"There's so much we don't understand - you have no idea how little we know. There are hundreds of hormones we haven't even discovered, yet, and what we do know about, we scarcely understand. Never give up trying to find out what's going on," she added, "but you have to recognize right now that there's a good chance you'll never figure this out."
This, as it turned out, was rather prophetic.
Shortly thereafter, I was at a bookstore signing up for one of their frequent-buyer programs and the lady at the counter said something to me, something I realized I hadn't been focused on well enough to understand. I 'rewound' the tape in my head and realized what she had been saying were letters of the alphabet.
Then I realized she was spelling my name back to me. This took long enough that I barely managed to 'cover' before confirming that the lady did, in fact, have my name. The evening before that, I had stared at a squiggle for a second, thinking, what's that thing? It looks like a road before realizing that of course it was the letter 's'. The same thing happened when the lady at the bookstore handed me something to sign: I was looking at the first letter to my last name, but again - just for a split second - I didn't recognize it at all.
That's when I knew I could not go back to work in the fall.
I'll try to go chronologically, but there might be some overlap back and forth.
Family History
I believe I'm unusual in that two others in my immediate family also have been diagnosed with ME/CFS. When I was an older child/teen living on Long Island with my family, my mom got caught in the outbreak of 'yuppie flu' of the late '80s/early '90s. It was also the time of the AIDS epidemic, so she often comments on how she was tested over and over and over again for HIV. Sometimes they'd test her for hepatitis, too, because it was clear she had liver issues and borderline liver failure.
My mom's issues were primarily digestive. She is much improved fatigue-wise, but she still has one of the most comprehensive cases of multiple food intolerance I've ever seen - no wheat, no dairy, unable to process more than a gram or two of fat at a time. She was diagnosed as having 'Epstein-Barr Syndrome' and my oldest sister's case of teen mono was blamed.
When my oldest sister hit her late 20s and early 30s, she had endometriosis. She had profound muscle aches and increasing fatigue as well as restless leg syndrome (another ridiculously and unjustly named spate of awfulness). Her doctor diagnosed her with Epstein-Barr Syndrome. Although she had reproductive and nervous system involvement, her worst symptoms were muscular, not digestive. She is also improved from her previous level of illness.
And when I hit my late twenties / early thirties...
My symptoms are predominantly neuromuscular and endocrine. And yet it's clear to me that we all have the same problem, viewed through a subtly different genetic lens. What's wrong with my mom and my sister is also what's wrong with me.
Symptomology:
When I first started teaching, I was living with my parents still. My mom would help wake me in the morning for work, but sometimes I wouldn't remember her trying to wake me, even though I would respond. I couldn't sit up in the morning without help. Eventually, my mother would walk into the room with coffee, pull me into a seated position, wrap my fingers around the mug and watch until I started to swallow it. Believe it or not, I didn't think anything was wrong with that. I just thought teaching was a really rough job and I wasn't used to it, yet.
As the years went on I began to notice that I had more and more trouble keeping up. I'd fall asleep the moment I got home from work. When I realized I couldn't keep that up and still do the job, I stuck to normal hours during the week. The weekend became my time to sleep, and I slept through nearly the whole thing, dropping into bed at 11pm and waking up at 3pm the next day, puttering around, feeling drugged and out of it during my waking hours, like I could barely string a thought together. Monday would come and I would paste myself back together with caffeine and force of will.
Then I injured my back and every symptom suddenly got ten times worse.
I began to notice I was forgetting things, words, usually. My students would gamely try to guess which word I was thinking of. I was so dizzy I caught myself on the edge of the whiteboard when I turned to and from it to face the kids, and I felt on-edge all the time, the way you feel when you've had way too much stimulants to pull a few all-nighters in a row. I crouched beside student desks all the time, but now I had trouble pulling myself back up to a standing position.
I had gone to school for herbal medicine at the Maryland University for Integrative Health, primarily because of my mother's health and how few doctors had believed there was anything wrong with her. I modulated my hormones with Black Cohosh and my stiff muscles with Anemone pulsatilla, but I was beginning to get an inkling that something had gone pretty terribly awry, and I didn't want treatments to obscure what was happening to me, so I held off probably longer than I should have, trying anything more profound.
I went to a local teaching hospital for help. Having no idea they'd spend more than three minutes with me, I blurted every symptom I'd ever had in a panicked rush. I'm not sure I would have believed me. Regardless, I got the "well... you sure don't look sick" from an actual medical professional (they really say it!), who sent me down for an ACTH-stim test 'just in case'.
The ACTH stim test remains one of the creepiest medical experiences I've ever had. My body temperature and heart rate dropped, my orthostasis grew untenable (the room was spinning while I lay perfectly still) and I grew confused, getting events out of order when describing what had happened, and leaving certain things out entirely. While hooked up to the oxygen monitor there, my oxygen saturation dropped to 78%. Luckily, this was all reversed by drinking lots of water and waiting patiently in a bed at the ER for my systems to come back online. Since my body made cortisol in response to the ACTH, the test's results were 'normal'... even though the test sent me to the emergency room. How's that for logic, eh? On the car ride home, I noticed eczematous bumps at the bend of one arm, like I'd actually been allergic to the ACTH.
Meanwhile, my symptoms entered what I'm going to call the 'acute' phase. I still wasn't taking anything to help myself. I'd begun to have seizure-like premenstrual episodes, where my entire body would tingle while my larger muscles twitched and spasmed. These were accompanied by a fever, uptick in heart rate and pulse pressure, chills and racing thoughts. It was like someone had just injected me with a full ampule of adrenaline for no apparent reason, and the first two or three times, my logic centers just kept trying to connect the symptoms with an emotional picture. Somewhat luckily for me, the pieces never quite matched up - really, nothing bad was happening apart from the symptoms themselves - and eventually I could ride out the symptoms without feeling like I had to pause and wonder if it were being caused by some kind of stress-connected upset. (The third time it happened the evening before my period was also a bit of a key-in.)
Next I traveled to the nearby Cleveland Clinic, where they assured me something was off, endocrine-wise, only they had no idea what that might be. I had undetectable levels of ACTH, but my cortisol was slightly high at the time (I was certainly feeling stressed!). They gave me the ACTH stim test again, but wrapped me in blankets like a burrito, elevated my feet, and gave me water to drink throughout. At the first hospital, they'd left me to wander around, and here they had someone watching me in case things went south. These things mitigated the reaction to the degree that I didn't get confused, just cold and shaky and dizzy.
Cleveland Clinic was the first hospital where I felt listened to, but unfortunately, what the physician there had to say was grim:
"There's so much we don't understand - you have no idea how little we know. There are hundreds of hormones we haven't even discovered, yet, and what we do know about, we scarcely understand. Never give up trying to find out what's going on," she added, "but you have to recognize right now that there's a good chance you'll never figure this out."
This, as it turned out, was rather prophetic.
Shortly thereafter, I was at a bookstore signing up for one of their frequent-buyer programs and the lady at the counter said something to me, something I realized I hadn't been focused on well enough to understand. I 'rewound' the tape in my head and realized what she had been saying were letters of the alphabet.
Then I realized she was spelling my name back to me. This took long enough that I barely managed to 'cover' before confirming that the lady did, in fact, have my name. The evening before that, I had stared at a squiggle for a second, thinking, what's that thing? It looks like a road before realizing that of course it was the letter 's'. The same thing happened when the lady at the bookstore handed me something to sign: I was looking at the first letter to my last name, but again - just for a split second - I didn't recognize it at all.
That's when I knew I could not go back to work in the fall.
