The Set Up

Often, we are asked as CFS folks, was anything going on around the time of our becoming ill. I came down with a virus, but I think it started before that. As in my Mothers womb.

I am sure my Mom would not be happy if I announced my familys dirty laundry, but its something I find interesting. Right before I was conceived, my mother and father were almost at the point of divorce. My father was cheating on my mother. At the time, my brother and sister were kids. My father was living with my mother, brother and sister and would get jazzed up and ready to go out on dates with his mistress. My mom watched this, made his dinner for him, did his laundry, etc. She was from the old school and did not feel capable of leaving him. She enabled him and fell apart in the process. My mom was devastated. She lost so much weight and went down to 99 pounds and she was 5 foot 4 inches. She smoked, she cried herself to sleep and she crawled into bed with my sister for comfort. She was 39.

She finally gave my father an ultimatum. She threw his clothes and suitcase out on the lawn and screamed, Get out or come back, but none of this in between nonsense! Let me add that I have no idea if those were her exact words, but something to that affect. My words would have been tinged with fire and brimstone and the favorite word of choice, starting with an F.

My dad succumbed, came back and during the first romantic interlude they had once reunited, I was conceived. No one could believe my mother was pregnant with me. She was tiny, sickly and heartbroken. Not to mention, she never looked pregnant. I was like a bump.
After nine months of incubating in my mother, I came screaming out in less than 5 minutes. I wanted out. My mother literally had me on the way to the hospital. I wonder if it was because I was like, "hey man, it's toxic in this place..get me out of!" And, there I was with a full head of hair.

I was born with no fingernails, a heart murmur and I was immediately put in the premature ward. I was so tiny that my dad held me in the palm of his hand.
I dont think its by coincidence that I was an unwell child. I truly believe the trauma that my mother endured was passed onto me. Out of my siblings, I was the most ill growing up. I was extremely sensitive and I was allergic to so much including my own bacteria. I was hospitalized for a small urethra as a kid, asthmatic bronchitis, and a never-ending case of strep throat. I was always sick.

Finally, in 11th grade, I was onto the road of better health. Allergy shots were the key. Allergy shots and mastering my emotions. I learned to not take things so seriously in high school. But in the summer of 1987, right before my senior year, my dad was very ill. He had been, but there was no diagnosis. It was just a flu, a cold, a cough. My dad was never ill. We spent our summers in New Hampshire.

One night, my father was coughing and it was clear he was ill. He was rushed to a hospital in New England. We were told to go home, back to Pennsylvania. He needed to get to an Oncologist. My world was going to change.

Cancer. Mesothelioma. Asbestos poisoning. It was awful. My room was next to the bathroom where he would run to in the middle of the night. Barely making it to vomit. Chemo, radiation, you name it. There was no chance of living for him, but he believed he could beat it. I went to school tired, scared and full of grief.

I meant the great love of my life. My high school sweetheart and boyfriend for 7 years. Christmas of 1987 came and he came bearing gifts. He also came with a huge cold sore on his lip. It was really gross. My good looking boyfriend had this gross aberration, but it was Christmas and I was leaving the next day for a ski trip in Vermont. A kiss was in order.

3 days later, I was in Vermont feeling like I was going to die. I had a horrible cold and was in bed for most of the time that I was there. I had sores throughout my entire mouth. I remember it being a blur. I can't really remember it. I was so out of it, while my friends were off skiing.

And there it is. That is how it began. A see saw of ups and downs for a year until in 1989, a few months after my father passed, I was never the same again. I came down with the Epstein Barr virus. My college roommate and myself.
I believe that my illness was brought on by that virus. I believe that the virus flourished due to grief. I believe that my immune system was set up for the virus due to the environment in which I was conceived.

I believe that just as we now have to strengthen the terrain of our bodies to deal with detox, lyme, or viruses in order to overcome these things; we also have to have a good foundation right from the beginning. The beginning of life.
I believe that at least for me. I feel that my body was set up for this "thing" that is trying to take me over.

I also feel, that I can overtake it at some point as well...I hope. I feel that those past traumas that occurred are lurking and one day, I will have a rain dance for them. I will stomp them out. I will stomp them out and take my vitamins and protocol. Here's to a whichever way it comes.


very powerful story, holly! my jaw dropped to hear your words...isnt it amazing how many of us insticnctively KNOW our own story...even though its just NOW, at this point in the history of this disease, that doctors are catching up to our speed! Dr chia is zeroing in on the very aspects you talk about . The time period that some pwcs contracted the ORIGINAL virus and the subsequent hit to the immune system that ultimately became their down fall...the beginning of the end - is sometimes at our very beginning! (The seventh month of a womans pregnancy. THATs one of the things he looks at, i believe! why the 7th month i dont know.)

In my case, I knew the "facts" partly because my mother is still alive at 93 and also because my sisters are many years older than me and as teenagers the job of caring for me fell to them...a sick baby (the "sickest baby that ever managed to live" they called me) These facts were told to me in a very unemotional way...except that I always understood what a terrible chore it was to try to care for a baby/child who was so sick and so often! apparently there was nothing enjoyable about me at all (im not being dramatic or maudlin, its the truth! if youve ever cared for a sick baby you'll know what i mean...and when it goes on for YEARS - its pure hell!) very few happy milestones...not much chance of my joining in normal family events...i wasnt even allowed to play wth other kids as a small child - (no energy to move around, for one thing, so i became an artist). My father was a merchant marine before my birth. a real hell-raiser back then im told...and spent many years travelling all over asia and south america only to return from one trip with what was dxd as "malaria". i was conceived after that, as a last, late -ditch effort to provide a son (my mother was in her late thirties and wanted no more father insisted)

at my birth i developed pneumonia (stopped breathing and had to be resuscitated several times in my first months), chronic respiratory infections and couldnt digest anything (due to gastro probs)...except, finally, goats milk! my mother stayed in bed for nearly 5 months after delivering me (it was always said that although she "caimed" to be sick...she was just tired and resentful and didnt want to care for me (post partum? me/cfs?) My father returned to the sea (no son).

the job of caring for me fell to my older sisters and various relatives that were called in to our house to take turns. This was "life" and like you i was constantly sick (missed the entire first grade, chronic illness, gastro and respiratory/pneumonia) they say i lived on donnatal, phenobarbital and penicillin! a child! I grew up hearing "hypochondria" whispered in the background. I didnt know what that meant...but it represented something shameful to me...and i soon learned NOT to complain about anything. Children that are chronicaly ill - due to the shame and guilt - (like adults that are so) learn early on to become quite resilient and stoic! (PEM?)

I "recovered" at the end of my teens (i had chicken pox at 15...and at 17 became pregnant!) I struggled along refusing to even see a doctor (except for another pregnancy at 26) and got very ill with a respiratory and gastro "flu" in my 30's (most likely "food poisoning" possibly from eating raw shellfish).

My doctor says that "flu" (an enterovirus) was the virus that my "broken" immune system could not fight off and the start of the the final descent into true me/cfs. I figure out of 58 years ive been relatively "well" and functioning for about 15.

My father had life-long health probs- chronic ulcers (had much of his stomach removed), seizures, and periodic "malarial" flare-ups (horrible to watch) and died of cancer of the parotid gland, prostate and alzheimers.

My mother was anemic and frail and "sickly" (always 90 lbs.)...but any disease progression she might have had, was obscured by a traumatic brain injury in a car accident over 40 yrs ago...shes still alive but has also been taken taken care of completely (no work, no stress, no responsibilty of daily life, etc.) interesting, SHE contracted and survived as a baby (along with her father & grandmother) the "Influenza" during the 1918 epidemic (all others living on their ranch died of it) did this afford her certain immunities or start the ultimate destruction of HER I.S.? was her dna altered and consequently mine? Genetics are going to be found to play a MAJOR role in me/cfs im sure!

i often wonder if it was the combination of the emotional trauma (lowering resistance and immune function) AND a contagious viral onset surrounding my conception/birth that shaped my life....just as it appears to have shaped yours. I wasnt dxd with me/cfs until 1998 (after many years of being tracked by a neuro for possible MS) and i think it was "serendipity" that the very doctor i was sent to (i didnt seek him out, i was sent to him) turned out to be the very doctor i needed! (as his focus is Enteroviruses!)

sorry, i didnt mean to hog your blog!...but i wanted you to know that there are many of us just like you...with a possibility of contamination by the virus in utero! and that more docs are looking at this very intriquing scenario! (which means more hope for us!) jackie
I am very moved by both these stories, Spitfire and jackie. A lifetime of struggle. But what you said here, jackie, makes me wonder what else has been influential.

I often wonder if it was the combination of the emotional trauma (lowering resistance and immune function) AND a contagious viral onset surrounding my conception/birth that shaped my life....just as it appears to have shaped yours.
Both of you are strong, resilient, articulate, caring, life-embracing women. Isn't it amazing that you lived through all that you have and have come through it with your spirits intact? Of course you're feeling very bruised, but your hearts are still beautiful.

Thank you both for your honesty and your generosity in sharing your stories.
Jackie-wow! You too have been through it. I did have happy milestones followed my lots of illness. I also couldn't digest anything including formula. They had to order me something special. Not much has changed!

Thank you for writing that and thank you Gracenote too!
Spitfire, thanks for sharing the amazing challenges and trials through which you've triumphed in one way or another. One word comes to my mind, perseverence. You have it.

Jackie, remarkable similarities to Spitfire's life. Bless you both. I'm expecting great things from your indomitable spirits.

Hi Spitfire,

You and Jackie surely have had to deal with a lot—it seems obvious that you are both warrior spirits, which is probably essential in dealing such difficult circumstances. I can also to relate to having an unhappy immune system since birth (I also couldn’t digest much as a newborn, including formula), as well as a series of strep infections (treated with antibiotics of course), asthma/allergies, etc., although not nearly as extensive as you and Jackie.

I think that perhaps one thing we can be thankful for is that our immune systems were not pounded with those combination vaccines, which could potentially have added autism to our list of challenges.
I want to say that I have been through a lot, but I think many have. Many have gone through worse. Thank you for thinking I am a warrior. I could see myself in a warrior costume dancing around a campfire with a drum trying to get this CRAP to be gone. GO! SHOE..damn YOU CFS/ME. !!!!
Maybe youve got some sort of shaman thing going on as well:) Perhaps such symbolic gestures/rituals (or even visualizations) to banish illness and affirm health can help mobilize our inner psyche resources for healingand can be uplifting and entertaining, if nothing else. Therefore, I also say shoo cfs/me begone
I didn't have near the dramatic stories occur in my situation as both Spitfire and Jackie did. But you bring up a really good point SF. I was a sickly child. The runt of the family. I wonder how much of our current health problems were actually starting to form years before we really got sick? Were we predisposed by genetics? Or environment? It does give one pause for thought. Thanks for sharing!

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