chronic fatigue.

[mopinko]

22 yrs after west nile set off a trudge through doc after doc, a new doc finally said the words-
u fit the criteria for chronic fatigue. next visit it was- u fit the criteria for ibs. common combo.

it is grinding my gears that it took this long. it’s long been known that it can b kicked off by a viral infection. all the docs, a doz of them, accepted that it was related to that infection. but nobody said the words.
i cant even wrap my mind around what a difference it wd have made to know.
to not b told over and over that i was just depressed. and that i wasnt ‘that’ sick. i had a dx of fibro, which is ‘only’ a syndrome. not a real ‘disease’.
i never said i was a sick person. i’d say my health was ‘sketchy’. i accepted that i was depressed, but i was just exhausted. i tried all the meds. they never helped.

i’m trying to figure out what to do w this info. w/o a doubt, i wd still have my family. maybe i wd still have a career as an artist, which i abandoned out of exhaustion. and lack of support from my hubs and my kids. they wd have stepped up if we had known.
i’m trying to forgive myself for all the things i blamed myself for. to shake off the conviction that i’m a huge failure. but i dont think i’ll ever get over the losses.

the west nile wasnt the 1st virus to fuck me up. i was never rly right. i had 3 viruses before i was 2.
when i was in college the 1st time, i had hepatitis. shortly afterward, my life spiraled. i got pregnant, got married, dropped out, got divorced. i floundered for 6 more yrs, til i met my 2nd hubs. we had a few good yrs. i went to art school school a couple yrs later, then dropped out when our 1st was born. had another baby, then i had a miscarriage that started w a cold or flu. i got pg right away after. it was 9 mos of shear exhaustion. it was twins, but i only got 1 baby.
i didnt get back to school for 15yrs. i didnt finish my bfa, but i got a certificate in design. it took 2 1/2 yrs of weekend and night classes. by the time i finished, my marriage was failing. again, i went into therapy. unsurprisingly, it didnt help.

i am trying to take some solace in what i did manage to accomplish. i raised 5 kids. they’re good ppl, but they dont speak to me. maybe that will change at some point.
i helped to start a non-profit to support hard hatted women that thrives to this day, over 30 yrs later.
i made a lot of amazing art. art that was groundbreaking. appreciated by my peers. but that i couldnt sell.
i worked hard for a women owned member art gallery for several yrs, and raised a LOT of money for them. i made lifelong friends.
i did many, many remodeling projects, turning my 2flat into a million dollar sf home.
i raised a doz great dogs.
i worked my ass off to get obama elected, and was recognized by the campaign for it.
i started an urban farm, and beat city hall over it.
and now i’m learning to sing, to make music.

i’m trying hard to forgive myself for all the failures. i doubt my kids ever will, tho.
but i have no idea what to do w the anger. or the grief for what could have/should have been.

mostly just venting.

[OldBaldy1701E]

1. I have to say that the list you give makes it difficult to believe you have any kind of fatigue!

Seriously, I think there is something to be said about many of our social 'norms' which were considered absolutes in the past, but are now being seen as more propaganda than fact. Our medical profession being seen as omnipotent is one of them. We sometimes place too much faith in their efforts when the reality is that they are human beings and can be vindictive, lazy, and/or borderline incompetent. Hell, as someone who suffers from manic depression and anxiety, I remember when the general consensus among people who were considered knowledgeable professionals was that such things were 'excuses', and someone like me was either 'good for nuthin' or 'maliciously lazy'. My own mother, who spent 48 years as an emergency room nurse, still thinks I am making it up. (I suspect that this is more because of her fears over being ostracized by her clique than a denial of facts. Also, it is not that she denies the existence of such mental issues, she just refuses to accept that I have any of them.) Let's face it, we have made great strides in healthcare, but in many areas we are still just casting around in the dark.

As a complete and utter failure, let me assure you that, although you may have made some mistakes, you have also made some greatness as well. That is far better than most of us have done.

[mopinko]

2. it's a lot but

so much didnt happen. didnt get that sheepskin, let alone the md i was raised to think was waiting for me. that, or whatever great thing i was gonna b. high expectations can b a curse, i guess.
i’m grateful i at least got to take a swing at my dreams. maybe if i’d known i was sick, i wouldnt have bothered.

and it’s true that the science wasnt there when i was younger. but the fact is that these docs thought chronic fatigue was bullshit. and they thought that cuz mostly women get it.
then they label me a hypochondriac.