cross posting from mental health support-
chronic fatigue.
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. its 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. id say my health was sketchy. i accepted that i was depressed, but i was just exhausted. i tried all the meds. they never helped.
im 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.
im trying to forgive myself for all the things i blamed myself for. to shake off the conviction that im a huge failure. but i dont think ill 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. theyre 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 im learning to sing, to make music.
im 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.
1WorldHope
(910 posts)It took several years to get my strength back. My sister has struggled with fibromyalgia for years. She seems to have wrangled it into a place she can control a bit better. She found that getting enough sleep was huge, to the point of sleeping meds. Caffeine really messes with her and she must get exercise to keep herself going. She is 74. You have accomplished so much and I hope you do forgive yourself for not being a God. Kids are generally selfish and sometimes growing up helps. But if it doesn't help them, then what can you do? Everyone has a childhood to get over. But you take care of you! I wish you well and I hope you find compassion for yourself, you didn't cause your burdens, you survived them. 🤟🏼
mopinko
(71,869 posts)cbd:cbn:thc. it was cheap, but w my card i can get it half price, no tax.
i have an order for a sleep study, but its a pita for me. its along time for my dogs to b alone, and i have no 1 to help that.
im def better if i get a decent 8.
1WorldHope
(910 posts)whathehell
(29,815 posts)you've accomplished a whole LOT, and did so against the odds! I believe I'm around your age and you've accomplished a lot more than I have.
I too have to confront my many failures every day, and I know it's not easy! That said, I can only repeat what my shrink tells me, and that's to go easy on yourself..It may sound lame, but the truth is, life is hard -- harder I think, than most of us realized when we were young. Please take care of yourself.
madaboutharry
(41,371 posts)You told the story of a woman who never gave up.
slightlv
(4,378 posts)You've accomplished a LOT... especially doing it while you've been fighting chronic fatigue! I've got fibromyalgia, and believe me, you've outdone me by a country mile! BTW... by rheumatologist told me, after I was diagnosed... Fibro won't kill you, it'll only make you wish it would. Considering the fatigue factor I fight, I understand...!
XanaDUer2
(14,120 posts)I, too, am looking back at my "bad" decisions. But we try to make the best we can. Sounds like you've lived a full life!
Maraya1969
(23,013 posts)or that and how we are a failure because we haven't. My question is, 'Who makes these rules?"
I've had a lot of illness in my life and I used to feel bad about not accomplishing what I thought I should, especially since I had a lot of talents in younger years so I Expected to be very accomplished.
Then I remembering reading about certain native tribes around the world and how once they had their food gathered for the day and their chores done they had to do to survive they would sit in circles and tell stories. And they were very happy. I'm sure partly because they did not have a voice running around their head saying, "You should be doing this" or "You are a failure" "Everyone else has accomplished more than me"
SHIT LIKE THAT!
But now I have come to realize that happiness does not come from the outside. If it did the "Love of my life" ("S) (through the years) that I thought would bring me happiness would not have eventually turned into a misery manufacturer. What did bring me happiness was changing "Happiness" to "Peace with my world" was getting rid of all those self defeating thoughts and learning how to live in the moment.
I am not perfect at this, and I don't have to be. But I do not torture myself anymore like I used to. I still do it but not at all like I used to.
Be kind and gentle with yourself. You are so worth it and not because of what you have done but because......You Are.
mopinko
(71,869 posts)when i can, i work hard. when i cant, ive always kicked myself. now i can curse my body. getting better tho. pushin 70, and yeah, asking myself- what do i expect.
just getting over a bout of diverticulitis. i got sick so slowly. took a couple mos to see a doc. all the while saying to myself- but u were just doing well. what happened?
made me realize that when i start lagging, its usually physical, and i shd take better care of myself.