I "accepted" I was ill with something labeled "CFS" back in 1995 after sudden onset in 1993. I did not accept limitations on my functioning, so I finished medical school and residency, having had a near remission in 1997. Then I ran out of steam around 2009, and have only been able to work sporadically since then.
I have tried many medications and approaches over the last 20 some years. Some medications made a big difference for a while. I do not know what caused my near remission in 1997 (rest, changing silicone implants for saline, yoga, Tibetan medicine, supplements, who knows?) Haven't been able to replicate it. Now, however, nothing seems to make much difference.
Things have gotten worse after the 20 year illness mark, pushing me to finally and aggressively seek possible answers: looking into Lyme, and now, seeing Dr. Kaufman at OMI and for the first time having the immune function tests that everyone's been talking about all these years. (I do have low NK cells! It's nice to fit in!
) And I am really hoping that OMI will be able to provide some treatment that makes a real difference.
Anyway, I fear that if I cannot find a way to improve at this point, I may lose the ability to work altogether. I am my husband's and my only real source of income, so that is a terrifying prospect.
Feeling useless, with little hope for improvement, reliant on pain medication that social forces are pushing to make inaccessible, constantly in a irritable state that is bad for my relationship with my husband, yes, these naturally lead me to wonder if the world would be better off without me, and I would be better off without myself. I want to be able to focus on acceptance, meditation, and practice what I believe spiritually: kindness, generosity, etc. but all of these take energy that I haven't got.
So, I just keep "existing" as someone said, and try to keep up with the hoops one must keep jumping to maintain a viable medical license.
End of vent. Thanks for listening.