I have a ton of empathy for you and completely get it.
I seriously thought i was a hypochondriac. my dr told me hypo don't come to the dr and say they are a hypochondriac, but i felt like a car that i just drove off the lot (i started have symptoms at 20) and first like the windshield wiper would break... and so on.
i eventually got not one but several dx. I think when you get a diagnosis you feel validated. when you don't have one you feel like a whiner.
being ill ... has humbled me in a way i never imagined. I went from being a high achiever, type A personality, a mom that put every ounce into parenting, a dental hygienist
now i can not work, i am not dependable, my kids are 19-18- and 16 I miss some of their sporting events more than some. I can not keep up my home the way it should be kept up (for my lungs) because it is about energy conservation. I would say when i am in a flare i may have a sporadic 15-30 decent minutes in a day. well I want to use that time making memories not cleaning.
I wish i could hire someone. but my husband is a police officer and is in the national guard, he busts his but for us, i am on disability and that covers our extra medical costs ie: meds, co pays and er visits etc. and groceries.
Something that helps me is everyday i write in a journal and i find 5 things that day that made me forget about me for a minute. not me like oh i am great but i have so many problems it consumes me. I decided i was no longer going to let it have control. so i write down 5 things every night that brought me some joy . and on bad days i read through it.
What is your Dx thus far? Does it get easier? I don't know how to answer that ... I will say I revisit at times how easy it was to be healthy and i mourn my health. but it does get easier. well for me it has. I have accepted it, I have educated myself on anything that i can do to make it more pleasant for me and my family, and yes at times i fall short, but i try. Overall i try to be thankful for the challenge.
You are going to be ok. Trust in the Lord with all your heart; lean not on your own understanding. Proverbs 3:5-6
"get busy living or get busy dying" some movie i believe gran tarino
I am going to try for round two of sleep as my eyes are dry and burning and i am sleepy. I will pray for your Dr.s to be able to provide testing that will give them the tools to give you a better diagnosis.
if you don't mind what kind of tests have you had and what symptoms? and a list of your meds. I am not a dr. but i am good at knowing what to request. I have had the basic classes to know just enough to make my mind crazy with wonder. lol