Posted 10/19/2015 8:34 PM (GMT -6)
I am new here and came looking for support and connection with others who suffer with chronic fatigue. I have been diagnosed with peripheral autonomic neuropathy (with there was a neurological section here), basically malnutrition (although I eat my body doesn't do much with it starting in my stomach and all the way through), and chronic fatigue syndrome (or as they are now calling it - systemic exertion intolerance disease). I am grateful to have a great group of people helping me medically including a neurologist, nutritionist, psychiatrist, and therapist and yet, in my every day life, I feel so alone. I don't have boils all over my face, I'm not in a wheelchair, I can walk and talk for at least part of the day, in other words, I look normal and I am constantly being faced with judgments and criticism. If you can't see it, it must not be real.
I've done a little reading here and can relate so well to those who are grieving the loss of who they once were. I used to wake up with the birds full of energy, ideas, places to go, people to see. Now I wake up feeling like I haven't slept for years (which I haven't) and hope I can manage to get at least "something" done. I am pursuing alternatives with the nutritionist my focus at this point. I'm also working really hard at acceptance that this is now my life and I will find a way to make it worth living and yet just talking to myself gets old and there are days where I am just so full of doubt about my abilities to cope with all of this.
It's not that I don't have friends and two great sons who try and understand as best they can, but I lack the understanding one gets from being able to share and support others who "just know" what this feels like and how absolutely life changing it is. I hope that this might be a place I where I can just be me without all the judgments that I look fine, so I must be fine.