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Please, I need some kind supportive words from those who understand.

I am in the 9th year of bedridden with whatever acronym they want to label this as. It totally fits the ME/CFS/SEID list of symptoms, but what the hey, my doctors refuse to accept this as a REAL disease. Rather, then continue to heap psychological labels all over me, which is pushing me farther, deeper down Alice's Rabbit hole and I want help to dig out.

If anyone knows of a caregiver especially in Hawai'i and more especially, on the Big Island, I would appreciate the referrals more than you can imagine. Please. I was not sick when I moved here. I became ill so fast and lost mobility and am stuck out here in the middle of the ocean with unbelieving caregivers.

Here is a link to my blog (if this is unallowed, just inform me and I will delete it).


just search for "fatiguefibro.blogspot.com"
Thank you ♥​

Comments

I was recently diagnosed and still relatively functional and after going to a battery of "specialists" at one of the nation's best hospitals, I am being treated by my local primary care doctor who said yesterday, yes, this IS REAL. I feel for you and my heart goes out to you. Sending you hugs. The Big Island is my favorite place in the whole world, BTW.
 
I really feel for you. It's like you are just one lone flute in a sea of blaring trumpets all telling you to get up and get over it. It is very hard to feel upbeat or positive when every way you turn you see just another hard face. Its cruel and abusive to slap someone with that pschogenic label then punish them for it. I know what that feels like. I Hope you find someone to help. I can only pass on my deep sympathy and say that people here at least, know what you are going through and believe it's real. Because it is.
 

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KonaRose
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