You are viewing a single comment's thread from:
RE: My Doodle for The Doodledayeo challenge - round 12
I have Ehlers danlos syndrome which for me is pain and fatigue. With dysautonomia and orthostatic intolerance, bone degeneration, joint instability dislocation, adrenal insufficiency, dural ecstasia, csf leaks, spinal stenosis, spine degeneration...
It is hard.
I feel guilty about not being available to my family and not working. It is extremely isolating for all of us.
Rollercoaster for sure.
I looked it up and I couldn't finish it. It's upsetting and I can't even begin to express how sorry I am that you have it. You shouldn't feel guilty. You didn't choose your situation, you didn't want it. It's a horrible, horrible situation and you need all your strength to be focused on getting through each day. The people who love you won't want you to feel guilty. It's wrong to expect you to be available when you can't. You have to take each time and situation according to what is within your capacity. And though feeling guilty can't be controlled or avoided at times, know that the people who love you will understand or try to understand. You're amazing. I have an even bigger appreciation for your art now <3
" I can't even begin to imagine how you felt or are feeling. " I'm reading your recent post, I think you have more insight than anyone I know into how it feels. My diagnosis is comorbid and still being worked out. Reading about your condition resonates so much with me. Any kind of activity impedes my swallowing?, throat? neck?, tmj? c spine?? Neck, face, shoulders,thorox! But no one gets it and no-one can offer help.
You get it. I know you do.
Ah, how highly you think of me :) .. Perhaps, to a degree, I know what you're feeling. But I've always felt that no one can truly know the exact extent of another's suffering. We can empathize with each other but I do know whenever we fall into despair, no one can feel how deeply we are in. I get what you're saying. Though I admit that sometimes, as selfish and as narrow-minded as it is, I feel that unless that someone is in my body, he/she will never truly know. Ah! I'm probably not making any sense.