Fibro...Looking normal...blessing or curse?

I can understand the sentiments of those who feel that because they don't look sick and they look "normal" are often not believed that they are hurting and suffering...consider yourself lucky that you do look normal. It is not any more comforting to look disfigured and be in pain.

Having conditions that have altered my appearance, I would gladly love to look like my old self again. I don't look like a monster, but scleroderma has caused facial changes and atrophy "dents" in my limbs. Lesions from lupus have left their scars and arthritis has made my hands look gnarly.

I consider myself lucky that I'm not worse off. There are many people who suffer much worse than me, and I know I'm blessed to be as well as I'm doing.

Sorry for my rant...this morning I was noticing how much thinner my lips have become and the radial furrow around them are so much more pronounced...I'm literally losing face :)

Can't believe I'm still so vain

Hugs, Robin

My "normal" these days is a stunned, scrunched-up-in-agony facial expression including gritting my teeth with lips open that probably makes me look constipated. And I'm normally not. Constipated that is. Debatable about the "stunned" though. Also walking with a cane at turtle pace and tending to hobble doesn't help. Even so, I still get the odd person who will say to me, "BUT you LOOK so GOOD!!" - like that's helpful when it's so not true???? Geez Luieeeze!

blessings and peace

since I have a daughter and a sister-in-law both with MS, and a first cousin with MS, all who use canes, have problems walking, etc.... I feel very blessed to "look" somewhat normal. I know they hate the feeling that "everyone" is looking at them with "that" look. Most of the time, I can escape that look, except when I am walking like a 90 year old all bent over ( I'm only 51)

Very good point, Robin. But I agree, you're not vain! We're only human, and we want to look as good as we can.

Before my back surgery, I was one to complain when people said how normal I looked. Not so much now. Walking at the pace of a turtle, stiff as a board, with my reacher used as a cane, I know I look as bad as I feel.

Here's a funny story. Last week I went to Target and got on one of their electric carts. The "power" button was red, but unlike the ones at the grocery, there weren't bars to show how much juice was left. I was at the farthest corner of the store when I realized the button was blinking and I'd better get back. I passed a couple of those customer service phones, but figured I would be ok.

It went slower and slower, until I felt like I was in a really silly movie. It would have been hard to even walk that slowly. A couple of times I had to laugh out loud, which I'm sure made me look even more ludicrous! Then there were no more phones. I kept thinking I'd come across a red-shirted employee, who would laugh with me, and bring me a new one. But no, just people walking fast, all very serious.

I'll bet it took me at least 10 minutes to get from one end of the store to the other! I could have walked part of the way, but I would have had to put some of my purchases back on shelves, since I couldn't carry them. So I really was stuck. It finally gave out about 10 yards from the check-out lane, and I managed to move my stuff that far. When I told the cashier what happened, she just gave me that "there there, dear, poor pathetic old lady" look I so love to receive. But at least she carried my bag out for me.

Spookiesmom, you gave me a great idea. Why it never occurred to me to get a handicapped parking tag, I don't know. Thanks!

Debbie

Robin,

A boring day - now there's a concept! I can't even imagine what that would be like anymore. There's always a curve ball coming from somewhere!!

Debbie