I'm new here & am looking forward to 'meeting' other people who understand what I'm talking about. I'm very fortunate because my daughter is a nurse so she understands & other people mean well but the platitudes can be irritating.
I'm sure we all switch on our bright & breezy faces when we're out but it's quite wearing when constantly told, "But you look so well."
About me, I'm 73 years old...eeeeek! I was first diagnosed with Scleroderma 20 years ago & I've been very lucky because it's progress has been slow. Now it's really taking hold & it's devastating.
I have, as I'm sure do most of you, a lot of pain. My hands are stiff & distorted & my feet are also completely hard. I have all the usual internal problems but I really think the thing that bothers me most of all is the total exhaustion & the foggy brain. I don't feel like me.
This bothers me way more than physical pain!
Enough about me, I'm looking forward to connecting with some of you so I don't feel so alone in this.
My photo is the last one I've had taken of me & it's at my daughter's wedding nearly 5 years ago.