Hi Maygin,

It pretty much just sucks sometimes I admit. A couple of things have been instrumental in my dealing with the losses. I was fortunate to find a really great pain therapist who was a good fit for me and helped tremendously with the grief and trauma. She did EMDR and hypnosis which were good for me since I could talk all day not get anywhere. Psychology Today keeps a database of therapists, I just looked for people who did pain, chronic illness.

I too am a creative type, used to schlepping cameras to the most difficult to access place I can find and taking photos and also standing at an easel and painting for hours. Not going to be doing that anytime soon. Find another creative outlet, modify what you love into something do-able or take up something new. I got a bunch of mini panels that I can paint sitting on the floor.
You cannot neglect that part of yourself. You are still a symphony, not just this disease.

I try to take a really long view on recovery. I figure if it takes one, two or even five years then that is at least something to work towards. Ignore the feeling that you aren't getting anywhere. Minimizing loss is actually a gain as far as rehab. I thought I got nowhere and had bad atrophy for many months but I guess the exercises I refused to stop doing at least kept the muscles from shrinking even more. Eventually they woke up, still smaller and weaker but making some progress.

Something my son said to me also helped. He is 13 and I am used to being superMom. I was telling him one day how sorry I was that I couldn't be more for him, that I wasn't like I used to be. I started tearing up and as the first rolled down my cheek he looked at me like I have probably looked at him sometimes and said "stop crying Mom, What are going to do give up?" That shook me up and I got even more stubborn after that. I am not giving up or the kid's gonna think I'm a quitter. Can't have that. Cry when you need to but don't get bogged down in it. That is a place to visit not to live. Find someone to help you get past things, I am really glad I did and only wish I'd done it sooner!

Sending lots of Healing Love,
Littlepaw