Hi Brenda, it's truly understandable-your saddness. It's such a huge loss-to loose our health, ability to work full time, sports, if we were into that-I was dailey. And that takes time-like you said I should be grateful to be alive-we are grateful to be alive, but it takes time to accept our current state of health.
I've used a lot of things for distraction of the physical pain. I enjoy sports on tv, swimming, I did a huge amount of physical therapy and massage therapy to keep mobile. Mine started with frozen shoulder following surgery. absolutely no use of my left shoulder - arm. I got nearly all of it back because of early treatment, although I wasn't diagnosed for 4 years. When I had a nerve injury in left hand-misdiagnosed and late treatment. My fingers are frozen like a claw-but with treatment can now cut my food, type etc. I'm so grateful I left that Dr. that said I had Rheumatoid Arthritis and flew a couple of states away to sports injury well know group-1 minute diagnosis. Ordered a Tens Unit and have full mobility except left hand. Swimming helped me a lot. When my toes curled up off the ground, my Dr. had me do warm water swimming therapy, squeezing toes as swam. After 4 months, they touch the grounp. Be your own advocate- please stay with us a you will learn so much and hopefull save your mobility. Emotionally, mentally I am grateful for the support here.
Most of us have had horrible sensitivity-to clothes, sheets, wind-but I had desensitization had hand therapy, and did it myself at home. Took several plastic containers, put sand, coffee grounds, cotton balls, various textures of fabric, beans, popcorn, and run hands, feet thru the containers. Eventually I have no sensitivity to limbs.
You can go to RSDSA and put in your zip code and get the closest RSD support group with phone number of group leader. We have many professionals visit our group and give us a lot of insight.
I use distraction with Biofeedback, Visualization, Journaling, Writing to friends, Talking to friends, We have friends visit us here in Arizona from Oregon-Washington where we used to live. They understand our limitations, but so enjoy visiting and soaking in the sun after a winter of rain and snow.
The massage therapy is something I believe gave me mobility, except left hand. Physical therapy too. I wasn't able to tolerate accupuncture.
It's been 15 years-6 years of which has been full body and internal. I try to be positive and grateful-But it has taken time to feel this way. Used to be in a dark hole. I found a wonderful psychiatrist, seeing him 6 yearsnow, who also is my pain management Dr-very conserative, He is a neuro, pharamacologist, board certified and also an internist and now built two clinics with HOBT and other procedures. He left a long practice in NYC and am so grateful I know have those dark times. You WILL come to terms with this and find joy in your life-it maybe a different joy. I still miss tennis and water skiing, snow skiing, but I just bought a wonderful camera for my new hobby of photography. Going to take class. I've thought of taking up painting, but will keep with the photography for right now. I'm planning on 2-3 trips next summer and get out of this heat in Arizona.
Please know we are here for you.It does take time to adjust- I had also been in grief counseling when my parents died. That helped with this health issue too. 2 1/2 years.
There is so much comfort here and caring. Wonderful group-take care, one of your new friends, loretta