I had posted in my journal about trying to cope and got this response from a member sometime ago:
' I understand pain. I wake up everyday with it. I embrace it rather than fight it. It reminds me that I am still alive. And by being alive, I get to enjoy my wife every day, my coffee and paper in the morning, the hugs from our grandkids, the days I get to snowshoe or hike. I have small daily goals that I set and I have long term goals (a cruise). It's an attitude, a way of thinking.....maybe unlike anything you've ever had to go thru. Your physical being is being changed by sd. So change your mental being also. Do not let negative thoughts be your friend. Work at it and someday you might find that you're doing it naturally. '
Then he says not to be negative.
Well the TRUTH is I CANNOT go on a cruise, or go for a walk or go for a swim, have a pet, drink a cup of coffee etc.
My feet back and legs give me too much pain to walk.
I can't ski hike fish camp or enjoy ANY of my past activities because its too painful.
I have NEVER been able to drink coffee, Caffeine gives me headaches and the acid in coffee makes my gut burn.
Swimming in a pool is a no no as the chlorine burns my skin and makes my eyes infected.
Swimming in the river is impossible because its too cold and when it warms in July/August warnings are out NOT to swim because of bacteria etc. I've been told over and over stay out of the river if you have immune problems.
Eating any food that is processed makes my fingers stiff and swollen and causes GI problems plus gives me headaches. Going out to eat is in my past. I can't eat anything with gluten or soy. Simple sugars are a problem.
Some days I can't take care of all my daily needs so I can no longer have a pet.
I used to like to drive now it kills my lower back (even with lumbar support) and aggravates the pain in my legs and feet.
My eyes are so sensitive I can't go outside without a hat and sunglasses.
I have to wear gloves or mittens if the temp goes below 72 degrees.
I have lost my sensitivity to touch so no sex.
I live with chronic pain and fatigue.
I've lost most of my friends.
I can't work.
My family doesn't understand and the one person who did, my sister, died from sclero complications over 4 years ago.
The medical community has been less than helpful. I have gone down every route possible on my own to improve my symptoms.
I welcome my death I'm so tired of being tortured.
I'm going to try the big pharma drugs as a last resort.