This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
Monday, December 31, 2012
Life with Chronic Pain: A How-to Guide, What can you learn?
Life with Chronic Pain: A How-to Guide
Choosing how you live with pain
I’ve had a bad week.
You would think that after all the years I’ve lived with sacroiliac joint pain
I would do a better job of managing my pain and inflammation. But there are
still many times when the pain-filled days outnumber the pleasant ones.
I don’t like to talk
about my pain, perhaps because I am tired of hearing my own complaints. Thirty
years of nursing probably adds to my dislike of complaints. I also have come to
realize that complaining does very little good for me or those around me. I try
to save the complaining for the big times when I just can’t hold it in any
longer and the tears, the bitchy spirit and inactivity are all forced upon me.
And then it all passes.
But for the sake of
getting to know each other, I will explain what it is like to suffer from my
particular malady. It is probably more accurate to describe it as the worst of
a long litany of problems that I endure. For me, the worst is the inflammation
of the sacroiliac (SI) joints, which are the longest joints in the body and
also the ones you sit upon.
It is difficult to put
it delicately, and I gave up a long time ago trying to sidestep the issue. I
have a pain in my backside. That upon which I sit hurts most of the time…
always after sitting on a hard surface such as a chair or a bench. The pain
extends down the back of my legs bilaterally and for me is distinctively
identified by the feeling that I have an elephant sitting on my lap. The
pressure on the pubic bone and the pelvis is severe. That’s pretty much it,
with the accompanying difficulties that all sitting brings in all social
situations such as dinner, travel or the movies.
I know from past
experience that this painful time will eventually pass. I will do my exercises,
rest, stop lifting my grandchildren, become more irate when the bag boy puts
three half-gallons of milk in one bag and generally try to be good to myself.
Then this strange phenomenon takes over, and I will have a gloriously wonderful
day. The Columbia River, where we live, will sparkle, I will once again enjoy
laughter, my husband will stop giving me that look as if my evil twin has been
visiting, and my life will once again be half full.
I know I don’t have
enough courage to live the way I must, and I often don’t know how I will do it.
But you see, when it comes to this disease, I have no choice. In other ways, I
have many choices. I can choose the best doctor I can find. I can choose not to
talk about my problems constantly. I can choose joy over sorrow. I choose to
see the climbing rose on my front porch, to savor the warmth of our Victorian
home and to laugh at both of our dogs, who are natural born clowns.
I didn’t choose this
disease, but I can choose how I live with it. What choices are you making?