When you live with pain for 24 years, your dreams become dim, your life is a little darker, and there is so much uncertainly in your life. Please don’t judge me too quickly, all of these things are not what I would have chosen for my life, however, it is my life and I must work with what I have been given.
I have a wonderful primary care provider who cares and is compassionate and works so hard to give me that sense of normalcy in my life. We work together to maintain the pain at a level that I don’t want to sit and cry all day because the pain is so intense. Then it happens, that uncontrollable electrical storm that invades every nerve in my body, the dreaded breakthrough pain. The pain once again shows its desire to take control of my life. So I spend hours, days or weeks doing whatever I can to ease it back down to tolerable levels. I use the heating pad, no good, so next I try ice, and still the pain refuses to ease. It is a never-ending struggle to keep the pain pushed back in that dark recess of my brain that I call the “pain cave.”
I have only one life to live and I am living in pain, 24/7, 365 days a year. I was not given a choice in this decision, my body betrayed me and boy did it do a good job of it. I have pain in my arms, legs, hands, feet, back, neck and shoulders. I live with a very progressive form of degenerative joint disease, Sjogrens syndrome, osteoarthritis, rheumatoid arthritis, sciatica, neuropathy and arachnoiditis.
We grieve for the loss of the life that we once had and the life that we once dreamed we would have. Grieving is an important part of the process, but grieving alone is hard. Many of the friends I once had are long gone. Not because either of us really chose to end the friendship, but because the pain came between us; the pain ended our friendships. They go to work, concerts and dinners and I cannot do those things because of the pain. They have a life to live and it is a life without pain. So the invites to go out with them become less and less until one day the invites stopped and the friendship dried up like a desert without rain.
My family tries to understand the pain I endure, but do they really get it? No, they will never get it because they do not have pain and I hope they never do. Pain cannot be seen, felt or heard, it is so hard to grasp how the pain can rule one’s life, and how it affects every aspect of your life.
My life is a life of pain; it will be a journey that I will be on throughout the rest of my life. It is up to me to decide how my life will be lived. Do I stop living because of the pain? No. Do I hide away from life because of the pain? No! I choose to live each day as it comes; I choose to fight this demon called, “chronic pain.” I may not win every battle, but I will fight to live my life the way I want to live it, the pain does not own me.
How do you choose to live your life?