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?
Marina,
Thank you for leaving your comment. I have discovered over the years that living with pain is a process that is ongoing. Even when we can get to the point of accepting that our lives have been altered, it is still a daily struggle to live our lives each day as we would like too.
I can share from my own experience that there came a point in my life that I was able to stop struggling with what I had lost and was able to start thinking about how to move forward. Once I got there it really became easier to deal with the fact that I lost so much physical function in my life.
I was able to realize that even though I had lost the ability to walk, run, dance like I once could, that it did not mean I lost who I was inside, the inner me. I am still the same person I was before the pain and so are you.
You may have lost physical function but you are still the same person you were before the pain. You still have the same hopes and dreams. Please don’t let the pain take those things from you, don’t let it win.
I am so happy to hear that you are finding others like me to talk too and receive support from. Having support is an important part of allowing us to move forward. Always hold on to the knowledge that you are never alone on this journey.
I would encourage you to check out the discussion forums here at The Pain Community. You can start new discussions or jump in on one of the topics already started. There are also live hosted chats here on the website in the chat room, Monday, Wednesday and Fridays. The chats are at 11:00 a.m. ET, 10:00 a.m. CT, 9:00 a.m. MT, and 8:00 a.m. PT
Thank you, Teresa. I’m new to this site and will definitely check out the forums and the chats. Thanks as well for the reassurance. I will not let the pain win and fully intend to forge ahead… The landscape of my life-world may be altered, but I am finding new ways to traverse the pathways ahead, painful though they may be.
Teresa,
Thank you for this eloquent statement about how the pain conditions you suffer from have altered your life. (And your understanding or expectations of life.)
I felt my life came to a screeching halt a few years ago when I became ill and the pain pursued me relentlessly throughout every day. I am finally beginning to realize that the pain is a constant companion — it’s not fair, and people don’t “get it,” but I keep going,– not of course at my previous levels of functioning, I am not even a fraction of the person I was pre-illness– but I’m glad I have, because I’m beginning to find others, mainly online, who are also suffering from chronic pain, and I realized how much I want to reach out to others, and how much it helps reading or hearing about their/your stories.
Anyway, for now that’s what’s keeping me going. Knowing that I’m not alone…