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Stories of Hope: Getting Off the Merry-Go-Round By Barbara Schaffer

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I often talk about “Getting Off of the Merry-Go-Round”. By this I mean: to stop constantly looking for the “cure”; to stop expecting that each new treatment or medicine will be “the answer”. I believe that no matter what treatments they come up with, I will still be disabled. I will still have CRPS. Maybe some of the pain can be mediated but I don’t count on it. I feel that this belief has allowed me to spend my energy living.

It used to be said that CRPS burned itself out in 10 years. This isn’t true! But I know many people who found that after many years with CRPS, they were able to do more. A few years after I stopped searching for the “cure” and refused all invasive treatments and most medications, I found that I could do more. I could spend more time with other people. I could tolerate eating out, listening to music, shopping or going most any place more often even though my pain wasn’t any better. It is important to know that I use a very custom power wheelchair all of the time at home and out. I asked Dr. Robert J. Schwartzman (CRPS specialist who serves on the RSDSA’s advisory board) why this was happening and this is what he explained—Pain is the signal your body sends to your brain that screams, “SOMETHING IS WRONG!” You body responds by changing blood pressure, causing your heart to beat faster, and many other physiological responses. After many years of pain, the body recognizes this CRPS pain as normal, not as a signal for help, so your body doesn’t create all of the other responses thus lessening the total impact of the pain and allowing more energy to be used in daily activity.

This makes sense but I wonder how this important adjustment can happen if we are constantly subjected to new treatments, new medications, new ways to disturb the neurological and chemical balance that our body needs. The human body is a marvel! It is always moving toward homeostasis, always trying to restore balance and health. We, as bodies and minds, are capable of adjusting to so many health problems and disabilities. After a period of time, almost anything seems normal. It is strange to me that the moving air isn’t painful to my husband because my body and my mind doesn’t remember what a breeze should feel like. This pain is normal for me and unless I think about it, I just pull a shawl around me or move to another spot in the room where the breeze doesn’t hit me.

You may ask, “How can a you accept the fact that you may live in pain for the rest of your life?” I’ll ask you, and I’m speaking to those who have had CRPS for many years, “How have you lived with it until now?” Actually, have you ever lived with CRPS or have you spent these years fighting, trying to expel it from your body? Take a minute and think about your answer, then I will tell you how I have learned to live with CRPS.

CRPS is a part of my body. No matter what medical treatments I have tried, and I have tried most of them, I got worse. The only treatment that has ever helped has been psychological counseling, which included: biofeedback; relaxation; self-hypnosis and someone to talk to who understood and challenged me to develop strategies to deal with the havoc CRPS caused in my life. I have lost the ability to do many of the things that I loved and I have mourned their loss but the same way that we learn to live after mourning the loss of a loved one, I found new things to do and new ways to do others. Now I fill my life with new activities, new friends and new ways to enjoy life. This is a constant challenge because CRPS is always changing but isn’t change one of the constants of life? I try to remember that life has made me no promises and that each day is a gift and I get to choose whether I suffer or enjoy it.

I cannot walk, have extremely limited use of my right hand, limited use of my left hand, it hurts when I breath, air movement can cause severe pain, I cannot be hugged or touched very much-but I am active. I use a power wheelchair adjusted to fit my body. I have a backpack on the wheelchair filled with things that I might need. I always bring a shawl and water to drink. I think and plan for everything that we do and it has reached the point that I know exactly what I need. When I’m out, I might need to lean back and close my eyes to relax but all of my friends and family understand that I need to do this in order to be with them. CRPS is a part of every minute of my life but I don’t talk about it much because I know that most people cannot understand what I feel the same as I cannot imagine that moving air doesn’t hurt them. I try to remember that my family and friends also have needs and I can be there for them as well as they can be here for me. The disabilities and limitations that CRPS causes can be a constant challenge. The pain fills your mind and leaves room for nothing else, but by pushing yourself to do something, almost anything, you will find that other thoughts, other activities can replace the pain. If you cannot walk in the mall, use a wheelchair when you want to shop with your teenage daughter. If you want to go out to eat with your husband, take a rest in the afternoon. No, you cannot do everything and you have to think about how you can do the things that are important to you but you can live a good life. Life is made up of minutes. All you have to think about is making this minute the best that it can be so concentrate on what you are doing, not on the pain.

Journal entry: April 29, 2001

I feel confused when it comes to understanding my feelings about how I want others to respond to me and my pain. I want others to be aware of what I am feeling. Notice, I say aware because there is no way that they could understand how I feel. How can anyone understand that just being in a group of people can cause my pain to sky rocket. Just being within the group, not even trying to communicate can be excruciating. How can I explain that my body cannot stand: to have air move across it; to be covered ; or be hot or cold? Can anyone understand that because I have lived with this pain for almost 14 years, the pain doesn’t show. I no longer wince when someone touches me. I no longer moan or have spontaneous facial expression that say, “PAIN!”; and now I find that I cannot even cry when I am in severe pain. Sometimes my face gives me away because part of it turns red and may get swollen but without this symptom, no one knows that agony I am in.
Why am I confused?

I don’t want to be definde by my pain and/or disability, yet it effects every moment of my life, every aspect of my personality, and my part of all relationships.

I don’t want others to assume that I cannot do things even though almost all activities either do or have the potential to increase my pain.

I want people to know that touching hurts me but I want them to reach out and touch my arm, give me a kiss, and be physically close to me.

When I’m in severe pain, I want people to know and express concern but this is such a consistent occurrence that I fear that others will experience “concern fatigue” and not be able to be there when something unusual happens and I need to lean on another.

It’s apparent that I am confused about how I would like others to relate to the part of me that has CRPS. I’m sure that if I discussed this with family, friends and acquaintances, they would express some of the same confusion as I feel. How can I address these concerns? How can others deal with this confusion?

To me, life is a precious gift that is define by my relationship with others and community so it is easy to understand the above feelings. Most of my friends have been made since I have had CRPS and I am very involved in community groups as well as CRPS groups.

When CRPS became a part of my life, I spent a few years deeply immersed in running an CRPS support group,which took most of my limited energy. Then I moved away from the CRPS community and directed my energy to my growing extended family and religious community. All of my interactions were with people who had no idea about what was wrong with me and I didn’t want to discuss it. I wanted space from this disease. I tried to pretend that it didn’t affect my relationships with others, but I realize that no matter how much I try, CRPS limits and defines many, no all of my relationships. I cannot get into most people’s/ homes. I cannot go on outings with friends because they don’t know how to tie down the wheelchair and I can’t get into many of the shops that they like to visit. If I am to be included, everything has to be planned and even then, there are always situations that weren’t expected. I’m very good at arranging outings and get-togethers but one of the ways that a person knows that a friendship is mutual is when others invite you to join them and that is very difficult.

OK, how do I deal with life and mostly friendships? I throw myself into them. I go to as many events as I can. I volunteer to help with the things that I can and I immerse myself in things that bring me and/or others that I love joy. I make sure that I am there for others when they need a shoulder to lean on and reach out to people that I meet as if each one of them has a special gift to offer and they do! This has always been my philosophy but it has become stronger because of all of the things CRPS has taught me.

Yes, I have expectations also. I expect those who know me to understand that at times I become quiet as I try deep meditation to stop an attack of spiraling pain. I expect others to accept that I may even fall asleep for a few moments during a dinner or meeting and not be offended by this. I don’t often talk about my condition but I’ve been trying to share more about it because I don’t want others to assume that I can or can’t do certain things. I am trying hard to find a balance between never discussing it and discussing it too often and that is a terribly hard balance to find.

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