Living with chronic pain presents me with some unique challenges and I have to try to find a unique outlook on life or go crazy with the futility of it all. For those who do not suffer with chronic pain they probably have other, valid issues but I hope they don’t feel as debilitated. How do those of us with chronic pain cope with the days spent in bed? Thats one challenge. What do chronic pain sufferers do with our mind when the brain fog lifts? That’s another challenge. What do we think about when our bodies leave us housebound, or bed bound but our minds are still active? Challenge! I have a friend who is challenged not only with chronic pain but she has no choice but to work for a living. Regardless of how much pain she is in she has to go to work or she won’t eat. She has no family to support her and can’t seem to get onto disability. So she goes to work and comes home to her bed. I feel guilty seeing her work in such pain the way she does. Her pain makes me feel guilty! Very guilty, especially the days when I am laying around in a brain fog while she’s at work. What do I do with my mind that day? I spend a lot of time thinking. And wondering. Why? Why do I have this? Do I deserve this? Is this karma? Can I make some new karma? I feel so guilty! Should I get a job like hers? I feel guilty that I’m not doing like her or trying harder so then I think maybe if I’m really good today I will make some new karma. On and on my thoughts jump from guilty thought to guilty thought.
I sometimes wonder if my guilt is only about fibromyalgia? Perhaps my guilt is a deeply dug in pattern that started in my mind before fibro? I can recall feeling guilty as a kid. When my parents fought it was my fault somehow. If we were short of money I “knew” that me needing those new shoes was the cause of the family’s money problems. When someone would be upset with me I just knew it was my fault regardless of how cruel they acted. If I didn’t get A’s on my report card I felt guilty. If my clothes weren’t as nice as the other kids I felt guilty. I felt guilty because we lived in a boarding house my parents ran and we did not have the white picket fence. So yes, my guilt is long term.
As an adult I have learned about perfectionism. I am a perfectionist. That doesn’t mean I do everything perfect, it just means that if anything isn’t “perfect” in MY mind then I’m guilty and feel very anxious. And of course I set standards for myself that I would never impose on anyone else so my perfectionism leaves me feeling guilty and depleted no matter the circumstances. Nobody could reach the standards I set for myself. I demand 100% from my life 24/7 but I never reach that. Who could?
Now, as an adult, I also feel guilty because I have fibromyalgia. I wonder guiltily if maybe I have this because I ate too much sugar when I was younger. Maybe I shouldn’t have done LSD in the 60’s. Maybe it’s because I don’t exercise enough. Maybe it’s because I eat popcorn at the movies. Is that popcorn made from GMO corn? Guilt! Maybe it’s because I don’t go to the doctor enough. Maybe it’s because I had that surgery when I was 17. Like that was my fault? I had no say in it being underage but no matter. Maybe it was the surgery when I was 12? Maybe I’m too anxious? Maybe I ‘m depressed and maybe I should be taking some anti anxiety medicine. Personally I am against drugs that mask symptoms. Maybe I’m guilty for not taking them? Maybe I should take those pills. Rawk Rawk Rawk Rak Rawk. My monkey mind can go on and on and on beating me up over and over day after day.
I could go on but this feels tedious when I read it back to myself. My point is, this guilt is a well worn groove in my mind. This guilt groove started when I was around 4 which was the first sexual abuse. (By the way. Has anyone noticed how many fibromyalgia sufferers are women and how many of them were sexually abused as children)? Over the years this guilt groove has become an automaticity. I no longer have to have the specific thought that, “I’m guilty”. I just get an ugly feeling, a clutching in my stomach, a darkness in my mind. No thoughts SEEM to be there, I just feel really down and want sleep to get rid of that feeling.
Recently I read a book that helped me with this. The author is Stephen Wolinsky and the book is called TRANCES PEOPLE LIVE. He talks about how we continually think about something in our life, such as my thoughts about guilt, then we build our story around it and it becomes part of our mental landscape to such an extent that our story becomes like a trance. We walk around believing what we tell ourself in our story and it’s usually not true if you ask any good friend, but we obey that belief like it’s true. I walk around in the trance that I am guilty. No matter what I do, no matter who tells me I’m doing that well or that I did a good job on this I believe that I am guilty. But the good news is, that trance can be broken. Once we know we are in the trance, we can undo the trance.
So, with my guilt, I began to watch so I could notice when I got this “bad” feeling so I could pause, step back, take a look at it, and “see” the bad feeling. I would “see” the feeling could be verbalized as “guilt”. I could “see” that I felt guilt because I hadn’t done the dishes, or made my bed because today is a tired day. My guilt would progress to feeling degraded and then I would want to isolate from everyone believing they think I’m guilty too. When I searched my mind at the time of this generalized anxiety I was amazed at the thoughts I harbor. There were reams of thoughts behind the generalized feeling of “ugh”.
Once I saw these thoughts I began a practice that I had learned from a course I once took. Just say NO! I remember a time I recently practiced this. I was in the kitchen leaning over the sink and this generalized feeling of ‘ugh” swept over me, so I paused. I looked out the window. I examined my thoughts. They went something like this, “I don’t have a job, I’m a loser, I don’t do anything right, nobody likes me, I have fibro because I’m a loser plus, I think I’m ugly.” So I said to those thoughts, NO!
I pushed them away. I did not try to figure out why I had those thoughts. I did not try to figure out when they started or what happened when I was a kid that they started. No need for more thinking or more monkey mind. I practiced saying NO! to my monkey mind over the next few days and lo and behold a change occurred. I found that for minutes at a time I would feel in awe of the beautiful tree outside my window or I would feel proud of my painting or I would feel good about exercising my dogs or I would be proud of the fact that I do yoga every day and eat vegetarian and take really good care of myself even though the dishes aren’t done today. I marveled at these moments of just plain old feeling peace, calmness and a bit of joy.
What is causing this calm feeling I wondered. So, I paused, stepped back and watched my calmness. Aha. I realized I was opening the door a crack in the dark little room I call my mind. My thoughts were no longer on automatic. My monkey mind was taking a nap. When I removed those dark, monkey mind, jumble of thoughts some light appeared. I began to practice more and more as feelings of joy or peace are not very common to me since fibromyalgia. (I also realized that this is a form of meditation called Vipassana or mindfulness. You can google “mindfulness meditation” if you are interested).
Is my fibromyalgia any better? Is my pain any less? I don’t let myself think about that when it comes to saying NO! to my thoughts. I just want to enjoy my calmness and the joy and not try to grade my performance or put a value on it because then I’ll just go back to my old guilt groove because I’m probably not doing it enough, or maybe I’m not doing it right because that’s the way my monkey mind works. I know now that it’s my monkey mind demanding “proof that this works”, telling me to measure my pain and then give it a grade. NO! I feel joy and calmness and peace. That’s what counts. My body is only a vehicle for ME and ME feels calm. “I” feel calm but my body may feel something else. That’s ok. I feel calm. That “I” is the only part of this package called human being that really counts.
I look at this way. My body has fibro. My body is going to feel pain until…….so why not take my joy when I can. I now realize that my thoughts have a everything to do with how much joy I feel or don’t feel. Joy doesn’t happen by accident. Neither does depression. My thoughts create my emotions and they can be under my control so saying NO! to my thoughts is a good way to achieve joy instead of depression. Therefore I now have a tool that increases my ability to live with emotions like joy even if my body has pain. I am very grateful for that tool.