Pieces of Pain

It’s my understanding, as a lay person, that pain is the tool that the body uses to tell the brain that there is a “malfunction” happening somewhere in the body…like the “engine failure” light in our car. It took me awhile to figure out that acute pain doesn’t always indicate a disaster that requires you pull over and get a tow truck and chronic pain isn’t always something that you can push through and keep on driving to the next exit. Pain can be confusing and that’s why it should be approached consciously.

I have created 4E’s of pain management to illustrate the ways pain effects us as well different things that can be done to better cope with pain.

The 4 E's are:

Education, Expectation, Emotion and Evaluation.

Education:

Educating Yourself

When you are educated about what is happening to your body, you are then able to begin an internal dialogue to soothe your fear and panic. This kind of education can come from your prior research into understanding an existing problem or it can come from asking those around you to explain what is going on. What I have found when I am experiencing unexpected pain is that, often, the fear of what may be happening is equal to the physical sensation and only causes the pain to escalate. Knowledge, or education, can be the first step in keeping yourself calm and not letting the pain get away from you. I often wonder why birthing breathing techniques are not used in cases of pain and trauma. In my experience, after I have mentally understood what is happening to my body and that I “will be ok”, conscious breathing and/or meditation is the most effective way to get my fear and, by extension, my pain under control.

Educate those around you on your experience

The more your loved ones know where you are coming from, the easier things will be for everyone involved. For example, I experience moderate to severe nausea at least once a month, usually more. When I first met my husband, he would try to understand what was happening with me, as it was happening. This created some frustration for both of us because the last thing I wanted to do was talk about nausea when I was nauseas and he was worried and really needed for me to communicate what was going on and how he could help. At some point, I got smart and began to educate him on my experiences when I wasn’t experiencing them. With the nausea, I explained that talking made me feel more nauseas and talking louder than a whisper was really out of the question. I told him things that could be helpful like, cold compresses, sleep or where to find my nausea med, Zofran. Now, when I get sick like that, he can recognize it, and ask me yes or no questions about which thing I need. He’s able to understand me and help me and I’m able to do what I need to do to get through my discomfort more comfortably!

Expectation:

I heard about an experiment once where they blindfolded people and put different kinds of tastes in their mouth…salty, sweet, sour. The first time they told them what to expect before they placed it on the tongue and, no matter how bitter or distasteful, the reactions were minimal. Then, they started giving them false information, like telling them it was going to be salty and it was really sweet. Despite the fact that what they got instead might have been more pleasant to taste, the reactions were strong and they were mostly anger or frustration.

I think of this experiment often. As a patient, it can be extremely upsetting to have a result you had not anticipated.

Let me give you an example:

When I sat down with my transplant surgeon, he told me that after the surgery I was going to feel like I got hit by a Mac truck. When I sat down with my GI doctor before a GI tube placement, which is a day procedure by the way, he told me it would feel like I got stung by a bee. When I think back on both experiences, the trauma of my G-tube was much more intense. It didn’t feel like a bee sting: it was very painful and I spent my time worrying and crying because I thought something must be wrong, this was supposed to fee like a bee sting, right?? After my transplant surgery, I did feel like I had been hit by a Mac truck, but since I was expecting it, I wasn’t worried and was much better equipped to cope with the pain. I remember telling people that I would rather have a transplant than a g-tube placement! Wow. The power of expectation. Do your best to make sure that you are getting an accurate picture of what you are facing before you proceed.

Emotions:

Emotion of Circumstance

Imagine that you are in a bad car accident and you are rushed to the ER and one of your lungs has suffered great damage. The doctors go in by cutting open your chest, pulling up your ribs and tinker around for about 8 hours, fixing your lungs. You wake up in ICU intibated and have a slow recovery…you might be in the hospital as long as a month. How many people think that they would be feeling grateful and happy about this? Why then, when I had nearly the same operation, intibation, ICU and a month long stay in the hospital were my primary emotions gratefulness and happiness? Circumstances. A car accident victim would likely be feeling sad or angry: their life had been interrupted with an unwelcome surgery and hospital stay. My life had been saved.

Think about how our recoveries might differ based on the underlying Emotion of Circumstance.

Emotion of Biochemistry

These are the emotions that are based on the body’s natural response. I have found these responses are very different for acute pain and chronic pain.

When I think about Acute Pain, I think of Fear. During the times in my life when I had acute pain, my initial reaction was always one of panic and a fear of what was happening. The only things I have found that can help with acute pain are knowledge and breathing. I find when I am in that kind of pain, thinking of anything else can be nearly impossible. Instead of distracting myself, I concentrate on keeping my breathing even and trying not to accelerate the pain with my emotional response.

When I think about Chronic Pain, I think of Depression. Chronic pain chips away at you until, slowly, over time, you become depressed and just don’t care any more. In 2003 I was dying from Chronic Rejection and was barely able to move from a chair to a coach in the same room. Although I was very sick, I knew I needed something outside of my illness to allow me to feel as though I still had purpose and direction. I focused on a few things at that time. I read books that stimulated my mind a spirit and began to feel privileged to have so much time to ponder my insides instead of going to work 40 hours a week. Although depression remained a companion, my persistence in finding ways out of the darkness allowed times of tremendous light.

One of my projects was to plan my mother’s 65^th birthday. I sent out invitations, designed the party décor and arranged for my brother to fly down for the event. I created a special game for the guests to play. I organized a caterer and my team of friends and family that came to decorate. I was the director of this big event. To this day, my mother says that is the nicest thing ever done for her. It gave her great joy, was a very fun day and gave me a great sense of purpose. Planning ways to give joy was certainly an escape from my depression. This was just one of many projects I created to give me purpose and chase away the Chronic Illness Blues.

The Emotion of Your Underlying Belief System

An underlying belief system is the foundation from which your actions and attitudes come from. You may be conscious of these belief systems, you may not be.

A common example of an underlying belief system related to pain is: “Why is God allowing this to happen to me? I must be being punished.”

Another common one is: “Why me? This isn’t fair!”

My personal belief system was at one time “I am too young to be so sick. I shouldn’t be having to deal with sickness and death yet!”

Can you see how having a belief system like this may influence your attitude? Believing that you are being punished or that you somehow got a raw deal is going to breed feelings of anger, resentment, self-pity and maybe even shame.

I can tell you that these kinds of belief systems are not helpful and don’t do much in the way of lessening your suffering! The trick is finding a new belief system, one that comes from your heart and not your head.

I have replaced my old belief system with a few new ones over the years. Sometimes I outgrow one and it doesn’t inspire me anymore. That’s when I find a new one.

My core belief system now “There is purpose in my suffering as I have learned much and can give much.”

I also function under the understanding that “my life may be short, but all that matters is that I make choices that I will be proud of when it is time for me to leave this earth.”

Those are for today, they may change next week!

Evaluation:

Evaluate Your Care

First, you must evaluate if you are getting what you need from your health care. Are you getting enough from the docs? Is your pain being managed? If not, don’t be afraid to ask my favorite question: “This isn’t working. What is another way to do this?” The objective is to get your needs met without alienating yourself from your healthcare providers. I’m sure that screaming and yelling is an option sometimes, but often I find the better choice is to state your needs, expect a new plan and if you aren’t getting the desired response, it’s time for a personnel change. That can mean talking with that person’s superior, getting referred to a specialist or find an entirely new care giver with an approach you agree with.

Evaluate your current state.

I have found that it is easy to get stuck in a pattern. I have noticed in myself that if I feel pain, let’s say I have a nagging pain in my shoulder, I will get myself into a pattern of behavior where, even when that pain has subsided, I still behave as though it hasn’t. It’s like I’m in the habit of acting like my shoulder hurts. I have also known times when my pain, usually acute, will come and go in waves. I have been reluctant to change my behavior pattern when the pain subsides because I have this feeling that people won’t understand and will think I am faking or exaggerating. Again, the key is communication.

The Verdict:

There are medical ways to address pain and personal ways to address pain. The things I have listed here are the personal, internal strategies one might employ when facing acute or chronic pain. Usually, serious pain will become central to one’s life. It may cause problems in relationships or cause a major personality change. It may make you depressed or question your purpose on earth. None of these reactions are unusual or wrong, however, it is ideal if you can seek ways to cope with your pain that will enable you to see daylight at the moment the clouds part…if even for a second.