The carpenter strikes the hammer toward the nail and misses, hitting their thumb instead. Ouch, that hurts. They may jump up and jerk the arm around and even suck on the sore spot but after a few minutest they will be back to swinging the hammer and pounding nails
I wake up each morning and take inventory: My feet are not feeling bad, the ankles are a little sore. The legs, left one bad, right one good. Thighs, left one feels bad, right not so bad. Lower back, good for today. Middle back hurts, and so on until I reach my head. This is my daily routine before getting out of bed. I need to know what I am up against each day.
My disease is called Isaac Syndrome, do not feel bad if you have not heard of it, most doctors have no knowledge of it either. It is a neuromuscular disease which affects the entire body and is chronic. Among the symptoms is chronic pain. Chronic simply means it will not go away, unlike our carpenter friend who hit their thumb and experienced acute pain, mine is chronic.
People with chronic pain do not need to learn to live with it since they are already living with it each day. This task has been done, you wake up each morning and are alive and your pain is there. However people with chronic pain, like myself need to learn coping mechanisms to help get through the day.
These ten steps are what I use. Using a concise program like ten steps is easier for me than remembering other strategies. This is sort of like Dave Letterman’s top ten ways to cope with chronic pain. Some of them come from a pain clinic where I was an in patient and some I have developed on my own. Here are my steps.
1. Find doctors you can trust.
Trust is the big word here. I once went to the best neurologist in the area with a pedigree longer than an interstate highway. He has walls full of degrees and a reputation rising among the stars. He also has the bedside manner of a dried pinto bean. One time he patted me on the back and told me I would soon be not be able to walk or eat, come back to see him in about six months, and have a nice day. I am not making that up. I never went back. I now have a team of doctors who work together, even though they are not in the same office. We are all on the same path and they cause me no stress.
2. Understand your pain.
I am not one who needs to know every scientific thing about my disease. I place a great amount of trust in my doctors. What I do want to know is how my pain is produced and what, if known, causes it. My theory is too much information is dangerous but just enough is helpful ammunition. I remember a gentleman in the pain clinic who was told by his surgeon that his back muscles snapped like a guitar string. He just could not get rid of that image and it caused him great pain. That sort of information I do not need.
3. Accept your pain.
This might be better as number one but I am putting it here instead. To be very blunt if you have a chronic disease or condition, one which cannot be cured you also have pain. Some people have just a little pain some people have a lot, No one handles pain better than the next person. I’ll repeat that. No one handles pain better than the next person. Pain is personal. Only you understand what your pain is. However, if you do not accept your pain it cannot be managed. If you spend all of your time chasing a cure, you have missed the point. Your pain is not going away. Chronic pain is always going to be with you. Always means forever. Yes, I do keep informed of any advances concerning my condition and am participating in a study on my disease, but I am not chasing a cure.
4. Use drugs.
Yes, I use pain medications and I am probably addicted to them. Is this a problem? No, it is not. Remember that I have chronic pain and it will never go away. I will always need pain medication so why worry about addiction? Here’s what I will tell you from a layman’s point of view. The pain meds loose their effectiveness when you keep taking them over a long period of time. So if you are popping pills and only popping pills for your pain, soon you will have no pain relief from them. Further, I like to babysit my grandchildren and drive. I tow a 32′ Airstream trailer across the country and if you think I am on pain meds while doing those tasks- forget it. I am not. Be sensible with pain meds but do not be afraid to use them. One more thing. I once had a doctor who refused to give them to me because he was afraid of addiction. I got rid of that doctor because he did not understand chronic pain.
5. Learn and practice good body mechanics.
You already have a condition which gives you pain so it makes no sense to add to the pain. Practicing good posture and proper body mechanics will not increase your pain. Notice how I say it will not make you feel better? Good body mechanics, just makes good sense. Follow rules like only lifting with your back, do not twist your torso into the car but sit and turn your body around in the seat. Sit on the edge of the bed and place the side of your head down first while lifting your legs up and then roll onto your back. These and other tips can be learned by an Occupational Therapist. Take the time and learn them.
6. Exercise regularly
Everyone can exercise so do not say you cannot. I have exercised in hospital beds, wheelchairs, and walkers. You have no reason why you cannot have a regular regimen of exercise. Join the YMCA. When you first start, tell everyone you meet, and I mean everyone, from the gas station attendant to your spouse that you joined the YMCA and are going to exercise regularly. All of those people knowing of your intention should give you incentive. Regular exercise helps in many ways. Discuss your exercise plan with your physical therapist or your doctor and then stick to it. Do not do your exercises at home because you will not follow the regimen. When you are with other people you socialize and are more prone to stay on schedule.
7. Get a full night’s sleep
I cannot sleep without pills so I take pills before I go to bed. If I do not, I toss and turn all night and get up feeling terrible. Do whatever you need to do in order to get a full night’s sleep.
There are times during the day when you cannot take pills and need to be alert even with your pain. I have learned to focus. The pain is there but I will take my forefingers and rub them around my thumbnails trying to focus on making one go clockwise and the other go counterclockwise. Soon my attention is on my thumbs and not the pain and next my attention is on the subject at hand even with my fingers still circling my thumbnails. There are many other methods, this is one I use.
A tense body is a sore body. During the day I will tense up from my pain and I need to relax but I cannot just say OK time to relax I need a strategy. My favorite is the muscle game. You can play this game anytime and anywhere. Some people use it to help them sleep. I sometimes use it to help get out of bed in the morning. Here’s how to play: Concentrate on the end of your toes, then tighten the very tips of your toe muscles. Do this quickly and release, do it again and release. Concentrate on your feet and then tighten your feet’s muscles. Do this quickly and release, then repeat. Go next to your ankles, lower legs, knees, thighs, hips, waist, stomach, chest, shoulders, elbows, wrists, hands, and fingers. Next go to your neck, back of head, face, eyes, top of head. Finally tense your whole body and release then repeat. Sometimes I will vary the game when in pubic so I am not squeezing my face or ears up in strange ways but it still works for me.
I am not a winner. My disease is no blessing in disguise, and it sucks. There is no silver lining, good or bright side about it, it just sucks. These words are coming from a chaplain with a strong, deep belief in God, Jesus, prayer, and spiritual healing. Will I ever be cured? No. Will I ever be free from pain? No. Do I need to suffer? No. My “healing” comes from a deep belief that I do not need to suffer. My disease and pain can be managed, and with it, I do not need to suffer. I have been given the wisdom and power to put aside my suffering and it is no longer a part of me. I can laugh. I can spend time with friends telling stories, laughing and enjoying the fellowship while feeling no pain at all. There are books, magazines, internet sites, movies, and plays which entertain me for hours of pain free time. My grandchildren, children, their spouses, and my wonderful wife all keep me from suffering. These are gifts, and being a spiritual person I believe they are God’s gifts to me, all I had to do was accept the gifts. I can laugh.
There is no way I can tell you how to handle your chronic pain. What I have done is share my methods of managing my pain. Hopefully this has been helpful to you. If there are enough comments I may write the top ten things to answer when asked: How do you feel? When you have chronic pain.
I wish you the best and hope you find comfort and acceptance in your quest to managing your pain. My thoughts and prayers are with you.