Chronic pain becomes chronic when it persists longer than 6 months and is resistant to medical management. Millions of Americans are chronic pain patients and some exper...
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A day in the life . . .
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I had posted this for another group, but I thought I would post it here as well, as I'm considering writing a pamphlet or short story that people can use to give to people who don't understand pain. I would appreciate any suggestions.
I wanted to share this with you all. I hope you won't mind how long it is. I opened my eyes and admitted to myself that I've been awake for quite a while, and the pain that I felt in my nightmares was real and I was now feeling it more intensely. I struggled to get my brain to tell my arm to reach over to get my morning pain meds - I hurt so badly that my brain was fighting me, so that I wouldn't feel more pain. I finally I won. My arm moved to reach for the night stand, but something was terribly wrong. My arm felt heavy - like it was made of lead; I tried to turn my body to help my arm. My body refused to move. WTF ?!?! I manage to make my body move, but it's so heavy . . . and all of my skin feels like ill-fitting coveralls. It doesn't feel like it belongs on me my body at all, and I fall back onto the pillows. Today I can't even put on my act for the kids. Raising my head takes all the energy that I have, but I have to go to the bathroom. I drag myself out of bed and lean on the bed, the footboard, the dresser, and then the wall to get there. I go back to bed, totally exhausted. My mom brought me something to eat. She has been so good to me. I don't know how I will ever repay her, although she thinks I'm sick because I had so much responsibility at a very young age. I think she feels guilty for my illness. I have to find a way to relieve her of that guilt. There is no way to know why I have all this. I know that some of it is hereditary, and I am the lucky one in the family to get illnesses from both sides of the family. At least my siblings are healthy. But, my mom does everything she can because she thinks it's her fault. When I was growing up, my mom and dad worked the night shift and because I showed that I could handle responsibility, I was the one who was left in charge. When I was 13, my mom had my youngest brother. He was 4 1/2 pounds - full term. He was in hospital for a week, and then he was released. My mom went back to work, and she left me in charge of my of my siblings, including my older sister, and an 11 year-old, a 9 year-old, a 6 year-old, a 2 year-old, and the baby. Everyone was afraid to touch the baby, except for me. Two years later, she had my youngest sister, and I continued to be in charge after school. I seriously doubt that this is the reason for my illnesses, but my mom feels the guilt. She won't tell me that she feels the guilt, but she says reason that I'm sick is because I was given too much responsibility at a very young age, and as a mom, I can see that she feels guilty. Anyway -- back to the story. I cannot move. I am too heavy. My skin feels like a foreign object. My fingertips feel like I've been in water for a long time. My whole body hurts (joints, muscles, tendons, veins), and after I ate, the abdominal pain starts. I used to have it only on my right side, but now have it in my right rib cage and through to my back, and on my left side through to my back. My head feels like it's going to explode. I hope the meds start working soon. Something has changed. I think a nerve in my abdomen has been affecting my legs, but today I feel the blood flowing through my legs and to my feet. My feet are HOT! The lower 6-8 inches of my legs and my feet are hot, and they hurt. I think the pain is from the arthritis. I also have the joint pain in my whole body. My hands hurt pretty badly too. Every joint in my body hurts. It's a good thing I'm too heavy to move. I have to concentrate on breathing. My chest feels really heavy. Breathing is a chore. My eyes are so dry that I can't focus on the TV. I have to find my eye drops, but that means moving again. Maybe I'll do it the next time I have to go to the bathroom. I can just listen to the TV for now. I fell asleep for a while and woke up with more pain. Maybe I shouldn't sleep anymore. I'm tired of having the nightmares of being in severe pain, then waking up feeling the pain. I can't seem to be able to escape it. Just five more days to my doc appt, I can hardly wait. I got up to try to go downstairs. Not a chance! I couldn't even make it to the door of my room, so back to bed. Maybe tomorrow will be different. I hope. I pray. I cry, and the tears just flow, silently. At least the kids won't hear me crying, that's a plus, and so there is something to be thankful for . . . Posted on 04/01/08, 03:04 am |
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Unique, I certainly did enjoy this story and I think it's "great" that you're thinking of doing a short story as I've always found your post to be well written and articulate. I have one suggestion that you might cover and that would be touching on the subject of our actual physical pain. I read something just this morning from my son on how he was made to feel like a wimp from his dr because he did'nt just take his pain like a man....And only a few minutes later, I found myself apologizing for seeming like a cry baby in my own journal. I don't know why, many times, we feel we can't awknowledge our pain. I told my son, that even our Lord Jesus Christ cried out in pain from the cross. It doesn't make us wimps or cry babies. But I see more and more people with CP trying to justify their pain for the fear of being looked upon as somehow being weak in the eyes of others.
Good luck in taking this on and if you do write it I would love to be among the first to read it. Good for you! 
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That was very well written and it sure gives insight to what you go through on a daily basis.
I think putting it into words is not only healing for the writer, but it also helps those who don't experience pain first hand understand what it's like.
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I am new here today.After reading this wonderfully written article,I think I have come to the right place looking for friends and comfort.That is beautifully done and so articulate as someone said.
JP
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I feel for you and as you.
I wake up occasionally from nightmares of, say, being tortured to find out I am simply in horrible pain. The trip from my bed to the meds is too long to make; I need a crane to lift me out of bed, shift me over, take the pill and then drop me back in bed on a heating pad. 40 minutes later, I can function, maybe. I try to do that early enough so that I can put on the "normal" act for my kids. Not easy. I tell them straight out (they are 6 and 7) that the pain makes me impatient and irritable. I explained I love them even if I seem angry - it's not at them. I invite them to get in bed with me and read to me, as I keep my eyes closed and heat on and TENS unit on and pain meds on. They are sometimes the best add-on remedy. Almost every morning, I feel as you do. Often in middle of the night, I have the most horrible nightmares, either about something physical or emotional that's tearing me up and I wake up sobbing, real loud, realizing I am simply in a huge amount of pain; I have asked my husband before to wake up and bring me some meds. It's terrible. In the AM, I open my eyes and consider whether I can disappear or cease to be. There's usually not just an instant wave of pain recognition but also nausea and general ill feeling; I feel horrible and think I may never ever get up. But I must. And I do. After I take some meds and sleep some more, I typically can will myself out of bed, shower (that helps with the hot water) and be OK for my kids for an hour. The evenings are worse. I am crabby and in pain and impatient and I don't want to watch Stewart Little 2 and I want to be in bed and medicated and not feeling or hearing anything or anyone. Hard on them. Hard on my husband. I share your pain. - Nili.
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Nili, I am sorry that you are in so much pain, and as you can see, I can totally relate. I will pray that you start feeling better, and that you will again be able to do more with your kids, as is what I wish I could do.
Dale, you hit the nail on the head, as you usually do, with your wonderful insight. We do seem to be a group that apologizes much to often for something that is totally out of our control. I will keep that in mind with my writing. Thank you for that suggestion. Socalmom, thank you for your kind words. JP, I am glad that you feel that you have come to the right place. Welcome to the group, and I am very glad that you are here.
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UniqueDestiny - Excellent effort and Dalecl you have described the story of my life. I look great. You'd never know.
I think people who've not endured and been humbled by pain think that those of us who have just aren't able to handle the level of pain they can. We know this is bunk, there are people with pain and the vast majority of the population is 'pain free' and has never had a long lasting debilitating bout of any kind of pain. They don't even realize that we exist.
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Darn girl, you were tired before you even got started with life.
I am sure your mom had no other choice while you were growing up. Mine didn't either. She worked nights 6 days a week. So, when we came home from school, she was at work. My 4 sibs and I basically raised ourselves. It's hard to be a little kid, and have to tell your friends you can't play because you have to go home and cook for the family. Oh well, seems Mom has the time and opportunity to pamper you now, thank Goodness you have her to help you.
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