Let’s talk about pain. Having a chronic illness comes with a lot of pain. For me, pain comes from a lot of sources including achy joints, muscles, bones, and even gastrointestinal problems. I also have the added complication of a spine that is totally F**ed. This means that pain is a constant companion for me. On any given day my baseline for pain is a solid 6 (on a scale of 1-10, 10 being the worst). Some days I’m lucky and my pain is only at a 4, while other days I’m at an 8 or 9. My pain often travels too. Some spots are constantly in pain, while others change from day to day. One day it’ll be my hips or ribs, the next day it’ll be my fingers, wrists, and ankles. Then my stomach may decide to get in on the pain game. Some days will be some weird combination of a few or all spots. It’s totally random and always ready to surprise me.
My lumbar (lower back) and cervical spine (neck) are a mess because my thoracic spine (mid spine) is totally fused. When I was 14, I had spinal fusion surgery for scoliosis. I have 2 metal rods permanently attached to my spine. After 26 years of this, my neck and lower spine have severe arthritis with bone spurs growing everywhere. I have degenerative disk disease with bulging and herniated disks. I have limited range of motion and constant pain and stiffness in my neck and lower back. This will get progressively worse over time. I’ve already come to terms with this part. It is what it is and there is nothing that can be done about it. I’ve tried epidural shots, but even that is only temporary relief.
My joints have become a major problem in the last few years too. All of my joints like to play the surprise pain game. I’ve discovered joints that I wasn’t even aware of because they decided to start hurting. They can hurt for a few days or a few weeks. I’ve worn wrist and back braces, and wrapped my ankles. Sometimes my ribs hurt so bad that taking a deep breath or laying down for too long is excruciating. Lately my shoulders have become a major problem. My shoulder pain became too consistent and unbearable so I finally went to an orthopedic specialist to see if there was an actual injury that maybe could be fixed. During the exam, he noted “crepitus”, or popping and crackling with movement in both shoulders. X-rays revealed that my clavicles are misaligned and there are small bone spurs growing. Otherwise the shoulder bones seem to be in good shape overall. It also showed that the lowest part of my neck (C5-C7) has bad damage, with correlating pain in my shoulders. He predicted that the soft tissues in the area are likely inflamed, adding to the pain. I have an MRI scheduled for later this week to check the condition of the soft tissues. Moving my shoulders or lifting my arms is excruciating. I’m hoping that epidural shots in my neck will help with some of this pain, if that’s even an option. We’ll see what the results yield.
My GI system has been a major problem for me too. I remember having stomach issues on and off since I was in high school. I remember avoiding food altogether at times because I couldn’t deal with the pain. It’s odd though because it kind of comes and goes. I won’t be able to eat much for a few days or weeks, and then be totally fine for again for weeks. About 3 years ago the pain became so unbearable that I had to take steps to figure something out. A colonoscopy and upper endoscopy found nothing. I started the FODMAP diet to eliminate certain foods and slowly reintroduce things back one by one to see what triggered me. I determined that gluten was a major source of suffering for me. I was skeptical because I never believed the whole “gluten free” fad that many people had become obsessed with. I realize some people actually suffer with a real wheat sensitivity, but I know too many people who use this excuse just as a health fad. I fought it for a while, but eventually realized that it was real for me. Dairy is also a trigger for me. When 90% of my diet consisted of gluten and dairy, I had a major challenge to overcome. I had to completely relearn how to eat while completely eliminating these 2 staples. I cried daily for the first 6 months. I starved for a while until I learned how to eat around these ingredients. At this point, I’ve adjusted to my dietary restrictions, but I still hate it. Oddly enough though, I still suffer from GI problems. I don’t even know what’s triggering it anymore. There doesn’t seem to be any kind of pattern to it so I can eliminate a trigger. There are just times that my body doesn’t like any food in it. I can follow all the rules and still suffer. Being completely empty is the only relief I get during these times.
I spent last Friday in the ER because of my random stomach pains. I generally avoid going to the hospital at all costs, especially after my near death experience in November. As a chronic illness sufferer, I’ve developed a strong dislike and distrust for the medical profession. Anyway, after eating, I was struck by such excruciating stomach pains, I thought I was dying. I was convinced I had pancreatitis or gall bladder stones, or some other serious complication. I tried waiting it out, but it kept getting worse, so Eddie made me go. I’m glad he did because by the time I got to the hospital, I was so delirious with pain, I couldn’t even speak. They gave me morphine, but that didn’t even touch it. I was a full 10/10 on the pain scale. I don’t remember the last time I was in so much pain. After 7 hours, multiple doses of morphine, CT scans, ultrasounds, and blood tests, I was sent home with no answers. How could I be in so much pain and not have any obvious cause?! They suggested it was a stomach ulcer and told me to follow up with a GI doctor. I was furious and crushed! How could they send me home in this condition? The soonest appointment I could get is 2 weeks later. Now I just have to hope the pain doesn’t come back before then or I’ll have to go back to the ER just for pain relief.
It’s funny… when you go to the doctor with a complaint, you expect a solution. You expect the doctor to fix the problem so you can get on with life. Unfortunately that’s not always the case, as anyone with a chronic illness or chronic pain can attest to. We are very used to being blown off or told that there is no solution and we need to just deal with it. It’s very disheartening to know that there is no help and this is just how life will continue until we’re dead. I can feel my body doing things, but they can’t see any evidence of it. I always say, I’m the healthiest sick person around. I am disabled, always sick and in pain, yet on paper I’m the picture of health. It’s just unbelievable.
I’ve tried making peace with my pain. It’s never gonna go away, and will likely only get worse over time. I try not to think of how bad I’m gonna feel in another 10 or 20 years, if I’m already this bad at 40 years old. I’m trying different methods for managing my chronic pain without medications. I am doing everything I can to avoid opiates. I used meds consistently about 8 years ago, but decided I don’t want to go that route anymore as long as I can handle it. I don’t like how they make me feel and I don’t want to become addicted. I feel sick and tired enough without narcotics. Why would I want to intentionally feel more sick and tired each day by taking them? I can’t actually control my pain so I try to play mind games to overcome it. I meditate to distract myself and refocus my mind on other things. I read a lot and sometimes watch funny tv shows and movies. I listen to music and watch nature through my window. The goal is to keep my mind occupied so I can focus on something other than the pain. I read about viewing pain as a companion, or a friend. It’s always there. It’s loyal and never leaves me. Maybe if I can learn to view it as a friend, it won’t be so unbearable. I’m not sold yet though.
Living with chronic pain is a tricky thing. It is so much more than just physical discomfort. It is a complete and total assault on all the senses. It is physically and mentally exhausting. It tears at the soul and destroys the mind. At times it is so consuming, it completely overtakes everything. When you are so blinded with pain, it is impossible to function in any way. Science has found that chronic pain actually rewires the brain. We are not designed to live this way. Pain is meant to help us identify an injury and prevent making it worse. It is meant to come and go. Our brain is not meant to feel constant, severe pain. It causes emotional distress and keeps our body in a constant state of stress and tension. I feel that anyone who lives with chronic pain deserves an award, especially if they carry on with life like anyone else. I function with daily pain that would completely disable any healthy person.
If you suffer with chronic pain, you are a damn warrior! Don’t let anyone tell try to convince you that your feelings aren’t valid because “someone else has it worse”. That is the biggest load of crap anyone can say. No matter what situation anyone has, there is always someone else who has it worse. This does NOT mean that your feelings are not valid. Here’s something that helped me:
If you are laying in a hospital bed with a broken leg, you are clearly in pain. Right? Then you find out that the person in the next bed has 2 broken legs. Does that suddenly make you pain invalid? NO! You still feel pain. It’s not a competition! Your feelings are valid regardless of what someone else may be experiencing. Allow self compassion. You don’t need anyone’s approval to feel what you are feeling. If it hurts you, then that’s enough.
I will try to continue using my methods for overcoming my pain. I’m sure at some point I will be forced to use opiates, but I will hold off as long as I can. For now, I will just try to do my best each day. It’s all there is to do.