This post is about chronic pain, plain and simple. I’m not looking for sympathy, neither are those who share my condition. Just looking for understanding, respect and tolerance.
I never ever thought I would be “one of those” people who had to tolerate pain in one or more parts of their body 24 hours a day, 7 days a week. Yet, here I am. My feet are “riddled with arthritis” as my orthopedist told me. Also my knees. Osteoarthritis. An interesting diagnosis, I thought at the time, surely there is a cure. No, he said, only pain management. “Pain management”? Okay, then give me a pill and let me go back to my life, I thought. I wasn’t yet aware of how much my life was about to change.
I tried several different pain medications, injections, etc. and none seemed to keep the pain at bay for very long. And, in the beginning, it was even “that bad”… more of a nuisance than a driving force. I might limp while going to the grocery store, or shudder at the thought of crossing a large parking lot. I obtained a temporary handicapped parking tag with the intent of turning it in after a few months and I got the pain under control. The months lagged. I kept asking for a renewal from my doctor each time the expiration came due on the tag. I figured, surely by the time THIS ONE expires, I’ll be able to walk better and longer distances.
Last month I had a bi-annual checkup with my primary care physician. I asked for the permanent handicapped parking tag. He looked at me and winced. He clearly did not want to go that route. Indeed, he told me if he gave me the permanent tag, that I might start thinking of myself as “handicapped”… and he didn’t want me to do that. And he forbade me to use the electric carts in stores. However, he did give me the new tag. Neither of us was happy, but I have to be realistic. The pain, especially in my feet, was now unrelenting.
I think I finally came to grips with the fact that I will have to live with chronic pain for the rest of my life. There is no cure for osteoarthritis, and it will, in fact, only get worse. I would soon get used to measuring my activities by the amount of pain I am currently in, or am likely to be in at the time of the activity. That probably sounds pretty unbelievable to most of you reading this. My life is now measured by increments of pain. It makes sense, considering 90% of my particular pain is in my feet, making it very difficult to walk. My knees are secondary, and 3 herniated discs in my back count for something as well. I’m always looking for “shortcuts” to my activities. Can I get dropped off closer to my destination? Is there comfortable seating? How close is the seating to my drop off point? Are there stairs? Hoping for a ramp. Will I need my “cane” (my father’s wooden shillelagh)? Will there be lots of people to stare at me, and judge? Will there be people I know there, who do not know of my hidden secret? Will I have a lot of explaining to do? What if it just hurts too much? What if I just can’t stand it another minute? These are things that run through my mind any/every time I need to go outside my home. Yes, even when I go to work. So, admittedly, my social life is waning.
People with chronic pain think way differently than you do. And granted, even though my personal pain is considerable and distracting, there are so many others that are way worse off than me. They are my heroes. I know them and feel their pain as I do my own. Chronic pain “people” do not stand out in a crowd. You cannot look at them and know there is anything wrong. And they (we) do not like to share that information with anyone. If shared, there is always skepticism. People say things like: “Suck it up,” “C’mon, it can’t be THAT bad,” or “You’re just faking it.” No one wants to be held up to that kind of ridicule. Or they’re look you up and down as if they’re going to see some clue as to whether or not you are really in pain. And when they see no clear evidence, there is disbelief.
Chronic pain is exhausting. On a “good day”, at home, I might get one or two chores done ~ dishes, laundry, vacuuming. On a “bad day”, I cannot stand. I sit in my recliner with my feet up, take aspirin, and feel them ache and burn all day long. If I need to get up, I have to thrust myself to standing, then wait until my feet give me permission to move, to shuffle to my destination and then back to reclining. The entire episode is unbearable and to be avoided at all costs. Sometimes I use a prescription rub-on gel to curb the pain, but the side effects are not worth using it constantly… only when I really cannot bear it. Restraint is an important lesson. Chronic pain alters your mind. Your priorities change or may be clouded. You don’t think right when you hurt. Have you ever had a migraine, or a sprained ankle or any broken body part? Think of that pain as never ending. It will be with you for the rest of your life. No healing, no getting better. At first you just deal with it and don’t really believe it will be forever. Then it becomes a “normal” part of your life. It’s with you every day, all day, just like your pinky toe. Then it gets worse and you’re thinking desperately. And you imagine what it would be like to be pain free… just only for one day, even if just a few hours. How glorious would that be? Chronic pain makes you think irrationally. It gives you feelings of desperation, depression, worthlessness, dependence. ALL. THE. TIME. Do you even get that? There is no relief. Hence the word: C-H-R-O-N-I-C. You feel like your loved ones, those that “know”, resent you. They don’t believe you. They think you’re lazy because you don’t do your housework or go shopping etc. anymore. “You’re just lazy.” For me, even my biggest love, quilting, has suffered. I can’t concentrate on it when my mind is full of pain management wishes. I cannot, in good conscience, ask my husband to do things for me that I can no longer do. I feel like he resents me… even though I know he doesn’t. We’ve talked about it. But I cannot shake the feeling.
I recently joined an Osteoarthritis group online on Facebook. Wonderful bunch of people, mostly women, who share their experiences and ideas for pain relief and how to try to live a “normal” life. Exercises, weight loss help, potentials for medications that I haven’t tried. I know in my head that I need to keep moving and exercise or I will end up immobile. They give me hope. Even a chuckle now and then. I know many people scoff at Facebook, but there is so much knowledge there if you know where to look and how to use it. I have been blessed.
What’s my point to this post? Chronic pain. It’s real. It exists for thousands of people, including me. We don’t look for sympathy. We don’t look for an “easy out”. We just want to be acknowledged, understood and respected like everyone else. These days, everything is all about “tolerance”. Quit thinking we’re “fakers” and get with the program.
Unfortunately, I expect very few people will ever seen this post. In a way that’s fine with me, as I’m not too comfortable sharing all this with anyone anyways. Anyone I know. Funny how I’ve put my entire life out here in my blog, some of which is pretty graphic and shocking, but THIS makes me uncomfortable! LOL!
Thank you for stopping by and checking me out.
Blessings ~ Tamara