I’ve been depressed lately. I’ve only spoken to 2 other people about the issues bringing me down and I won’t discuss the details here but there are a few things I do want to say.
No one really understands what a person with chronic pain is going through. They will never understand until they’re the ones suffering from it. It’s debilitating. It’s exhausting. It’s sad, and it’s lonely.
I can’t just make plans to go do something because I don’t know what my pain level is going to be from one day to the next, or even from one hour to the next! When it rains or when the barometric pressure rises, I am in more pain than usual.
I don’t want to be sitting at home. I’d like to be working. I’d like to be doing the things I used to do. I’d like to be able to pursue the hobbies and activities I thought I would be pursuing at this time in my life. I’d love to be able to go visit my grandkids, near and far. I’d love to go to the movies, hit the Mall, or go to a Flea Market. I’d love to go to museums, haunted houses, and concerts. Hell, I’d love to just do the simple things we all take for granted when we’re healthy, but these days everything is a painful chore.
I have good days and I have bad days, but let me be clear: Having a good day does not mean I’m pain-free. It just means my pain level is at a more tolerable level. Just because I smile or crack a joke doesn’t mean I’m not in pain. It just means I’m trying to be as close to “normal” as I can be, for appearances. I don’t like people feeling sorry for me and I sure as hell don’t like being the center of attention. So, I try to be “normal” like you.
I’m not lazy. Chronic pain is not an excuse to get out of doing things. I don’t have the energy to go to events like birthday parties, weddings or luncheons. When I do attend a function of any kind, I have to leave early. I just can’t handle hour upon hour of socializing and appearing to be happy. Another consideration is accessibility. Will I be near a restroom or will I have to walk a long distance to get there? Will there be stairs or an upward/downward slant? Will I be able to sit down? Is there a place where I can rest? Will I have to stand in line? There are so many things I have to consider before doing anything.
When you suffer from chronic pain, you also suffer a loss of identity. The things that made you who you are, are gone. I used to be a cross-country backpacker. It was something I hoped I could back into when my kids were grown and out on their own. I can no longer look forward to that. I used to be a great cook. I used to be a small business owner. There are so many things that made me who I am but now I’m having to find a new me. It’s hard to reinvent yourself when you can’t actually do anything anymore.
I hate when people say things like, “I hope you feel better soon,” or “Have you tried x, y, or z?” Seriously? Yes, I’ve tried everything under the sun. Nothing helps. Someone once said to me, “It’s just arthritis.” If this were just arthritis then I could be more active and exercise some of the pain away. If it were just arthritis I could find a simple remedy that would ease my discomfort. But it’s not just arthritis. I have joint damage in my knees. My legs are bowing outward at the knees. This is what makes walking and moving about so difficult, so painful. Then there are the people who, good intentions or not, are very condescending. Calling me “hon” or ‘sweety” when I’m having a bad day is a sure-fire way to get ghosted!
Chronic pain never goes away. Chronic pain causes depression, anxiety, changes in mood, appetite and sleep patterns. It causes loneliness, grief, isolation, and fear. Yes, FEAR. Every day, I have to think about every movement I make, every step I take, for fear of falling or doing too much and making my pain level go up even higher. I fear that I will injure myself and lose the little mobility I have left. Have you ever thought about being stuck in a nursing home? I have.
I’m so sick and tired of being expected to do things. I only go out when I have to go out. I go out for groceries once a week, go to doctor’s appointments, pick up meds, etc. Yes, I go out to lunch once a week, but that trip serves a dual purpose. I normally have other errands that need to be done. People don’t realize that in between those days is rest and recovery.
On top of the daily struggle, the holidays are approaching. The most depressing time of the year for me. I won’t have family and grandkids around. I won’t be able to cook all the delicious yummies I used to make for my family. I can’t wrap gifts easily, so gift bags it is! I can’t decorate or put up my big tree. I won’t be looking forward to any of what the holidays bring.
I’m not writing this for sympathy or attention. I want people to understand what chronic pain is and what it does to a person’s life. It’s crippling. It’s not my cup of tea and I’m pretty sure it’s not yours either.