Sunday, January 22, 2017

Because this is my real life...

     A friend recently told me that I should write about what my life is like, what living with chronic pain is really like. That was a few days ago, and since that time, I've thought about it a lot. Are my friends sick of hearing about my pain? I know my best friends and family who care, because they ask. 
     Initially I resisted, because unfortunately, my health rules my life. I get angry, I get restless, I get frustrated, I get inspired, I get motivated, I feel a lot of things every single day.
     Three and a half years ago I was a normal, healthy 39-year-old woman. I've lived with depression for many, many years, and that was the extent of my health problems. Depression, in of itself, can be hell. Then one day it all changed. Suddenly I had spasms in every single place possible in my body, and I couldn't move because my lower back hurt so bad. I went to the doctor who gave me hydrocodone, muscle relaxers, and sent me to physical therapy. I had an x-ray finally ordered, and it said I had arthritis. That's all they told me. I asked for an MRI. That showed degenerative disc disease. Basically, the spongy discs between the vertebrae in my spine were losing their sponginess, and degenerating. I had a tear in one, bone spurs on my vertebrae, etc.
     I started seeing an orthopedic doctor. Fast forward two year and I'm still on hydrocodone, and many injections into my lower back later, I am not feeling any better. I find out that I have disc problems in my entire spine. Um, okay, but I'm young. It doesn't matter how old you are, what race you are, it can happen to anyone. Basically, in the years I was being seen in Savannah, nothing changed.
     Fast forward to 2015 - we live in Washington state, and I'm extremely lucky to be able to see who I'm told is the best doctor around, even though I'm not an active duty servicemember. The first appointment with him, I left crying in relief. He looked at all of my records and told me, "Basically, your back is pissed." He knew exactly what was wrong with me and how he could help me.
     So far, since 2013, I've had my lumbar facet joints fried twice, my right sacroiliac joint nerves fried three times, and my left sacroiliac joint nerves fried once, and have an appointment to have it done again in March.
     I know it can be boring reading this, so I'll get to the point.
     My quality of life has plummeted faster than I ever thought possible. Folding laundry is next to impossible. Sounds like a dream to most people, right? It's embarrassing to me, and still is, to have Adam gone for months, and to come home to still find his laundry in the bottom of the hamper. I have a really bad disc right in the middle of my back that Addison has to crack every night so I can move that part of my back again.
     I'm in constant pain. The medications may take the edge off, but the pain is always there. Whatever store I go to, I have to get a cart so I can lean on it while shopping. I order anything online I can, because I find that I can do one big thing a day, whether it be going to the library or some very light grocery shopping. 
     I can never make solid plans with anyone. I never know what my pain level will be on that day. I've had to back out of plans, social events I was really looking forward to, because of pain. It makes me want to cry every time Adam asks me if I want to go out to dinner. By that time of day, the pain has increased, and I feel like the world's worst wife, because I can't imagine how I can get dressed, sit in the car, and spend time sitting in a restaurant with the pain I have. 
     My dogs are fat. I tried, once, to take them for a walk. I spent the next week on the couch. I once had a friend say to me, "I wish I could spend all day on the couch." I know they didn't understand, but that cut me like a knife. I don't WANT to spend my life on the couch. I want to be able to cook dinner for my family, I want to make plans with friends, I want to be able to go grocery shopping without having to spend the rest of the day on the couch. 
     I don't talk to a lot of people about this, like I said. I don't want sympathy, but I want to educate people about chronic pain and what it's like to live with it. It's robbed me of a huge part of my former life, a life I miss every single day. 
     I can't lift anything heavy, for fear of slipping a disc and ending up in the ER. I have to rely on others for so much, and I've always been strong physically and independent, able to do everything on my own. I could lift the bags of dog food, use a ladder without fear of falling off, and so many other things I go to do before Adam or Addison tell me, "Don't do that!" 
     It's been 12 days since I had the nerves burnt in my right SI joint. Today is the first day I'm not still in excruciating pain. It makes me want to do things, fold laundry, vacuum, everything I have to usually plan out every single day so I don't do too much. But I've learned - the more I do, the longer it takes to recover. I've finally learned that I have to make myself sit down and rest, otherwise the pain just gets worse. 
     I still have spasms, in places you'd never even know you could have them, and in every muscle in my body, every single day, despite the medication I'm given for them. No one can answer why I have these spasms. 
     This is my life. This is going to be my life until the day I die. I won't "get better." It's basically maintaining where I'm at now, which means getting my nerves fried in my spine and sacroiliac joints, every six months, because even though they should not grow back that fast, my body likes to do it's own thing. 
     Thank you to all my friends and family who check on me, who ask me how I'm feeling, who bring me tokens of friendship on days they know I'm having procedures done and will be out of commission for awhile. Thank you for listening to me vent, to listen to me cry, and for the advice and compassion. 
     This isn't how I pictured my 40's going, or the rest of my life. It is what it is, and some days I get down, depressed and frustrated. Most days I try not to think about it, even as I am taking up to 30 pills a day just to try to control the pain, the depression, and of course a multivitamin, because I'm getting old. 
     Invisible illnesses are rough, regardless of what type it is. We look fine on the outside, but on the inside, our bodies are constantly going against us. It's hard to explain what it feels like, both physically and emotionally. 
     I'm always more than open to talk about my health. Much like I am open about my depression, I am open about my chronic pain and how much it has changed my life. I want to educate people about invisible illnesses. Ask me questions, and I will answer. 

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