Pain... Pain is my four letter word. I have been in pain for
fifteen years now. Every single day, every waking moment, pain. Some days are
bearable and some days are excruciating. I even have days where I really do
start to wonder how I am supposed to continue living like this. I have a
disease known as Fibromyalgia. I hate this disease. It seems like it is just a
name they gave to a disease for the people they couldn't find something 'real'
in. I have done a lot of research on this evil disease over the past fifteen
years. I have had so many unsolicited opinions from people about this disease,
I have seen multiple doctors, specialists, and natural healers in regards to
this disease. Yet here I am close to tears, on a heating pad, writing
about the pain I am still in.
I have tried all of the drugs that the commercials talk about. I have even tried every pain killer under the sun. They do nothing. Drugs just have zero effect on my pain. I have tried the herbal supplements. What it came down to for me, is acceptance. I accept that I will be in pain tomorrow so it is no longer a surprise when I wake up that way. I accept that I can't stand for long periods of time, so I don't put myself in those situations. I accept that it feels like a hot knife going through butter when someone touches me. Yes, just touches me. It hurts. Don't do it. To me, a simple poke of a finger feels like your finger just stabbed all the way to my bone. It will feel like your finger is still lodged in my skin for at least ninety seconds after you remove your finger. If we are friends that hug, please don’t stop giving me hugs, I need those; people just need hugs sometimes, even when they hurt.
The question I always get - "well then how (or why) do you get tattooed??" Here is my answer, as masochistic as it may sound; because I choose it. The pain that I feel every day of my life is not my choice. It just happened to me. The tattoo pain is a pain that I have asked for, a pain that I can control, a pain that in some strange way makes me forget about my other pain. I needed to have those moments where I was in different pain. It kept me sane. I have since learned other ways to do this, but for a long time it was my only way to cope.
This disease was my number one reason for being suicidal for almost nine years. Pain took a severe emotional toll on me. I have to be mentally stronger than the pain so that I don't let it take over me. Knowing that I was in this much pain today, and tomorrow would only be more pain, made it very difficult for me to desire any more tomorrows.
This is just the normal every day pain. A flare up is a different story. Even now, with my beautiful child and amazing fiancé, I'd be lying if I said that suicide didn't cross my mind during a flare up. The pain is so bad during a flare up that it hurts to even have clothes touching me. Putting on jeans is completely out of the question. I wish I had the right words to accurately describe this pain, but it truly is indescribable. The pain starts in my legs and slowly works its way to the rest of my body. I will notice it is starting because my pants will start to feel like they are burning me. If there are any seams on the pants they will feel like they are burning holes into my skin. By the end of the day this burning feeling spreads to my entire body. I usually make a very hot bath, the kind that turns your skin red; because that is the only way I can find an ounce of relief. I have a lot of very soft blankets for when I can't stay in the tub any longer. I can't just use a sheet because they feel like sand paper rubbing on an open wound. Flare ups are said to be caused by stress, I have found that to be pretty accurate. Surrendering my life to Christ has been the biggest stress reliever, therefore the best treatment I have found so far for this disease.
It doesn't just affect my skin; it affects all different parts of my body and in different ways. I spent a few days in the hospital one year because my legs stopped working. They just wouldn't work. I couldn't stand. After I was evaluated by every -ologist in the hospital, it was once again dumped into the catch all pile they call fibromyalgia. I am aware that I have some bitterness about this disease, but it is just so incredibly frustrating.
I was in a support group when I lived in Florida with a few different people suffering from auto immune diseases. It was educational, but also very heart breaking. People like to compare things, like to say 'well at least you don't have -insert horrible thing here." Just my personal opinion here, but every single person's bad day is worse than your bad day because it is actually happening to them.
It is hard to not complain. I get tired of hearing myself say things like, my neck hurts, my back hurts, my legs are burning, my head hurts, my skin is crawling, don't touch me, can we sit, I need to lie down. It is my reality though. I am so thankful to have a man that loves me through the bad days. I am blessed to have the mother that I do because she has been my saving grace through this entire battle. I am also grateful that I finally came to a place in my faith where I learned to surrender.
The only treatments that have been remotely effective have been chiropractors, massage, acupuncture, and light exercise. When I would have a flare up I would get injections into my hips but the surrounding muscle started to atrophy so we stopped doing those.
Even with all of these treatments the pain has never been gone, not even for a moment. Sometimes I day dream about what it would be like to be without pain for just one minute. Sixty seconds. Then I snap out of it and realize that life is calling, and the laundry isn't going to fold itself.
I have tried all of the drugs that the commercials talk about. I have even tried every pain killer under the sun. They do nothing. Drugs just have zero effect on my pain. I have tried the herbal supplements. What it came down to for me, is acceptance. I accept that I will be in pain tomorrow so it is no longer a surprise when I wake up that way. I accept that I can't stand for long periods of time, so I don't put myself in those situations. I accept that it feels like a hot knife going through butter when someone touches me. Yes, just touches me. It hurts. Don't do it. To me, a simple poke of a finger feels like your finger just stabbed all the way to my bone. It will feel like your finger is still lodged in my skin for at least ninety seconds after you remove your finger. If we are friends that hug, please don’t stop giving me hugs, I need those; people just need hugs sometimes, even when they hurt.
The question I always get - "well then how (or why) do you get tattooed??" Here is my answer, as masochistic as it may sound; because I choose it. The pain that I feel every day of my life is not my choice. It just happened to me. The tattoo pain is a pain that I have asked for, a pain that I can control, a pain that in some strange way makes me forget about my other pain. I needed to have those moments where I was in different pain. It kept me sane. I have since learned other ways to do this, but for a long time it was my only way to cope.
This disease was my number one reason for being suicidal for almost nine years. Pain took a severe emotional toll on me. I have to be mentally stronger than the pain so that I don't let it take over me. Knowing that I was in this much pain today, and tomorrow would only be more pain, made it very difficult for me to desire any more tomorrows.
This is just the normal every day pain. A flare up is a different story. Even now, with my beautiful child and amazing fiancé, I'd be lying if I said that suicide didn't cross my mind during a flare up. The pain is so bad during a flare up that it hurts to even have clothes touching me. Putting on jeans is completely out of the question. I wish I had the right words to accurately describe this pain, but it truly is indescribable. The pain starts in my legs and slowly works its way to the rest of my body. I will notice it is starting because my pants will start to feel like they are burning me. If there are any seams on the pants they will feel like they are burning holes into my skin. By the end of the day this burning feeling spreads to my entire body. I usually make a very hot bath, the kind that turns your skin red; because that is the only way I can find an ounce of relief. I have a lot of very soft blankets for when I can't stay in the tub any longer. I can't just use a sheet because they feel like sand paper rubbing on an open wound. Flare ups are said to be caused by stress, I have found that to be pretty accurate. Surrendering my life to Christ has been the biggest stress reliever, therefore the best treatment I have found so far for this disease.
It doesn't just affect my skin; it affects all different parts of my body and in different ways. I spent a few days in the hospital one year because my legs stopped working. They just wouldn't work. I couldn't stand. After I was evaluated by every -ologist in the hospital, it was once again dumped into the catch all pile they call fibromyalgia. I am aware that I have some bitterness about this disease, but it is just so incredibly frustrating.
I was in a support group when I lived in Florida with a few different people suffering from auto immune diseases. It was educational, but also very heart breaking. People like to compare things, like to say 'well at least you don't have -insert horrible thing here." Just my personal opinion here, but every single person's bad day is worse than your bad day because it is actually happening to them.
It is hard to not complain. I get tired of hearing myself say things like, my neck hurts, my back hurts, my legs are burning, my head hurts, my skin is crawling, don't touch me, can we sit, I need to lie down. It is my reality though. I am so thankful to have a man that loves me through the bad days. I am blessed to have the mother that I do because she has been my saving grace through this entire battle. I am also grateful that I finally came to a place in my faith where I learned to surrender.
The only treatments that have been remotely effective have been chiropractors, massage, acupuncture, and light exercise. When I would have a flare up I would get injections into my hips but the surrounding muscle started to atrophy so we stopped doing those.
Even with all of these treatments the pain has never been gone, not even for a moment. Sometimes I day dream about what it would be like to be without pain for just one minute. Sixty seconds. Then I snap out of it and realize that life is calling, and the laundry isn't going to fold itself.
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