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Pain
Having several new diagnoses has been a shock to my system in several ways. Not only is my body now fighting itself for each disease to gain dominance, my brain is fighting itself trying to recognize what is actually happening to my body itself. Each disease has its own set issues that stay churning within different parts of the body and fighting for that part of the body to be the one who is generating the most pain. The pain that radiates from each part of the body is different but the same. Honestly to me at this point pain is just pain and there isn’t much that can differentiate it one pain from another pain. The pain just builds up and creeps out of the body anyway it can to let itself be known.
Every day there is pain. No matter what I do the night before to ease the pain, it never helps. It might soothe it for a temporary moment in time but it never lets it go. Each day as I wake up, that is if I slept the night before, the pain screams out to me to let me know it is still there and it is raring to go and to fight whatever good intentions I had planned. I fight through the pain, push it to the back, get up and figure out my day and how I am going to proceed through the fight that my diseases are waging against one another. Every day I have to decide what is going to get my attention and what I am going let go for another time.
As I have to make decisions, I feel the guilt raising up within me because I can no longer be the person I once was before all this raging started up. I long to be the person I was before I realized that all my pain wasn’t normal and not everyone experienced life as I was. Oh, how I long for those days when I just thought the pain, I was feeling was what I was supposed to be dealing with. Now I know it wasn’t normal and the pain was an indication of something more, something horrible lurking, something that would change my life and how I lived forever. In fact, it changed not just me but everyone around me.
Those around me had to come to understand that I would never go back to being how I was before the pain took over my life. They had to realize that I was going to have to alter my life, alter myself, and alter how I functioned in the world. We would all have to face this new hurdle together and come to realize that it is okay if things moved a little slower, plans were changed last minute, or I was just wasn’t present at all. The pain was going to take over everything no matter how much I wanted I fight it and push it away; it was going to present. The pain was the ever-present guest that wouldn’t leave and left a mess in its wake.
As the battle continues to rage within me, I feel like I am losing more and more every day. The more things I have to give up or push off until another time, it just breaks me. It breaks my heart, and it breaks my brain. I end up forgetting to do the thing I really wanted to do but couldn’t because it didn’t fit into the pain scale of that day. I have to decide what thing holds the most weight for me that day and what actually needs to be done for me to function. If I have a doctor’s appointment, I need to decide the night before or a few days before to wash and fix my hair. That way the pain that goes along with that process is already over with and I could rest up for that day.
I have learned short cuts to make sure I can get through the pain and still function at the level that I need to. I often find myself pushing more and more through the pain to get things done. I still find it hard to let go of who I used to be and what all I could accomplish in a day, an hour, or even just a few moments. There are days where I will just simply ignore the pain, push and push some more until I am on the floor in such pain that I am questioning my own existence. I try not to have these days often but sometimes they do get the best of me, and I fall into that horrible pattern and I ultimately pay the price for days afterword. The pain always wins out no matter how much I try to push it away and ignore it.
It’s funny to me that certain diseases shouldn’t cause pain, but yet somehow within my body they have decided to take the same route as the other diseases and show themselves as pain. The doctors have found this baffling but state that it is not uncommon if you have multiple diseases. The diseases will take the path of least resistance to make themselves known to the host. Each disease is fighting to be the dominant ruler of the body and be the number one pain giver. I am not sure why this is the rule, but it is the rule that my body and the rule that all of us from doctors, to me, to my loved ones have come to understand.
As my days linger on, I am growing more accustomed to the pain being present in both body and life. There are times that I am afraid of the pain and what is causes but then there are times when I just accept it and what it does to me and my life. I still want to be the old version of myself and be able to function and do everything I was able to do before but I can’t and I am not ever going to be. I am still coming to grips with it all, even after all these years. No matter how many years are passing I am still continually dealing with all that comes with having these types of pain. The pain is dictating my life now, which I never thought would happen when I got all the diagnosis’, I thought that the pain was the one thing that was going to be managed from the start. At the start though the pain was going to be the last thing that was to be touched or managed. To this day the pain is the one symptom that the doctors tackle last or not at all.
The reason the pain is not touched often or at all is because it is all over the body, in every pore, every organ, every nerve, in every part you can think of. I am the only one who is able to distinguish where the pain is coming from and it never seems to come from the right place for the right doctor’s appointment. I can describe the pain and the doctor is sympathetic but states that is not their area of expertise so they cannot prescribe anything or help. The few times that the pain comes at the right time, I have been told that they can prescribe me opioids, or medication in that family of pharmaceuticals and I refuse to take them. I refuse to take them even though the pain is unbearable most days because of what they can do to people. I don’t want to become addicted; I don’t want my mind messed with more than it already is from the diseases, and I don’t want to be deemed incompetent to make my own decisions for my medical care or life.
As I sit here writing and releasing my thoughts, I do hope that I could help someone understand what autoimmune pain is like, help someone who suffers from this pain know they are not alone, or just give knowledge. Pain no matter where it comes from is never something anyone wants to deal with and nor should they have to deal with it. I don’t judge anyone who takes the medication for the pain because I know that the pain can be so unbearable that you can’t function, I am there a lot of my days so trust me I understand. I don’t judge anyone who suffers through the pain because they are holistic and don’t believe in big pharma. Pain is pain no matter what you believe about how to deal with it. Know that as the pain rages through me and stalls my life more times than I care to acknowledge I am making it and I am dealing with it the best I can. If you see me out, know that I am still in a massive amount of pain but I am fighting through it because I can’t let life stop and I can’t just stay in bed or on the couch, I have to have some sort of normalcy. Pain is my constant companion reminding me that I have a war tormenting my body and mind but it also is a reminder that I am alive and I am fighting every day to survive.