I Die A Little Every Day Because I Have A Chronic Illness
I cried in the shower this morning. My body shook with tremors of desperation only to be cut short by the notion that if I allow myself to feel this, I will only make the pain worse. I had to go back to the doctor. My symptoms no longer controlled by my current regiment. She did what all doctors do. They draw blood. They attempt to discern an answer from the listing of numbers like old Celtics drawing conclusions from runes. Trying to find a solution to a puzzle no one seems to be able to solve.
What is wrong with my body?
My current diagnosis of Fibromyalgia no longer applies due to abnormalities in my bloodwork. My doctor now wants to go back over everything again. I feel like a cold case being handed off to a new investigator. Now I have new specialists, more tests, no promise of an answer. She tells me there’s a fifty percent chance they’ll never find what they’re looking for and I need to prepare myself for that, that I will never be able to call it by its name. A name for the thing that is tearing my body apart from the inside.
Sometimes I wonder why I need an answer so badly. Is it because of my children? I need to know if what I have is hereditary. Did I pass this on to them? Is it lingering in their tiny bodies as you read this just waiting for the perfect storm of disease and diet to cause havoc? Or is it because not having an answer means that they can’t treat it?
I will never have a cure.
The prospect of living my entire life this way or worse sends me into a panic. I try not to think about it. I have a hard enough time getting through the day. But getting through the day is all I’ve done for the last five years. That’s no way to live a life. I squeeze every drop of goodness from the days where I’m in less pain. I pray that the days where my body decides to betray my trust are few and far between.
But I’m years in now with no hope on the horizon that tomorrow is going to be any different. Is this my new normal?
I struggled for the longest time to adjust to the level of pain that I used to have. Five years ago I thought that was awful. I stayed in bed writhing from it. I begged and pleaded with God to either kill me or heal me. Neither of those things happened. But I did learn to deal with it. It’s incredible how the human body will adapt to misfortune. I’m not healed, but I plateaued out at a level four on the pain scale. When this all started that pain was at an eight but five years and 1,825 days of constant pain will cause you to adjust your mindset.
It is mind over body at this point.
On my worst days, I drag myself out of bed screaming on the inside but projecting nothing but a smile filled good morning to my family. If only they would look me in the eyes they would see all the pain I’m holding in to keep them from feeling bad for me. There’s nothing they can do, and there’s no need to worry them.
So much of chronic illness is learning how to suffer in silence.
No one, not even your closest loved ones want a daily play by play of how crappy you feel. It gets old as does the retelling of it. Whenever I’m asked how I am doing, I often reply with just fine. Unless it’s noticeable, if my legs are swollen or my speech is slurred or if I’m behaving oddly, I can’t hide it. I have to tell the truth.
For so long I avoided what was staring me in the face. I had to go through the stages of grief before I could even explain it to my spouse. I lived in denial that something was wrong for two years. It took me getting lost on the way to my kids’ school a route I took twice a day for years to admit something was not quite right.
I went through a depression that laid me up on the couch for months at a time. It was easy to want to stay in bed because my body felt like it was dying. I bargained with God, and when that didn’t produce a solution, I got angry. I got so mad at everyone healthy. I hated people who could do all the things I wanted to do with my children that I no longer could. I hated my body. I hated my life. If it weren’t for my family, I would have ended it all years ago because a life like this one, is no way to live.
But my anger also pushed me. I started fighting against my body. Pushing it to do what I wanted it to do. I changed my diet. I exercised more. For about a year I found relief or at least to the point where the eight on the pain scale that had become my day to day life went down to a four.
Something changed, I don’t know why or when, but my illness started fighting back. The pain is getting worse a little bit more every day. I try to manage it without prescriptions as best I can. I’m saving those for the day when life becomes so unbearable that I can no longer handle it on my own.
I know that day is coming and I dread its arrival because I know when it happens, it will mark the beginning of the end. And I’m not ready for that. Every day I lose a little more of myself. I remember a little less. I hurt a little more.
I’m losing a battle against a body that wants to give up, and I refuse to let it.
I Die A Little Every Day Because I Have A Chronic Illness
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