I have come to accept a way of life that is simply unacceptable.
I am angry right now as I am coming to understand that I gave up on a piece of me.
Chronic disease. Damn that term. I was diagnosed with a chronic condition long before I decided to leave my job, but when I was diagnosed with two it seemed as though the weight was simply too heavy for me to bear.
Understandable. I can forgive myself for caving under that burden. What I can't forgive, or understand, is why I am still laying down on this ground.
I have glimmers of hope within almost every week now. I have nearly complete days where I am feeling close to normal in the health range. I've been able to do laundry, keep up on house chores and cook again. I left the house on my own twice this past weekend. I walked places. I have read three printed books (NOT DIGITAL) with minimal difficulty. I am tapering off of my medication with all of this still a reality.
And yet, somehow, it is not enough.
This morning I got sick again. Not from my brain condition, but from my old-standby - the digestive issues. Before 9:30am I have already been to battle with my insides more times than I can count. So, as I prayed for the pain to stop and for my second attempt at breakfast to stay with me I thought, "Why is this still happening?"
When I asked my doctor this same question after he told me that my colonoscopy revealed I am "in remission', his response was a simple, "Oh, then I guess you have microscopic colitis. You should keep taking your medicine." OK. I'm doing that. However, does having a name to what is wrong with me suddenly make it OK? I felt that way when diagnosed with IIH, but that's because I knew the name could finally guide me toward treatment, this time the name feels like an afterthought, not a tool.
I don't eat gluten. I don't eat dairy. I just found out I still have high cholesterol - WHAT ELSE SHOULD I STOP EATING? And, honestly, what difference does it make if none of the food stays with me anyway? I've lost 40 pounds, should I be happy or scared?
I am not only not working now, I am not living. Based on the way this morning went, I will, most likely be in bed (and the bathroom) most of today. Forget my muscles, now my SOUL is starting to atrophy!
This is just dumb.
Getting so sick caused me to do something that I decided in high school I didn't want to do anymore: QUIT. I hate it.
I am exhausted. I am in pain. But, today, I am finally angry and maybe that's enough to wake the warrior within.
I don't think any of my doctors have a full grasp of how I have altered my life to garner the "improvements" in each of my conditions they see. It is time they realize that I have had no intention of living like this permanently. It is time that I inform them that I would like to bring my life back up to human speed and, for that, I need them to work with me. It is time for me to speak up.