There are things that seem too much to handle sometimes. I am told I am a trooper – I am strong – I am admirable. The truth is I am weak and I. Am. So. Tired.
I’m tired of being held hostage by my illness. I am tired of the unrelenting pain. I am tired of trying to constantly explain so much in order to be minimally understood. Most of all I am tired of what all of this does to my family.
The most empty feeling I am left with is when I am sharp-tongued and harsh with the people I love because I am suffering. What is this doing to THEM?
I suddenly became paralyzed with grief at the thought of altering who my child becomes. So much of her young life has been filled with worry about me, and seeing me so broken. I have been absent for many things, and when I am involved it is a struggle. Her eyes often meet mine and mouth, “Are you okay?” What has my being so ill done to her little heart and mind? Has all of this crap damaged her? The worst part of it for me is that I can never get the time back. I can only focus on what is ahead and what I can do from here.
What can I do from here? I just do not see an end in sight. After taking some great steps forward – I am back to a place I didn’t want to be. Lost. No answers.
The past several days have been a deep struggle. I am confused and frustrated at the moment – all because of the pain and the unknown. I search for ways to keep my mind off my body, and today my mind just keeps going back to my little girl (who is suddenly not so little anymore). I pray and hope and beg that answers come, and pain is gone or fleeting. Though I may get upset and down, I keep telling myself something good has to come from all of this! I am waiting on the good. Oh God, I need some good!