Posted on Jan 4, 2011 in Blog |

Today, I visited with a fellow Lymie who has been filled with despair and hopelessness. The past four days have been very difficult in my own household as well. It’s not a good scene when all three of us are feeling pain and fatigue.

Sometimes, I envision going in and reading the riot act to my LLMD; I’m so filled with anger and resentment at this disease. Since he is the one treating the disease, I somehow think he has control of my symptoms. And going in angry at him is not going to get either of us to a good place.

My friend marveled at my ability to find laughter even in the midst of my own anger and pain and fatigue. I don’t know why, but I am thankful that God has given me laughter as a coping mechanism. Because I really am angry. I want my life back. I want my brain back. I want my pain to end. I want the fatigue to cease. I want my son’s pain to vanish.

I WANT MY LIFE BACK. I am so sick of being in bed, of almost passing out at the grocery store, of looking at the piling laundry, of watching my husband have to cook the meals, of eyeing the pile of books I can’t comprehend.

I know I am healing, but this month, it seems to be at slower than a snail’s pace. I’m Angry, Lonely, and Tired. And I can’t afford to waste my energy in the negative realm. So, I sat and jotted this down and sent it to my doctor in preparation for our meeting on Thursday.

Thank you
– for doing this job day and day out; figuring out how to heal us; how to help us.
– for being my cheerleader when I am desperate and hopeless; for believing in me when i can’t believe in myself.
– for helping to manage my pain.
– for offering me a safe place to share my fear, my anxiety, my lowest moments.
– for giving me hope.
– for sharing your tenacity, your determination to mend this broken, wounded body.
– for sharing your patients (and patience) with me so we may lift one another up.

The past four days have been difficult for Jeff, Stephen and me, and for too many fellow patients.
Knowing that I am coming to see you on Thursday in itself lifts my spirits, gives me energy and willingness to get through this week.
I wish I could turn this disease off at least for a few hours each day; it would become bearable that way I think.

Just want you to know that I know your job is not easy, not fun, not invigorating.
But I thank God each day for your willingness to continue working with your patients.
I thank God you are hanging in there with me. with us.

We need you to kick this bastard to the edge.
We need you to heal us.