Lost and Found....and LOST Again....

I know I haven't posted in a while. The absence of posts is almost symbolic of what life is like with a chronic illness. People forget..... The familiar philosophy "out of sight, out of mind," can describe what I am referring to.

Meanwhile, people go about their lives and I lay here, the same as always. Stagnant. Stuck like a prisoner in my own body and mind. I think of how much time has passed since I last worked, graduated with my doctorate, went to dinner with a friend, did anything that remotely resembles an activity that the "former" Amanda would have done. That appears to be how time is now measured in my world. How long has it been since I last did this or that?

Lately the fatigue has been so severe that I have had no energy to function. People who aren't chronically ill cannot truly comprehend what this means. I will try and describe it in more specific terms, but it is unfortunately one of those things that unless you experience it, you cannot really grasp the meaning. This means my daily life consists literally of laying in bed. Every day all day. All night. I push myself to go and get out of the house, but when the fatigue hits this badly, it becomes super challenging to do that. Getting out and doing things becomes more and more infrequent and the norm is laying in bed. Regardless of the amount of time I spent resting, it never feels like it is enough to quench the thirst that my body feels it needs. No amount of sleep is ever enough to replenish my body enough to boost my energy.

An entire weekend passes. Then a week. Two weeks. I look around me and observe the things that others are capable of accomplishing and I think WOW! I am here resting, thinking I will be better in just a few days. I have to. No one can possibly feel this exhausted by doing nothing but rest. Of course I do things to keep busy, but my body is not active. A few days come and go and no change. "Unhealth," or illness to me is the way health is to "normal" people. It is backwards. Most people spend the majority of their time healthy while it is the complete opposite for me. I think that used to be me, those people milling around in the world. It's difficult for people to comprehend this aspect of a chronic illness-fatigue. Hell, it's hard for me to understand how my own body can possibly feel so tired even after sleeping and resting constantly.

I have things on my "to-do" list that will roll over from one day to the next, making me feel incredibly lazy. I understand, at least on a cognitive level, that I am not lazy. I would never have been able to get my doctorate if I were a lazy individual. But as the time passes, and the gap increases between the time that I graduated and now, the window of opportunities in my mind closes that much more. The hope that used to reside inside me that I would somehow find a way to work within the limitations that come with this disease quells.

I once was feeling better-felt like I had found another purpose. That the reason I was meant to suffer with this horrible illness was so that it would lead me to my true purpose. I am now questioning that. I again feel lost. I know it must be an important part of my process. Whenever we question something it usually strengthens whatever it is we are questioning that much more in the long run. Either that or it will lead you on a completely different path in life. I guess I will find out. I know I need to TRUST THE PROCESS....but it is so hard. Especially hard when I feel so alone and feel like most people don't understand what I go through every day. How hard it is just to keep it together.

I feel extremely overwhelmed because I cannot do what I normally can do as a result of pain and fatigue. I feel lost and out of control. I had so much potential. I am so tired of being sick and tired. I hate questioning "What could have been?"

"What would I be doing if I didn't have Behcet's Disease?"
"What would I look like?"
"Where would I live?"
"Would I be married?"
"Would I be a mother?"
"Would I be happy?"
"Would things have been better..... or worse?"

Maybe BD saved me from a fate far worse than this. Although that is difficult to imagine, it's not impossible. It is, however, impossible to truly ever know the answers to these "What if?" questions. I must therefore try to learn to do something that I have been struggling to do for years:  to let go of the me that was and accept the me that is.