Please don’t get angry at my lack of interest in doing things, I punish myself enough. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone, even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another time out, going to places I still love and once participated in with my friends.
I feel like a child at times. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off. Please try to understand how it feels to "lose" things. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….
Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably, or the "thread count" of the sheets aren't high enough. I walk through many of my days in a daze with the Fibro-fog, laughing at me as I stumble and grasp for stablity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk in the mall, the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say "but you did that yesterday!" The hurt I experience at those words, scars me so deeply that I have let my family and friends down again, and still they don’t understand….even how susceptible I am to viruses and germs.
On a lighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love my kids and shine when they give me my hugs. I am fun to be with if you will spend the time with me on my own playing field, is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for you, many times I will be your biggest fan and the world will know how proud I am of you, and how honored I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I will be there in ways that I can. I will give all I can as I can. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….
We become angry and depressed just as you do...... we struggle with being sick, to being angry that no one understands to stay away when they are sick. Then we become angry at ourselves for feeling selfish and thinking of ourselves.... thinking of the added stress on our lives... the added responsibility.... the added guilt. No one will ever know what it's like. So will anyone really ever understand what we're going through?