Just the other night after two straight weeks of more than the average daily challenges, I sat on a chair in my room with the window opened and looked up at the stars shining, feeling the peace in the air and just wondered to myself, Why does it have to be so hard down here? My thoughts continued to go deeper into the confusion of existence itself so I pulled myself back to the surface. Michael was still awake so I couldn't lay down until I knew he was sleeping. I decided to write. I am generally optimistic and choose to always focus on how to manage better, how to help Michael but sometimes I just simply get exhausted. This is what I wrote.
I Have A Dream
A dream to become all that I can be , a dream to do something that will help others.
I long to be out there
I long to be on my feet an hour without having to pay for it as pain is always there in some way.
I long to sleep without rushes of heat that make my body sweat within minutes, only then to shiver from the cold as I either change my clothes and repeat the same in two hours or choose to remain wet because I am too exhausted to get out of bed.
I long to say when asked that I am good and mean it.
I long to feel all of my body parts at all times without the tingling, burning, tightness, weakness and a led like feeling.
I long to not feel intoxicated when I am confused or disorientated especially on a set of stairs
I long to be understood although I can't expect people to know what I go through.
I long to not feel so alone in this dis-ease for words alone cannot bring understanding nor do I want pity or to complain.
So what will I do???????
I will be there for that someone and make sure they will never feel alone. I will show them I understand.
Then I will feel my dream has come true
That person will be my son Michael
Ping my blog
wow Naomi
ReplyDeleteFrom your heart to mine - so many feelings and emotions expressed into words I have never found the courage to share. I too live with daily constant chronic pain, weakness and disorientation "especially on stairs". I too long to say I am good and really mean it. But for you, all that is on top of your journey with Michael where you have to put your self on hold to meet his needs. You truly are a remarkable woman and I thank you for sharing your pain.
Thank you so much Anne, wow I never knew you had chronic pain, I guess like you said you never share it, I don't go anywhere afraid that people will expect too much of me. That could be simply someone saying, " We have to get together". In my world that seems impossible because you can't predict pain and what time I do get I grab for myself to do something that takes me away from all of my responsibilites.
ReplyDeleteSo wow , I commend you to be doing what you are doing! Not many people can do what you are doing if they suffer chronic pain, it sure does take a strong positive person and the right enviroment. Well thank you for sharing with me, I will send it out into the universe for both of us to continue to be strong. Thank you for your kind words, they certainly mean alot to me.