When someone asks you how it feels to have a chronic illness, this is the perfect analogy!
written to me from my dear friend Audrey Straker
“Gentle squishes, positive light. As a fellow chronic disease sufferer I won’t tell you to feel better soon because it is not possible, I won’t say stay positive, not possible, I won’t say push through it all, not possible. I will say be gentle with yourself, I will say lose the guilty feelings, I will say take whatever is necessary to get through a day, I will say I am always your friend even in your absence because I live the same way you have to.”
This touched me so deeply, because those who are suffering from chronic illness are the only ones who can truly understand that our battle is never going to be over. There is no cure. Lots of surgeries, pain, fatigue and the list goes on and on. Some say that God only gives us what we can handle or it makes us stronger. The truth is that we weren’t chosen for any of this because of our strength, we just have to go on because there is no alternative. We are not heroes or special at all. For what ever reason life decided to serve us up a cart load of lemons and we have no choice in the matter.
We have days where we feel positive and want to interact and can do a little more than other days. But, we also have days where we cry, and ask “why me”. When our own bodies are attacking us internally, it makes for a very wicked brew emotionally. There are not enough pain pills to ever get rid of all the pain. And the ones we do take, wont work very well if taken for long periods of time. Still we manage to move forward. We keep our tears hidden for the most part. Nobody can see the emotional scars that we carry. We become an emotional broken mess inside, and yet we try to hide it all with a smile. We know that most people just do not know how to handle our struggles. It makes people uncomfortable, and I do understand that. It is hard to comfort someone when you truly can’t do anything to help.
So for all those who are suffering, please know that you are not alone. There are many of us who do understand and the only way we can help one another is to talk about it. Find groups or others who also have chronic illnesses. Please trust me when I say, it makes a huge difference having someone who understands what you are dealing with. When we have these ailments one of the things we all tend to do, is seclude ourselves and that can hurt us even more emotionally.
So in my dear friend Audrey Straker’s words….”Be gentle with yourself, loose the guilt and do whatever is necessary to get through the day”
Gentle hugs, Deborah
One of the things that hurts me more than the pain from RA, is that I say things that I never would have before all of this. Sometimes my words hurt those who I love the most. I would never intentionally hurt anyone, but especially those who I love. I have always been one to say my words carefully and make sure that what I do say comes out in a positive caring manner.
As my pain has increased, I have noticed that sometimes things come out of my mouth in a way never intended. I have hurt those who only care about me. I have been angry at those who do not deserve it at all. I immediately feel horrible about my words and wish I could take them back. This is why I have always chosen my words carefully, as you can never take them back. Hurtful words can be remembered forever. This is not how I want to be remembered.
RA not only affects the person living with it, but all those who are near to the person affected. By afternoon I have usually gotten my emotions under control and can put on my brave face, but mornings are still a demon I continue to battle and so far I am loosing that fight. It is not a good excuse but my pain is so severe in the mornings that I feel angry. Angry at what it has taken from me, Angry that I am not the same person, Angry that this will continue to get worse. Angry that my loved ones are having to deal with this other me, Angry that all my plans will have to be put aside or forgotten completely. Angry that my promises have all changed.
I see it in my children’s faces and I hear it in their words. So while I am the one with RA, they are suffering from the side affects of it as well. A mother always wants to protect her children, no matter their age. I can no longer hide what is happening to me and so I pile on more guilt for what they are having to deal with.
While I cannot fix or change what is happening to me, I pray that God gives me the strength to go through this in a graceful manner that will allow me to still be the kind and loving parent and friend that I have always been. And I must remember that those who love me, are suffering also. I am not alone in this journey and the ones around me need comforting as well.