So maybe Fibro has variable visibility? We have “fibro fog”, so why not go with the weather analogy? After all, that damn weather – humidity and the barometric pressure – rules our lives.
Variable visibility: "You don't look sick." "You sound like you are doing better." "You look good today." Thank you. We are glad we do not look like we should be wearing sackcloth and ashes. We are glad we don't look like death warmed over. That's good, thank you.
But could you observe for a moment? Could you see the pain and apprehension in our eyes as we slowly sit down? Could you see us wince as we squirm in the chair to try and get comfortable? Could you hear and see the sigh, the slump of our shoulders, and the sigh of relief, as we finally do get off of our feet?
Visibility: So, could it possibly be: "You don't look sick. I don't know how you do it when you feel so bad." "You sound like you are doing better. I hope that means you have found something to help with your pain." "You look good today. I hope that means you are having a good day."
If you could work with us a little, maybe we could be visible all of the time. Maybe you could understand that this is it. This is us. This is the way it is going to be. We have fibro/CFS/ or any one of the many other chronic diseases that suck the life right out of us.
Here we are. We don't like it, but we are trying to manage as best we can. Can you please see us? The person you have known is still in here--I hope--somewhere in here underneath the pain and fatigue. Please see us and accept us as we are now. Maybe if you do maybe, just maybe, we can accept us, too. Maybe, just maybe we can find ourselves again. Even with the pain and fatigue.
Later,
me
CJ, in time -- maybe, just maybe...
hey cj.........again....beautiful post!! I've been hurting very bad and it's hard to type. Just wanted to say hi, though!
ReplyDeleteThis is going to sound strange but some days I wish certain friends could see me having a bad flare at home. In such pain that I can't get out of bed, total lack of energy, can't walk, crying nonstop, looking like I just crawled out of a grave! I say this so that then when they see me having a good day, they would know it was a good day!! I am so tired of certain people/friends thinking I am fine...take a pill and you are all better. change your eating habits and you are all better....i hope this makes some sort of sense...just needed to vent. sorry!
ReplyDeleteThe weather sooooo predicts how I am going to be feeling! That is why I want to move to Hawaii :)
Hope you are having a pain free day...
Hello CJ,
ReplyDeleteI just came back to my computer, where I was getting ready to leave you a comment, just before my phone rang.
I'm going to leave you a comment because this is real time, and in real time, the phone call was to tell me that my dear friend, my adopted father passed this morning.
I enjoyed your post, only I can't remember it now. My heart -- it hurts.
I didn't listen. I heard him calling so loud and clear and I didn't listen so I didn't see him when I could have. Last night driving home I felt him and told my son and our neighbor I could feel him. I said I hope he is alive and I should call him. I felt an urgency to call but did not. I was too tired.
My first response is this gut wrenching feeling I don't know what to do with yet. My second response is anger and I'm angry at being tired. There were many days where I just wanted to call but the fatigue, the brain fog, and all the other stuff that comes with this "invisible" beast we face, prevented me from being able to either communicate or go visit my dear friend.
So, in this real time I'm writing in, I've experienced a tremendous loss. I've lost my friend and I feel angry that this illness prevented me from being able to spend time with him in his last days on this earth.
With a very sad heart,
dogkisses.
Miss Dogkisses,
ReplyDeleteI have posted to your page. But, I can't not respond to what else you have said here: the anger at this disease. This time this damn disease robbed you of time with your dear friend. And this time, so wickedly, it took your last chance to be with him or talk with him. I can't know how painful that is for you. I am so sorry.
It is impossible for those who don't have Fibro or CFS to understand how much this disease takes from us. Yes, it causes unending pain and fatigue. But, it also takes from us so much of our lives -- time spent playing and horsing around with family and friends, our ability to do the work we love and enjoy, hobbies, sports, activities we enjoy. But, so often it is the simple things like making a phone call or making a quick stop at a friends just to say "hi" that hurt the most. We are too tired for a cup of coffee, we hurt too much to make that phone call, to answer that email. It causes the pain and fatigue, but it takes from us so much more.
I am so sorry about Sonny. You are both in my prayers.
me
CJ