Yesterday I met with a dear, cherished friend and we had such a grand time chatting and laughing. I had the best time and a huge part of that is because she was so gracious and allowed me to be honest about Fibromyalgia. She didn't act put off or annoyed when I had to plug one ear or when I lost my train of thought. It was so lovely to be able to go out into the world and feel functional. It's always a treat when that happens.
Midway through I felt the Fibro start to tug. It wan't gone or anything before that but there is a certain point when you can actually feel it creep on a bit stronger- random pain bits in the tuck of the arm, the glaze that creeps slowly over temples and eyes, muscle spasms that you try to ignore. There is still that desire.... that desperate belief that maybe you have mastered it! Maybe you can ignore Fibro! Maybe you don't really have it and it was all a mistake or mis-diagnosis or not a real sickness after all.
But no.... it is real and it does catch up and you cannot ignore it. I do not say this in a defeatist fashion. No, I mean this as more awareness for the self. For the YOU that you keep trying to be. The me I am trying to be. There was a moment when the waiter came to get my plate and I almost lifted it to him, but then I realized how heavy it was and I did not pick it up. I knew instinctively that I could lift it but if I did that would mean my wrists would ache and throb and feel like little knives chasing into skin. So I didn't pick it up! A huge victory! Early on, my pride would have had me lift the plate anyway and not care that I would "pay the price" later. I would have been ashamed, embarrassed, and annoyed at myself. I may have even gotten into a funky mood. But growth has occurred... sometimes it doesn't feel like it, but it has, and it is a huge victory in this altered lifestyle.
I stayed out for many hours yesterday and I had fun. Last night I thought again, "maybe I escaped the aftermath. Maybe this time it'll be different." But I felt it come on as I fell into sleep and today I woke up feeling slammed by a bus. The fatigue is unrelenting, pressing into every space it can find, sounds are a full on assault, and my mood is not so pretty to say the least. Think about it- are you super pleasant when you are sick and all you want is sleep and a warm heater on your face (maybe that's just me), and for the mood to just go away? Feeling only the stifling breath of sickness and being annoyed that you cannot just be better?
It's frustrating to never be able to escape Fibro. To have to weigh everything.... if I go out then I will not be able to do this or that or whatever. Maybe I shouldn't even be blogging right now because I am in a snit and I don't want to say mean things.
But I want to be real. It's disappointing. Over and over again. It's like being tricked. Going out for a day and being a part of the outside world and then coming home with high hopes of feeling well and able again, even if we tell ourselves we don't. But when the crash comes it's devastating. It's loss. It's not wanting advice from the normals because as much as they love us they just don't always grasp that our life IS different and they cannot cure us with their magical diets and secret celery juices and hope. They mean oh so well, but when we are struggling to stay afloat in the midst of a flare, the words only deepen our anger and our desperation. The pure need to be well, to be able, to not feel THIS storm is unrelenting and severe and suffocating. It is a battle understood only by those also in it.
We are tired. Of doctors telling us we are too young, belittling us, telling us that our big task a day is not a big task (this actually did happen to my friend), which has the potential to crush someone. When you have Fibro doing laundry, cooking a meal, going to the store, creating projects for ourselves at home as to not go insane with cabin fever or helplessness or depression or isolation.... these are HUGE victories for us. The stuff that normals take for granted. The stuff I used to take for granted too. We are tired of well meaning family and friends and even strangers trying to talk us off of a ledge we aren't even on. We aren't lazy. We aren't just giving in. We aren't passive about this. We fight. Every single day we are strong and brave and we talk with you about the new television show or we pour our glass of almond milk even though the carton feels like it may snap off our wrist. We laugh. We research our conditions and we face prejudice and disregard. We don't tell you every single time it hurts, because we have learned that this is the Fibro life and we have learned through our depression and agony and loss and strife. We have sat in this boat amidst the choppiest of waters and even if we sometimes wanted to just jump overboard and not hold on so tightly anymore, we have and we do.
We are survivors. We are strong. We fight.
So please be sensitive. It may not be a big deal to you when we fold towels or babysit the grandkids, but for us... oh, for us it is a mountaintop.
We do not want your pity. We don't need it. We may be real and transparent with our struggles, but we don't want to be coddled (well sometimes I literally do ask to be held like a fetus but it's more of a joke), we just want compassion. The leeway to be sick and not have to justify it at every turn.
Thank you to my wonderful, supportive friend, Nikki. You made an outing yesterday absolutely tolerable and enjoyable and I will always be grateful for that.
