I feel a lot like Bloat the blowfish from finding Nemo. I have reached a beautiful place in my life and with my disease. That being said, now that the boys are back in school I spend my day doing homework, spending time outside, and working my spiritual path. It is quiet. I turn on music that makes me happy, I dance or beat my drum as the song calls for. However, I am at peace. I have found a place of peace in this disease, and if I can do it so can you.
I do notice when the seasons change that I can sit for hours and wonder if it is really hot, or if I just think it is. Should I turn on the air or is this fibro? I know you know what I mean.
I am pretty regimental in the way that I set up my inner rules. Example, if you are going into a store and you are grabbing a drink and a sandwich, do not hold that cold drink for long because it is probably going to make your hands feel super shitty and for me it takes a moment to recover. It affects my whole body. Take a buddy, or make sure that there isn't a long line. Same at the grocery store, get a damn buggy. Even if you don't think you will need one.. and yes, they want you to fill it, it's a marketing thing. Fuck all that.. you cannot carry all those things, not to mention it is pretty great if you get a weak moment you have something to hold onto. It's pretty shocking that I have literally sat down in an isle while shopping there. People do look, but I smile and tell them I needed a rest. They move on because I confuse and scare them.
Anyway, back to bloat. I spend the day and in my head I am like "fuck yeah, you are doing it, you did homework, my fear seems to be abating.. I have not changed my meds. When the boys get home I am like the blowfish though... I find myself saying "wait.. I... OOH There I Go" and I am metaphorically blown up and floating to the top of the tank. Or, flaring and upset.
Even though they aren't mad, they have this energy about them that is super intense. It takes me hours, sometimes the whole evening to calm my body. My husband says, you seem calm.. I respond by saying "tell that to my nervous condition". I have tried taking pills right before they get home, cannabis (it puts me to sleep if I am not careful during the day), everything I could think of. I do not have a sitting place in my room and I refuse to allow this to effect my rules concerning that. No bed till night time.. or get lucky time.. which is actually nice in the afternoon because you aren't as tired. I digress.
My new rule is that I will hide wherever I can, right now it is the back porch. They are not to approach me until they have been home for 20 minutes. They are 16 and 18.. this is not effecting their development. They know that I want to hear about their day and when they were young I delighted in being here when they got home, because that was pre-testosterone. Now the stories of the day, etc.. can wait.
I am getting better. Stop feeling bad because you got this fucking shit fibromyalgia shit. This is not your fault.. but more than that your family wants you as well as they can get you. Forgiving yourself, and forgiving your loved ones for being kinda shitty sometimes is essential to the journey back to version 2.0 of yourself.
What I mean by that is that I held on. I held on to when my husband said that my disease has ruined the way we were. However, it sort of has. He isn't wrong. Delivery is shitty.. but he isn't wrong. The only way you can make it right is finding your center in the chaos and learning how to get there on your own.
Hang in there, and fuck the rest. It will come to you when you are ready.