Okay, before I begin, I wanted to share this hilarious picture. It's so totally funny, because it's true. Okay.. now onto the real reason I am chatting at ya today.
Going through the tremendous process of finding a life that includes the thing that causes us pain. Whether it is fibro, MS, Parkinson's, and so many others... we are fighting debilitating pain every single day. I think about it now, 5 years in and I realize that if someone would have told me this is where I would be, I would have laughed them out of the place. I was working full time. I lost it all.
I decided a year and a half ago that I am really tired of being this disease. I have slowly been clawing my way back to as close to "normal" as I can get. I know what my limits are. However, I believe with all my heart I am going to live my life and push my limits and so what if I hurt myself right? I'm in pain anyway. My kid tells me I could not be a rally driver because it would hurt me. I cannot make them understand that the level of pain I live with on a daily basis would have them in their beds. It would lay them out. It has taken me years to get to this place. Now I might hurt after a night of a decent party, that does not mean I am missing the party.
This place in my mind, where I don't feel like I have to tell everyone that I have fibro. This is a new thing for me, I felt I had to explain why I was skipping all over and having trouble speaking. Skippy (the version of me that has severe fibromyalgia) likes to be especially naughty when I am trying to have a serious conversation, or when I am at a checkout and there is money, and wallets, and goods, and words and it is so fucking hard. I used to explain, I have fibro, or nervous condition. Now, if it is important that they know, of course I say something, but I refuse to continue to be defined by a disease.
Also, alert here. Most cops do not believe that this is a real thing. They certainly have no idea what it is, or how to treat someone that suffers. If you can get away, that is the advice that I have.
Oprah Winfrey once said that she heard somewhere that people have 5 "lightbulb" moments in their life. I have had way more than that. You know what I mean? That moment when you finally get the lesson that the universe needed you to learn. That moment when it feels like the weight it lifted off your shoulders. Fuck I hate cliche's, but they are handy little buggers.
Pull it in. Hang on and pull it in. If you start a journal or even just making notes about feeling a certain way, you will find out a huge surprise. You aren't made of chaos. It feels like you are. One step at a time, and you are way more predictable than you think you are.
Your family is going to suffer because you are sick. I am very familiar with the challenges that comes along with illness in a household. My kids finally told me the truth that my illness messed everything up. This shattered me. They said some mean stuff, but they were talking to Skippy... Not me.
I took it badly for a while. It is hard to realize that on top of all the suffering that we go through, our families are suffering as well. I hated that. I didn't want to accept that guilt. I have to own it, though. Yeah, I am sick and it sucks bad. However, these boys are trying to grow up and find themselves, of course me getting sick fucked some things up. We are working through it, mostly they can see that I am trying.
I fail.a lot. Last night for example.. we went to fireworks. Life hack, headphones. However, make a very long track with very few quiet spots and listen to music.. If I hear fireworks with no protection it knocks me to the ground. I am light/sound sensitive. Last night, I didn't think about quiet parts in the music. They decided to light one of those boom boom boom boom ones that go off near the ground. I was sitting in a beach chair, the ones close to the ground; I slid out of it and landed on the ground. Pressing with all my might to the headphones to keep the sound out. It was funny. You have to laugh those things off.
Changing your life, and changing yourself isn't going to be uphill and positive every moment. You won't learn a damn thing if you don't fuck some shit up. You are going to slide out of your damn chair a million more times. You are going to get back up, a million damn times. If I can do it... anyone can.
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