As it is Fibromyalgia and Lyme awareness month there are a lot of blog events schedule. May 12th has been dedicated as “blog bomb” day for Fibro/CFS/Lyme/MCS and each participant is invited to do a short post describing their own story, and how illness has impacted on their ability to function in society.
What’s life with Fibromyalgia/Lyme/Chronic Illness like?
These days I’m become accustomed to being dismissed. From “Oh yeah, she has issues (cough cough) she can’t do that” to just being plan ignored and forgotten. I understand that I’m easily forgettable because I’m nice, quiet, and I disappear from the scene on a regular basis. Basically I’m no longer a “person” since I can’t fully function as one even though I’m extremely capable and I’m still have a brain. Heaven forbid someone ask me what I can and can’t do instead of making assumptions.
Today I want to remind the world that those of us with issues were once “people” too. I had a life and it was a good one. I had goals and dreams and hobbies and was full of energy and fun and then through no choice of my own I lost it all. Now I have physical limitations and my dreams are no longer what they once were, but I still deserve to be treated like a person, to be treated like I matter. I am not a doormat or an simple inconvenience, I am a person with feelings who exists whether it makes you uncomfortable or not.
Every day for me is a fight. I fight the pain to get out of bed when my alarm gets off. I fight the exhaustion while I get my kids ready for school. I fight my legs as I make dinner for my family. I fight overwhelming exhaustion as I go out with my friends. I fight isolation when no one understands. I fight my insecurities when I get asked over and over and over and over again why I don’t participate with friends when they do anything athletic, or anything that asks more of my carefully managed schedule. I fight the feelings of inadequacy when I hear all the things other people are doing and they ask me why I am not doing those things. I fight to maintain friendships when I know I’m not able to reciprocate as much as they or I like. I fight getting adequate treatment from doctors. I fight for basic medical care from the imbeciles who work at my doctors office who can’t follow my doctor’s instructions. I fight the pharmacy that thinks they know what I need better then my doctor does. I fight my insurance company for payment of all my bills. It never ends.
Most days I feel like chronic illness is just one big long lonely fight and only my obnoxious personality and stubbornness keeps me fighting it. Not everyone is obnoxious as I am, which is why being sick is so hard. And it is damn hard, and there are days when all I want is to be done with it all. Yet, I stay strong because I know that I am still a person even if no one else knows it.