Humans of ME/CFS
Eight years ago, I became ill with mono at the age of 52. After six months of exhaustion, my doctor stated I had chronic fatigue syndrome. Six months after that I was told I have fibro. It developed into anxiety/depression. I missed so much work. I am an RN. I am out on disability as I was not able to work enough. We lost our home because we couldn't pay the mortgage. Our income is about a third of what I was making prior to becoming ill! I can't clean my apartment the way it should be, I can't cook the way I used to.
We have very little intimacy as I have no desire. I have sensitivity to lights, sound and some materials and scents. I also have IBS, I cry easily. I have trouble sleeping, which affects my awake time. This past winter I was in bed for over two months as my body crashed again, and I came down with bronchitis. And I could not fight it off. I also have COPD.
I am not the grandmother I want to be. I often don't want to see the babies or the older ones. I don't bake for them like I used to do, simple things. I have no desire. And don't let me forget the simple things like remembering to shut the stove off when I take the pots off. Or how to make a meal that I’ve made a thousand times. Or driving to the grocery store and forgetting where or how to get there. Very frightening. Or walking across the room and looking like I've been drinking alcohol all day, I wobble and lose my balance daily.
I get out daily in the summer time, the pain is much more manageable for me in the summer. The winter can be intolerable for me with the constant changes in the barometer. I also have trouble concentrating, if I am on the phone with someone, after a few minutes, it’s as though I don't hear them, I am blank. This makes me not speak on the phone. And I isolate. I feel like I am not a good friend or wife of mother to my family and friends. Most understand, but then they really don't. So to say my life has changed is an understatement. I miss myself, my job, my life...