Sitting in bed with my cup of coffee every morning, I spend time focusing on myself. My thoughts inevitably turn to managing and living with chronic illness; how having multiple chronic diagnoses affects my ability to do the things I love to do.

This morning I came across a blog post that hits pretty close to home and is a topic that I think about frequently: I’m sick, but am I sick enough? (Find it here http://balancedandblissful.com/not-sick-enough-when-your-chronic-illness-leaves-you-halfway-between-sick-healthy/)

I was diagnosed with RA in 1995. I was majoring in music in college. Percussion. I was a junior when it hit and I was forced with answering a tough question. What now!? There were exactly zero majors that had enough coursework in common with music for me to make a sensible switch and I’d have to start from scratch. It was my junior year. My rheumatologist said that if I kept up what I was doing there was a very real chance that I could lose the use of my hands. You’ve all seen the images. 21 year old me put down the sticks. A decision I can still make tears out of.

But it was real. The pain and swelling and blood tests were all very real.

I went through many times of peace and in those times I ignored my diagnoses… With caution of course. I’d flare up now and again. I got used to the constant mild burning in my joints so I was careful not to make anything too angry. Except that I was angry. It was early on that I decided that I wasn’t going to let chronic illness define my fate. I lifted heavy weights in the gym to strengthen the muscles around my weak joints. I went to yoga for calming and stretching. I ran because I could. I’d still flare up. I’d still make my joints mad after an activity. But to me it was worth it. Because I didn’t let the disease defeat me.

I’m in a constant battle with myself. What can I do to be normal and what do I have to modify because I’m not?

The fibromyalgia diagnoses came in 2015 when my pain started to change. My soft tissues were feeling it now. Go ahead and read the list of typical symptoms. Go ahead, I’ll wait. That’s me. Always. I would tell myself that everyone feels like this and that I’m just too whiney and weak to deal with it. But no. People don’t feel like this. People don’t just sit there in pain all the time. They just don’t.

In 2016 a hip impingement was found in an x-ray. In 2017 lumbar stenosis was found in an MRI.

The second fibromyalgia diagnoses came in 2018. And I’m finally listening. It took ALL THAT to make me listen. Talk about stubborn. Now I wonder how much permanent damage I have either done or am currently doing to my back. It hurts more than anything else and hurts all the time.

The depression is hard. It comes from all of this. The sense of loss, the feelings of inadequacy, the struggle with fatigue, the brain fog, the pain, the research, the worry, the experimentation, the endless need to find a way to be normal, the feeling that no one understands what you are going through, the loneliness. It all piles up. It’s overwhelming. I’m sorry if I cry at you.