This is a good representation of my current nighttime baseline. I think I should start posting these from time to time. It would be a good way for me to look back at my progress.
Like many of you other "floxies" know, the intensity can vary. Some days (or months) are better than others so this can change for the worse very quickly. When I do have improvements, it's very gradual. Even just returning to previous baseline takes months after I've pushed too hard or got sick (or stressed, angry, etc). Not an all-inclusive description, but here is a brief note on where I am now.
Below is a transcript of a recording I made on the 14th of this month.
“Its about 9:30 PM, and I wanted to try and record what some
of my typical days or nights are like. Right now, as usual I’m very… I’m just
short of breath. And my breathing is very shallow. And like my Nurse pointed
out, I don’t seem to breathe too often. And when I do I have a very hard time
getting a full breath. And it feels like
there is that closing in my throat that I went to Dr. Li about a few months
after this started – 4.5 years ago.
My heart rate is up. My heart doesn’t hurt like it used to. That
hasn’t happened since about April or so of 2012. My heart is definitely tired
and it does strain, it just doesn’t hurt.
My body is incredibly heavy, and tingly. I have a burning
sensation all over my body, including my face. My muscles feel tight. Very very
tight. Even to the touch, my leg muscles are extremely tight. And they’re very
painful. As are my joints. My hips especially. But my knees have started
hurting again. And my body just feels tired. Like I had a workout where I went
past muscle failure. My body just sort of shakes.
My eyeballs feel numb, but they also hurt. They sting. My mouth
is so dry. Very dry. My nose and my eyes are very dry. So much so that it
hurts. And its not the humidity in Colorado, it’s been like that ever since it
started and Chicago is a very humid place.
Feels almost like an electrical pain running through my
body. And everything feels slow when that happens. My thinking gets slower. My eyes,
they are a little blurrier than usual. They seem to strain as I hit the wall.
Saying I’m tired isn’t the word. This is so far past tired.
I’m just heavy. My chest is heavy. It’s tight. All my muscles feel tight. Even my
biceps. Noticing my hands feel tight… and I’m starting to slow down a whole
lot.
This is generally an improvement. Until about June of 2012,
it was always far worse than
this. The way I feel now is how a single good day would have been back then. It’s
just my body is so weak. I’ve become so weak I’ve lost so much muscle. I’m at
137lbs now. And while I’m experiencing some improvements with the intensity of
the symptoms, I can do far less because my body is so weak. It’s just really
taken it’s toll on me. But I fight every
day. Every day I fight. “