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. “
What I recorded that night is typical for me lately. Far better than it was at night 6-8 mos ago, same issues and sensations, just not as intense. There is so much more I want to add that explains what it’s like to be in this body and what it’s like to work through the mental challenges I now have thanks to big pharma. But I will have to make do with the fragmented thoughts as they come.
I recently had the chance to speak with several more people who have been “Floxed”. It felt great to relay the progress I have made and relay as much of the science and remedies I have learned as possible. I found it incredibly helpful for me as well as I was able to simply say the things that I go through. Even though only another “Floxed” person could truly understand what I was saying, the point is that I finally got to speak and be understood. All the symptoms and issues that I have a hard time describing were simply understood as they too are experiencing it.
Best of all, we got to speak about some of the mental challenges we now face. Levaquin (Avelox, Cipro and ALL Flouroquinolones) cause brain damage amongst many other major issues.