I have this image of myself as being transparent [not in the Netflix movie “Trans-parent” definition]. This disease is helping me find out that I am much more hidden than I would like.
When I had Lyme disease it was a specific diagnosis with a specific, though terrible, therapy. After 30 years of suffering with Lyme, it was finally properly diagnosed and treated. It left me with many lingering problems some of which maybe created my current disease.
The “maybe” is my problem. We know I have some current severe disease, but the doctors can’t agree, yet, on a diagnosis. This creates a situation where I don’t even know how to talk about this with myself. So I don’t talk about it with others.
This makes me significantly less than transparent talking about one of the major factors in my current life. When friends and family ask me how I’m doing, I answer vaguely. Typical responses from me are “Moderate,” or if I’m doing slightly better “Okay” or “So-so.”
My self-image says that I should be letting people in on how difficult this disease is for me, in a way that doesn’t ask for sympathy, just understanding. I don’t know how to do this, my only idea so far has been this blog (actually it was my wife’s idea).
She and I have developed a system that helps communicate what’s going on with me. There are three scales:
- Nausea – “None,” “moderate,” and “I can’t even think about food.”
- Pain – On a scale of 0 to 10, zero being no pain and 10 is passing out from pain.
- Life force – On a scale from 0 to 10, zero being “I’m dying now,” to 10 “I’m strong and vital.”
This allows me to share with her some how I’m doing without my having to be fully involved with the ills of my body. The issue of being fully involved in my body is that a) it takes a lot of time to inventory my various parts, and b) that fully noticing the pain, nausea, lack of air, etc. is really not fun.
Most of my time I spend slightly removed from my body. I know many reasons why this adaptation is not ideal, but it allows me to keep going while still really enjoying life.
I hope this post helps you understand how I’m doing, and in the bigger context helps you empathize more with yourself and others who are suffering.