I am very aware of mitochondrial disease every day. You wake up and take inventory, seems that your body boundaries are defined by pain. You long for socializing, but fear that catching whatever is going around may give you a permanent setback. Often the effort of getting somewhere is so tiring it prevents you enjoying the activity once there. Even with it being over 10 years since diagnosis, you continually discover yet another thing that depends on functioning mitochondria. It is scary stuff too — like cancer, mental illness, dementia, inflammatory disease, deafness, blindness, kidney failure, diabetes, etc. Every time you seek medical treatment you fear that a well-meaning physician may unwittingly prescribe something that causes dreadful side-effects in mito patients. Even something so simple as lighting a candle is an issue — part of my symptoms seem to be sensitivity to fumes including those from burning paraffin (wax) candles.
And then there is the long history of bad encounters with private health insurance that are typical of patients with chronic disease. These are scary times in USA.
I have pretty much gotten through the stages of mourning the person I thought I was before I got ill. It is still hard to write this.
