Living with lyme

I admit that I am seriously ill and have been for years. Most of what I know about my illnesses are due to personal research and reading, because low income people especially, have such difficulty accessing quality affordable care that they are forced to work a lot harder for answers then a more affluent person.

I don't think any of my friends or acquaintances realize that I am seriously ill. And because fibromyalgia and lyme are largely invisible, unless you are living with the sick person, they are not likely to notice how sick I am.

 The fatigue is debilitating.   If I lived  in a healthy home where I culd regulate my sleep I'd fare much much better. The noise level in my building is too high for me to do anything but catnap. I lose my balance more frequently and suspect that I have significant nerve damage. I "pray" that I don't end up in a wheelchair. (I've no doubt that I qualify for a wheelchair, a walker, etc. as there are some days where I am too weak to walk.)

The list of lyme symptoms is exhaustive. My friend Mary Byrd Brown had lyme and she blogs about it on her website, www.marybyrdbrown.com. Years ago she recommended a lyme specialist to me in Annapolis. I haven't been yet because so many things need to be in place before I can access care.  I need a reliable car, good insurance or monies to pay out of pocket. Ironically since I haven't owned a car, I have more monies available for the occasional rental car, I am going to get out there to have my blood retested.

I am in almost 24/7 excruciating pain. Fibro. pain is described as diffuse musculoskeletal pain. The lyme means I feel like I have electricity runing thru my body 24/7. I have 24/7 pins and needles in my hands, arms, legs and feet, most movement is excruciating. I have numbness, tremors, jaw, teeth and eyeball pain, well I could go on and on with the list of bizarre sounding symptoms. Lyme and multiple chemical sensitivities symptoms are virtually identical to persons with Gulf War Syndrome. Lyme has also been closely compared to m.s. and m.s. patients are frequently mis-diagnosed. I will answer any questions that you have.

I have no choice but to work because I'll never have a good life on what social security gives me. And I can work as a counselor/life coach while sick. That's the one thing I know I excel at while sick. Plus, like most people I want to work and live my fullest potential. And obviously the higher one's income the more chances they have at physical, psychological and emotional recovery.

I do still have more than a glimmer of hope, even though my life circumstances by most scales would be considered inhumane.

Again, I welcome your comments and encourage them.