Posted on Dec 2, 2009 in Blog |

Today was the first time that I looked at my feet and felt as though they were somehow separate from my body. It’s a very strange sense. Each morning, in the shower, I turn the water a bit warmer and let it run on my feet for a few minutes to help them warm up a bit.

Peripheral neuropathy is a side effect of Lyme Disease (among other diseases). That’s a fancy term for less blood circulation in the hands and/or feet. I get the double winner; I have it in both sets of extremities; more so in my feet than my hands. Neuropathy presents as a burning sensation, prickling, numbness, or tingling, or even a combination. Mine is usually numbness. My feet are usually colder than the rest of my body and I don’t usually notice it.

This morning, I turned the spicket to quite a bit warmer and let it rain on my feet. I looked down and thought: hmmm . . . I can hardly feel that water. I’m looking at the water, looking at my feet. I run the water on my shoulder. Yep, it’s definitely warmer, almost stinging. I point the showerhead back at my feet; definitely a difference.

What does mean? Who the heck knows these days; I’m chuckling to myself. Each hour of each day (and unfortunately night) brings changes in my body. Some hours are almost pain free. Some hours are excruciating and have me crying out in pain. One hour can be nausea and diarrhea, and then I’m well enough to eat lunch. I can have pain in my back, which is where the pain is usually the worst; then I have a pain in my shoulder that was never there before. Lyme is the most ‘fluid’ illness I have ever experienced. So now, I don’t evaluate my days. I just focus on getting better.

But I can’t really feel my feet in the shower and that makes it a little hard to focus on anything else. I remember the physical therapist telling me, ‘With peripheral neuropathy, you need to be careful because it can become easier to scald yourself with burning water.’ That’s why I run the water on my shoulder first.

It isn’t a ‘Twilight Zone’ moment. It is a ‘my brain doesn’t seem to be matching my body’ moment. It is just plain weird; and a bit unnerving. But I have learned over the past three months that I will probably be unnerved even more often, so I need to take note of this, continue protecting myself, and go on with life as best I can.

It may not be like this tomorrow morning.  It may be ‘normal.’  But there is no sense in fretting over it.  In fact, I have actually been able to laugh about it a bit.  I have learned that if I don’t laugh, I might cry and I just can’t afford the time and energy it takes to be sad.

Yes, this disease is serious.  I do take it very seriously.  I heard from two friends today; one was told that five of her DNA bands tested positive for Lyme; but it was a “false positive.”  The doctor has no plan to treat her for Lyme or to run anymore tests.   She is calling a Lyme Literate Medical Doctor (LLMD) today.  Another friend has a history of 20 years with very typical Lyme disease symptoms.  And she has never once been tested for it.  After hearing my story, she is also calling an LLMD.

I can’t diagnose anyone; I can’t cure anyone.  I can listen to their story, I can tell mine, and I can share what I have learned so far on this journey.  I can share the burden that others carry on their bad days because they help me carry mine on my bad days.

So today, I couldn’t feel my feet.  It’s been noted.  But it’s not going to stop me from laughing and loving my life, one hour at a time.