ironic or what?

One of the more unique things about this illness is that it is constantly changing.  People ask me what Lyme Disease is like and my answer varies from day to day as do the symptoms.  I do see patterns, but not enough to keep me from guessing each day when I wake up, what kind of day it'll bring.  I like to wake up, thinking it's gone, I'm cured and that's it all over...my optimism, although well intended, does bring on a lot of heartache though.

Lyme is cyclic, so there are times when I actually feel quite a bit better and my very first thought,  is "I'm cured!"  I convince myself that this time it's for real, it's not coming back and to feel that former self emerge and get that glimpse of the real robin is so exciting, I don't want to let that go and so I put up quite the battle to succumb to a relapse.  But, inevitibly it comes back, and it comes back hard and crushes my hope for normalcy again.

After each remission, the symptoms change; one week its neurological problems, but the joint pain seems to lessen.  Other times, it feels like somebody is pounding spikes into all of my joints with a sledge hammer.  As painful as that is, the brain problems are worse....the panic attacks and outright fear....many days I am scared to leave my room, let alone my house.  The mere thought of even a trip to the grocery store  becomes terrifying.  On too many occasions, I have fled a nearly full shopping cart in tears due to hyperacussis, where I can hear every person in the store speaking all at once. I have become lost in the store,  like a child, unable to find the front exit or become confused and disoriented walking through the aisles when this intense vertigo drops me to my knees.

Some days, my mind may be clear, but the soles of my feet (from another infection called bartonella) are so sore, I am unable to walk. This week the fatigue is disabling....sleeping 18+ hours  a day.  I never could ever have anticipated that one day I could be like this...me, of all people....ready and willing to do just about anything...always up for an adventure.  Maybe that's why it's so hard for me.  Some people are naturally home bodies;  I wanted to lead tours in the amazon and photograph the world for National Geographic.

In conquering these diseases, I can only say these bacteria have met their match....I come from good stock as they say...my grandmother lived, and lived well until 102....and, I just learned I am related to William the Conqueror!  How's that you lousy little lyme spirochetes?!  The first immigrant in my family came over from England on a ship as the sole survivor, tied to the masts after it had floundered at sea, was rescued by a Spanish trading ship and dropped somewhere near the mouth of the Hudson.  Now, for the real kicker.....he met up with his father and together they founded a small little town in New England called Lyme CT!!!   Today, his grave and landmark remains in the private family cemetery in Lyme, which I recently visited and decided someday, hopefully many years from now, there will be a stone with my name on it, not far from his.