There are hundreds if not thousands of Lyme blogs. So why another one (from me)? Because I'm a writer. Because I have Lyme. Because I write. Because I can't not write.
I don't have any special medical certification, although at one point (or another) in my life, I've been daughter to handicapped parents, nurse's aide, naval air station pharmacy technician's girlfriend, mother, and neighbor of an emergency room head nurse. I've been sister-in-law to a nurse. But none of the aforementioned comes with a degree (although I do have a degree in writing). My now-grown but then-teenage son once asked me why I knew so much about medications. It was because of his youngest brother, I told him, who had had asthma as a baby. As soon as the doctor began trying him on various inhalers and steroids, I picked up a copy of a drug reference guide. Having one on hand served me well as a mother. It serves me well today.
But there is no single book for Lyme. When you enter the world of Lyme as a patient or a loved one of a patient, you are faced with three options: 1) jump into a world of convoluted craziness, trying to sort out who/what is correct on this hot-topic/much-debated/controversial (even sometimes-taboo if you insert the word "chronic" before "Lyme") subject; 2) stick your head in the sand and hope it will go away even though we know it won't; and, my suggestion, 3) trust one good Lyme-literate doctor, shore yourself up with the best support system you can muster, delve into Lyme information/resources s l o w l y (ever so slowly) so as not to overwhelm yourself (since brain fog is common in Lyme patients, we are overwhelmed and often frustrated enough by the time we are diagnosed).
The words "frustrated" and "overwhelmed" aren't even adequate terms in the world of the Lyme patient. Never-ending. Hopelessness. Exhaustion. (I know what it's like—thanks to Lyme—to feel as if I am going to die from exhaustion. Sometimes from a bit of physical exertion. Sometimes from a bit of mental exertion. Sometimes from getting out of bed.)
The word "unbearable" also comes to mind. Up until six-seven years ago, I was a do-it-all-er. I published a poetry journal (still do by the skin of my teeth and the support of a good Assistant Editor); attended and organized poetry events; went to college part-time; zipped 240 miles up and down Route 95 each week/every other week from Massachusetts (where my grown children live) to Maine (where we had moved) and vice-versa; hiked; snowshoed; cross-stitched—and often said, "Now what?". It is unbearable sometimes when I think of myself in those terms. The Cynthia That Was. Since moving to Maine, I have had three grandchildren. Of course, they are, like all grandchildren, the cutest children in the universe. They are blessings. They are miracles. But I can't zip down to see them. I can't drive (too fatigued/don't want to kill anyone). I (and this hurts the most) can't be more active in thier lives. I am the Grammie who Comes and Goes (not because I live in Maine, but because I'm too tired to visit longer than a few hours). Yes, Grammie does bring presents, and I'm sure they enjoy that. But I want to be the Grammie that zips down there in my Jeep and takes them out. For an ice cream. To the playground. Maybe surprise them with an unexpected visit! Perhaps babysit late into the evening hours so my sons and their wives can have a night out on the town. But I'm the one being put to bed early. And when I'm extremely tired, I'm the one who is having her food cut up for her in small pieces. I want Cynthia back and I want to be a Real Involved Grammie.
I will get me back and I will be the Grammie I envision. Even as I look out longingly at the snow falling softly this Sunday morning (longingly because I WANT TO BE OUT SNOWSHOEING IN IT), I have hope. Because I have the good Lyme-literate doctor I mentioned above. Because I have a husband who has not only supported me and taken over practically every single chore I used to be capable of doing, but has cut up my food in small pieces as mentioned above. Because I'm in charge of my Lyme recovery, because I'm taking it slow.
So I throw my hat in the Lyme-blog ring. For no other reason than to write it out. Write it away.
