(Not so) Easy Come, (Way too) Easy Go

Since my last update, I have been feeling significantly better. I didn’t check in here about it, partly out of fear of jinxing my improvement, partly because I was too busy living my life like a (nearly) regular person, and partly because I didn’t believe it was really happening. But it did happen! I felt SO MUCH BETTER than I have in many months, and for longer stretches than I have since I first became very sick in September 2014. I went several consecutive days without needing naps. I went on a wild rampage unpacking and decorating our new apartment. It was all very exciting.

During this time, I was continuing oral antibiotics, and my weekly IV infusions, which I started to DRIVE MYSELF TO.

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CAPS NECESSARY. I DROVE MYSELF.

Yesterday, I woke up and felt the shift immediately.

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Raised aching ankle, wrapped aching wrist, inspirational socks

I tried denial, but it wasn’t far into the day before I had to face the reality that my great stretch was over. I have written before about the disconnect between Good and Bad days, living with Lyme. It never gets any less surreal. It’s like whiplash. Or Invasion of the (Healthy) Body Snatchers.

January 2015, I first met my Lyme doctor. It is now November 2015. It took 10 months of treatment, herxheimer reactions, the roller coaster of good and bad days, flaring symptoms, new symptoms, more needles than I care to think about, patience, frustration – 10 long months before I got a real taste of feeling like myself again. It took 10 months for me to feel real hope.

I would be lying if I said I didn’t feel that hopelessness creep back in today, as I sat on the couch with my aching joints and only enough energy to change the tv channel. There are no guarantees with Lyme. There is no known cure. There is no real test to find out definitively if/when you are truly Better, with a capital B. Some people recover fully, and their Lyme story ends. Some continue to struggle with relapses indefinitely.

My antibiotic treatment is ending. It’s been aggressive and thorough, with courses of several antibiotics, each aimed at attacking Lyme from different angles, at attacking the bacteria in all its forms, over the course of several months. It has been exhausting, and very, very expensive. It’s time to step back, and give my body a break.

I will continue vitamins, and some of my supportive supplements. Probiotics continue to be essential, as all of this medication has done a number on my gut. I am hoping to continue to improve and maintain Good stretches without regular IV infusions, so that I can get into a rhythm that doesn’t include frequent doctor visits, and so that our bank account can begin to recover (infusions are not covered by insurance).

It is important to note here, that I am still very fortunate. Much of my care was covered by insurance. While the journey to my Lyme doctor’s office was very inconvenient before we moved this fall, it was not prohibitive. I did not have to travel out of state, I did not have to fly. I have the support of my friends and family, and if I can continue to feel as well as I did for those few magic weeks from October into November for any extended period of time, then I am luckier than many others who continue to suffer with this disease.

Hopefully, in a few days I will be feeling better again. And hopefully, I will hold onto that feeling.

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