A couple weeks ago, I traveled to Washington for an appointment at JSC. It was my third time visiting D.C., and I noticed the stark difference since my first and even second appointment there. This time around, I had the energy to take a cab ride all around the city. I was able to get a decent look at the Capital building, along with the Lincoln Memorial, White House, and other prominent historical landmarks. D.C. is truly a beautiful city! To Chicagoans the weather seemed quite mild, but to the locals it was really cold. I could tell, because I actually saw a group of politicians with their hands in their own pockets! Imagine that.
The appointment itself went better than I could have hoped. In the months leading up to it, I had been highly reactive to the antibiotics, a sign that my immune system was taking on more of the infection load. The overall conclusion was that I needed more breaks from the antibiotics to give my body time to recover. So this third round, which I started a couple weeks ago, consists of the same antibiotics but a much more tolerable schedule. For every two weeks on, I get a week off. If I continue to see progressive improvement, I will get more and more time off antibiotics. Truthfully, I am super excited about this antibiotic regimen, because I think it will lead to significant progress over the next few months.
As my mom and I were leaving the appointment, we had the pleasure of bumping into a family from southwest Ireland. The Irish man, like me, had Lyme and was a patient at JSC. He was tall, skinny, and exploding with life. He came over and introduced himself. He had been sick and misdiagnosed for nine years, and the last year he couldn’t even leave his bed! Then he moved to Washington to be treated at JSC. After a year or so of heavy IV antibiotic therapy, he was cured (or in remission). His 8-year-old daughter was there, visiting the U.S. for the first time. He told us with a heavy smile that it was the first time she had seen her father healthy. Before he got sick, he played professional soccer in Ireland for thirteen years. It is horrible what he had to go though, but I saw in his eyes that he had been reborn. As he left, I heard him singing down the hallway!
As for myself, in the last few months, my physical progress has temporarily plateaued, but only due to a pair of unforeseen setbacks. The first was a severe reaction I had while on the antibiotics. I regressed dramatically overnight with many old symptoms returning. It was scary, but luckily after two weeks, I regained most of my progress. Then, a couple weeks later, I caught the flu. Well, more accurately, the flu caught me – I didn’t have much choice in the matter. It took an additional three weeks to recover from that. Then it was time to start preparing for my appointment in D.C., which, as you can imagine, also took a lot out of me. Two steps forward, one step back – that’s seems to be the theme.
So my physical progress has been more or less stagnant, but my cognition has been trending upwards. Looking back over the last six or eight months, it is remarkable how much faster my brain is able to process information. Unfortunately, I am unable to sustain a high level of cognitive function for very long. It is mostly short bursts, and I try to use that time wisely – interacting with others and reading. I have actually finished my first book since the crash and went on to read two more! All of which are roughly 250 pages. Though I had been reading them for several months, it’s still a huge milestone, considering a little over a year ago I could hardly read anything at all.
Another thing I couldn’t do before, but am finding to be very pleasurable, is listening to music. I just curl up with a good playlist or album and try to drift away to another world, shedding my problems on the way. Believe it or not, I have been listening to a lot of classical music. It is definitely an acquired taste. The more you listen, the more you like it – then the more you like it, the more you listen. It’s a vicious cycle. I got into it because I can’t listen to songs with a lot of singing/lyrics for very long. At a certain point it overwhelms my brain. However with classical, my mind can drift back and forth between the music and my thoughts. It is sort of therapeutic.
Outside of antibiotics, I am working at every level to optimize my overall health. It is crucial that I support and strengthen my mind and body, because antibiotics alone aren’t going to get me to the finish line. I must continue to address a variety of factors, the main ones being: diet, nutrition, vitamins and supplements, detoxification, fitness, stress reduction, cognitive behavioral therapy, my environment, pharmaceuticals, immune support, and of course soul support. I work hard on all of these areas to speed my recovery time. Take my diet, for example. For the past few months, I have been able to maintain a stable diet – hay and oats three times a day. I believe all of this effort will – neigh, is – making a huge difference in my recovery.
Since I am unable to work or take classes yet, I try to find ways to contribute. Usually it is just finding ways to save money, like conserving electricity, heat, and water. I found the best way to save water is to dilute it. Sometimes I dilute it so much it barely tastes like water anymore! I also brew my own fermented tea (Kombucha), which is otherwise a super expensive health drink. I cut my own hair, which occasionally turns out badly. Correction: always turns out badly (I’d like to think I’m improving). Besides saving money, I worked to create a website for my dad’s business. And hopefully soon I’ll be driving my mom’s old car. That would open a whole new realm of possibilities – picking up prescriptions, driving myself to therapy, or just heading to the local pub for some virgin cocktails.
I know I said I would make a post about my struggles and the overall hardship of fighting “chronic Lyme disease”, but I am going to have to break my promise. I wrote a lot on this topic, but somewhere along the line, I realized I couldn’t bring myself to share it. Personally, I believe it’s because the truth is too dark and painful, and I don’t want to hurt anyone. Also, it would probably be in my best interest to keep what limited focus I have on more positive things. But it could be because I don’t want to draw any more attention to myself in the form of sympathy, or maybe, on a more superficial level, I know it doesn’t jive with my desired persona. Realistically, it is probably a combination of all of those and more. When I feel like the light has begun to outshine the dark, I will revisit my apprehension. Until then…
Why are there always fences around cemeteries?
Because people are dying to get in.
“Health is merely the slowest possible rate at which one can die.” – Samuel Johnson