Last Wednesday, I went for my first bike ride on my new bike. I got a brand new bike as a birthday present (thanks to Joe, Mom & Dad) as part of my goal to rebuild my health. And to have fun doing it.
The ride itself was rather short: 20 minutes then rest then 20 minutes back to the car. Joe and I rode on the levee adjacent to the Pajaro River as it heads towards Monterey Bay. Part of the path was paved. Part of it was dirt with some rocks. I had a good time. I didn’t get too winded, but I could feel the burn in my thighs. The bike (a Specialized Expedition Sport) allows me to sit upright, which makes my back happy. It also has shocks on the front suspension fork, making the ride less onerous on my wrists. I was pretty excited to go and I enjoyed myself immensely.
Since then, I’ve been pretty tired. I rested on Thursday and part of Friday. I went to SF to visit a friend on Saturday and see the Orchid Show, but I got wiped pretty quickly. Sunday was a day in bed (reading an awesome book, The Immortal Life of Henrietta Lacks). Today I’ve been pretty tired again. I think some of the fatigue was from the bike ride and some from the Lyme herx. (More on that below.)
The whole experience of purchasing then riding a bicycle has me pretty wigged out. There is part of me that feels like I’m cheating. Can a person disabled with Lyme Disease really ride a bicycle? It seems contradictory.
On the other hand, I am doing my best to move forward, to rebuild my body so that I can go back to having a life where I am able to be active on a daily basis. I don’t need to be well enough to work before I try to do outdoor activities. In fact, I think I need to do them in order to get well enough to work.
I get nervous. I think I’ll get so tired that I’ll make myself sick again. In fact, after riding, I was done for the day. And the next few days as well. I was a little tired before I started, but I wanted to be out in the sunshine and moving around. So I did it.
I guess there is some confusion in my brain about how to get well. I know that every doctor will tell me that I need to do whatever exercise I can manage, as often as I can manage. That’s the only way to rebuild my bones, my muscles and my cardiovascular system. At the same time, I think maybe I should be doing it as physical therapy under the guidance of a professional. Only, that didn’t help when I tried it. Plus it’s expensive and boring. So I come back to finding ways to be outside, going for walks when I feel up to it. Eventually, when this round of fatigue lets up, I’d like to go back to the gym to build the bones around my joints. I occasionally enjoy doing yoga. Movement is good, even if I can only manage it once a week.
I somehow feel like I’m tempting fate…that I’ll injure myself or otherwise screw up my body in a new way. I still don’t trust it. It still breaks down all the time. But I’ve got my eyes trained on moving through this part of my illness and heading towards the life I want.
Last week, in addition to biking, I attempted to coil three times a day for Bartonella. Three full body scans. It was agonizing. I could tell my body was resisting because the toxin build up has been unpleasant. By Friday, I decided I had to go back to twice a day for a few days.
Every time I head to the coil machine, I hear an old Dunkin’ Donuts commercial in my mind: Time to make the donuts. I feel like I’m doing it way more than 40 minutes three times a day.
The Bartonella herx build up has had several major effects. First is irritable bowels – constipation, having to go multiple times a day, urgent bowels, loose stools (repeat from beginning). My abdomen got large and swollen. I’ve had explosive, stinky gas. The constipation gave way to loose stools on Sunday. What a relief! Then today, we’re back to constipation and cramps.
Next is the nerve pain. It is primarily on my left side this time around. I get burning sensations in my foot and calf. I get tingling in different parts of my left leg. I get numbness in my left arm. The left side of my face hurts. My left leg has also been itchy. I’ve had pain near the left hip bursa that eventually shoots down my leg. The nerve stuff is so distracting.
I’ve been overly emotional and wanting to be alone. I just want to rest or sleep or read because interacting with people is making me want to cry for no reason.
I’ve been clumsy. I drop things. I’m typing the wrong letters when I try to blog or email. I push the wrong buttons on my phone or on the timer when I coil. I lose track of what I’m carrying or where I’m going in the house. I have to put a lot of effort into focusing on what I’m doing otherwise it all goes awry.
My bladder has been acting up. First it won’t empty when I can feel it’s full. The next day I have to urinate every 45 minutes. I’ve also had pain in my lower abdomen, though I don’t know which system is causing it.
Finally, my ear canals hurt. The right one is redder than the left, but it isn’t clearly inflamed. This drives me nuts. The muscles at the base of my neck are tight. It feels like that is somehow connected to the ear pain.
The fatigue of the past several days has been worrying me. I started to suspect a Babesia recurrence, but when I coiled for it, nothing happened, no improvement, no herx, no increase in symptoms.
Next I thought I screwed up with the bike. But that doesn’t seem to be it. The fatigue from exercise shouldn’t last quite this long.
Then I remembered the Lyme Herx Sequence. It explained both my recent inability to warm up and the unrelenting fatigue. My hands and feet are perpetually cold. Yesterday my finger nails turned blue. Then this fatigue has had me down for almost 5 days. I’ve been coiling for Lyme pretty frequently, about every 5 days. I think the toxins are building up. I think they are in multiple systems of my body all at once. I coil way more than I did when I figured out the different aspects of the Lyme Herx Sequence.
So I’m doing my best to detox as much as I can manage in this state of Lyme and Bartonella herxes, even though I just want to stay in bed. Juicing is more than I can manage, but I’m eating large salads more often. I’m drinking lots of water. I’m spending time on the biomat. I’m resting a bunch. I’m taking silymarin and renavive and lots of antioxidants. I’m in the hard part of all this.
The bright spot is that I know that one morning (hopefully this week) I’ll wake up with energy again, like nothing happened.