This weekend I celebrated my first wedding anniversary. I felt lucky. I felt lucky all week as I contemplated what a great year I’ve spent with Joe, that Joe and I found each other, and that my life is going much better since I started using the coil machine.
In the years before I knew I was sick, I had a wonderful life. I had friends I loved. I spent time with my family, both the people I was born with and the people I picked up along the way. I worked for a social justice organization and saw real changes, positive changes to the world, as a result of my work. (I even got quoted in the New York Times for a research report I wrote for my organization.) I had a passion for my work. I had a passion for my life.
When everything started to go haywire, I had a certain kind of reserve that came from living life fully. The big thing I couldn’t figure out was finding a partner to share my life with. Now, despite the years of focusing on my health and slowing down everything else in my life, I have found a partner I love and have a more solid foundation for whatever I chose to do next.
In the time before Joe, I used to worry about how on earth I could make my life work out and still have time and energy to share with a partner. I used to come up with all sorts of scenarios that didn’t seem quite right and all sorts of compromises I would be forced to make. It wasn’t a pretty picture I had in my mind.
The funny thing is that it was these debilitating tick-borne infections that required me to make compromises and generated unpleasant scenarios I had to deal with. That was my reality. Over time, I figured out how to re-prioritize my life so that my expectations got closer to what I can actually handle. Having figured out what I really want in my life made it much easier to fall in love without all the other nonsense from my imagination getting in the way. It also makes me realize that the forced compromises and negative scenarios were misplaced.
These tick-borne infections are still eating at me. I’m doing better than I have in the past six and a half years. I have days when I can be very active. I have occasional weeks when I am well. Yet I still have days like today when I’m sort of okay, not in too much pain, but very tired and having a hard time focusing.
On the good days, I sometimes feel like I should have a job. On the bad days, I panic about what I can reasonably do. Yesterday I realized that the same pattern of thinking that I used to apply to relationships has now taken over my view of getting a job again. When I catch myself, I recognize that the reason it seems so agonizing to imagine working is that I am still not quite well. I still have a hard time fulfilling commitments. I still have to gear myself up (usually by resting) to have the fun or active days, which are then followed by a week or more of recovery time. I’ve prioritized being active when I can because it is part of building up my strength and my bones. But it makes it tricky to do much else.
So I’ve been telling myself for the past few days that when I am well enough, I will find myself doing exactly what I need to in the way of work. It won’t seem so onerous to think about. It will be obvious what I will be able to do and what I’ll want to do.
Over the past week and a half, I’m having Bartonella symptoms on and off again. I’ve had night sweats a few nights, which simmered down to night heats. Night heats are my new term for when I wake up roasting but not sweaty. It usually involves getting out of bed to cool off, then going to the bathroom to make it easier to fall back asleep.
I haven’t been keeping good enough records lately to put an exact number on it, but it seems that I have two or three good nights of sleep followed by three or four nights of partial insomnia. The insomnia consists of waking up multiple times with vivid dreams, then taking a long time to fall back asleep. Sometimes I doze lightly, somewhat aware of my surroundings, but not quite asleep. After a night of insomnia, I sleep in until 9am or so, which translates to 10-11 hours in bed at night.
I’ve been having lots of peripheral nerve irritation. One morning, my arms were asleep. Another morning, I had pain in my ulnar nerve, from shoulder to fingers, on both arms. When I’m sitting, one foot will fall asleep or I get tingling between my toes or just above my ankle on the inside of my leg. These things come and go, but they are more frequent and more intense on the days following the nights of poor sleep.
My intestines continue to show the symptoms of irritable bowel syndrome, urgent and mushy stools for a day or two followed by constipation and gas for a few days. Then repeat. I’m still getting occasional heartburn, mostly after breakfast, but it has lessened as the weeks go by.
On the good side, the pain in my feet and heels disappeared last Friday. And I’m no longer getting pain in my hands and feet upon waking up. The headaches are milder and less frequent; I sometimes go a whole day without one.
I’ve continued to coil two or three times a day for Bartonella. I suspect that these symptoms will keep coming and going as I whittle down the infection.
I coiled for Lyme yesterday after five days off. I’m having a mild herx today. It is primarily fatigue, difficulty concentrating and low blood pressure. My joints are acting up a little, mild aches, but not extreme pain.
I’ve stopped taking probiotic pills while I’m at home. (I will still take them if I’m on the road.) For now, I’m continuing to eat probiotic foods, including cultured cabbage every day, and kombucha or yogurt on most days.
I’ve also reduced the amount of alpha lipoic acid from 200mg per day to 100mg per day. Little by little, I’m trying to get rid of the supplements that might be keeping the infections in check, so they can get active and get killed.