If you suffer from chronic illness, you’ll know the struggle of deciding whether or not or how much to share of your health journey. Chronic illness is something that cannot be understood fully unless the other person also has experience with a chronic condition. But family, friends, and strangers will always overwhelm you with questions of “how are you?” and mistake your “good days” for signs that you are getting better.
I’ll be completely honest, I didn’t feel much desire to hit publish on this post. But as I said in part one of this life update, I always want to respond with courtesy and appreciation for those of you who have been asking after my health and praying for me. And if there is one person out there who can find comfort in knowing someone understands what they are going through, my constant prayer is that I can be a help to that one. So, here’s a summary of what’s been happening since last summer.
If you follow me on Instagram you’ll have a better idea of what’s been going on, but the last time I posted a health update here was back in June, before I even started treatment. I had just been diagnosed with Bartonella, an infection that attacks the red blood cells.
Since then, I have also been diagnosed with Babesia, another infection that attacks red blood cells; I don’t have testing to prove this as it is very expensive and doesn’t always come back positive, but my symptoms match up and have gotten worse as I’ve started treatment, a sure sign that the infection is present in my body. With Babesia often comes Lyme disease, of which I have a few symptoms but have not been diagnosed with yet. We still don’t know (and will never know) how I caught these infections; some symptoms have been present since I was four years old, but both can be spread by ticks or in utero.
You can find a list of my old symptoms here. I still experience every one of those symptoms, but some have lessened. For instance, I still feel feverish on a daily basis, but I rarely run a higher fever anymore; my joint pain is usually manageable unless I’m in a herx flare; body temperature regulation issues aren’t as severe (last summer I wore sweaters all through the season, I’m hoping it will be different this year); cold and numb sensations aren’t nearly as frequent; I still don’t have as much weight on as I’d like, but I no longer feel like a gust of wind could blow me over; foot pain still happens, but no longer on a daily or even weekly basis — it will instead happen randomly, usually when I’m getting ready to herx, and doesn’t last as long.
What is still happening is a frequent feeling of having the flu, strong fatigue, horrible headaches and migraines, nausea, insomnia, stiff neck, dizziness and a disturbing sensation of “floating”, brain fog, sore throat, brain inflammation, and air hunger. I don’t necessarily rely on my cane near as much anymore but still bring it with me wherever I go as I’ve found it’s a great preventative measure for my fatigue and joint pain.
Finding the right treatment has been my biggest challenge. In August 2019, my body responded poorly after beginning my first round of antibiotics, the usual course of treatment, and I was hospitalized for nearly a week. It was one of the most traumatic experiences of my life. We switched to an herbal supplement regimen instead, which brought improvement in October — that was the last month I felt consistently okay and was able to get out on a regular basis.
By November-December, I was down for the count again. Babesia was then diagnosed and I tried a few different medicines and supplements, including an anti-malarial medication, but ultimately I just felt worse and worse. In April 2020 my LLNP finally switched me over to an entirely new herbal regimen that is addressing detox for brain inflammation, nervous system and mold, Bartonella, and Babesia.
While most days I’m still in bed, can’t do much for more than an hour, and don’t feel strong enough to go out for a short walk, lately I have had a few days in which my mind feels clear, my motivation has returned, and I haven’t felt really flu-ish. These little improvements are a good sign that the new meds are starting to do what they should.
And then, of course, there is Covid-19. So many of my weekly symptoms mimic the beginning stages of this virus, and due to the new process of detoxing of brain inflammation (which causes anxiety among other mental issues) I’ve struggled with PTSD and panic. The underlying fear of catching a virus I’m not sure my body can handle has been stressful. I try to remind myself daily that I am okay, my physical reactions are normal to my treatments, and God is in control.
The other major challenge is my mental health. Not only are my preexisting mental conditions exacerbated by the infections, but being brought low physically and unable to live life the way I wish to as a young woman takes its toll.
I often wonder if I will ever be healthy. I’m caught in a cycle of taking one half step forward and ten steps backward. I think often of the time I wasted before I fell ill; I struggled with fatigue and PTSD from my brain injury and probably dealt with milder forms of these symptoms from the infections, but I was capable of so much more than I realized. Unfortunately, it seems my life needed to come to a halt for me to recognize this.
I stopped living for a long time in order to live. My sole focus for almost a year now has been coping with my new life. But I know what I need to do is figure out what I can do now to help me for when I am better in the future. All the things I said I would never do, could never have, would never want, are now my sole desire, simplified and made stronger — my own financial security, my own home, my own family. My passion for these things has grown and I can only hope that along with my physical strength, God will strengthen my mental self to pursue and create these things bravely for the time my physical and mental health are finally balanced together for the better.
Not every day is positive. Not every day is full of gratitude. There is no break from any of this right now. But I cannot say no to hope or I will be swallowed by the lost and helpless feelings. So for now I am working on believing that I will have a healthier and more stable life someday. And that’s all I can do.