One of the worst things about Lyme – I know I say that a lot, because sometimes every thing feels like the worst thing – but, really this seems to be one of the most horrible parts of the disease. I never know what a day will bring. I have no idea from one week to the next how my health will be. Making plans is stressful because, even if I’m having a pretty good week, next week may not be that way.
This summer, I started anti-malaria drugs in addition to my antibiotics and had some great results. I felt better than I had in years. Everyday seemed like a gift. I was able to be fully present in my life again. That felt amazing. I was getting glimpses of the woman I used to be and I was so excited that I had finally found a combo of drugs that was making a difference. For the first time since starting my treatment journey, I was having successful results!
Then a few weeks ago, I woke up with a migraine reminiscent of the ones I used to have when I couldn’t move or walk because of the intense pain. This was also the day I was scheduled to leave on a girls retreat road trip four hours out-of-town. I didn’t think I would make it. But the difference between the me before antibiotics/antimalarials and the difference of me two years ago when I had no diagnosis or treatment was that I went anyway. I rested and “medicated” and by the late afternoon, I was feeling better. I had a fantastic weekend with friends and I was able to keep up, for the most part.
Two years ago, I wouldn’t have been able to get out of bed, no matter how much I wanted to, or how hard I pushed myself. It just would not have happened. What I wish I could explain to others is the distinction between just being tired and being fatigued from disease. It is a vast difference. It is not even the tired you have when you have the flu. It is beyond anything I can explain. The only way I know how to explain it is you are completely incapacitated, can’t lift your head off the pillow. There is a heaviness that sits on your bones keeping you immobile and lethargic. I simply physically could not do the things I loved to do, nor could I generate any energy to do them.
Now, though I have more energy, I still have days where I can’t do as much as I would like. This is where the frustration comes in. It’s emotionally draining and I will break down in tears because “yesterday” was pain-free and wonderful but “today” feels like I’m fighting for my life again. It seems like a cruel joke to have glimpses of health, just to have them ripped away over and over and over.
It’s the nature of the disease. Sometimes it’s herxing* or it might be the bacteria moving into different areas of the body and causing different symptoms. Either way, it’s an awful roller-coaster ride and I want to jump off. This week has been slow and I’m exhausted. I’ve had some excruciating joint pain that had me writhing in pain. This was after days of not having any pain. While I’m thankful for the new-found combo of meds that are helping, this back and forth is getting old. Will I ever fully recover? When will I see remission? LLMD’s say that it’s an underlying rule that you must take one month of long-term antibiotics for every year you were infected with the Tick-Borne Disease before you will start seeing long-term results. My problem is that I don’t even know how many years this bacteria has been in my body. It could have been 30 years and that is a fear that looms in the background of my daily life.
Regardless of the crazy roller-coaster, it has been amazing to be able to participate in life again. I went shopping and had lunch with a friend last week and the very next day was able to get up and get going for another busy day. Getting up in the morning and getting ready for the day without having to take breaks or naps in between, hasn’t happened in YEARS. It may seem like a minor thing to most people to be able to get up and get ready for the day, but these are huge baby steps for me. I see my life peeking through the haze and I am so eager to reach out and grasp it with both hands. I am ready to live a life without pain and debilitating fatigue. In the meantime, I wait for the roller coaster to come to a complete stop, so that I can enjoy the good days, without fear of the future.
*Jarisch-Herxheimer Reaction: It resembles bacterial sepsis and can occur after initiation of antibacterials, such as penicillin or tetracycline, for the treatment of louse-borne relapsing fever and in tick-borne relapsing fever. An association has been found between the release of heat-stable proteins from spirochetes and the reaction. Typically, the death of these bacteria and the associated release of endotoxins or lipoproteins occurs faster than the body can remove the substances. It usually manifests within a few hours of the first dose of antibiotic as fever, chills, rigor, hypotension, headache, tachycardia, hyperventilation, vasodilation with flushing, myalgia (muscle pain), exacerbation of skin lesions and anxiety. The intensity of the reaction indicates the severity of inflammation.