vacation

I like vacations. I especially like unexpected vacations, like the one I was just on. I say “unexpected”, but I mean “forgot about”. This happens to me more than you’d think. To many people, being sick IS vacation. There is the luxury of staying home and taking care of yourself. I don’t know what this says about our society, that a “staycation” can be as desirable as a vacation, but I do know that being housebound because of illness is no vacation.

I don’t quite remember how this vacation came together, yet here I was, two days before departure, bitching to Katie about leaving. I am one of those people who feel compelled to leave a clean house and yard. I know, no surprise there. It’s more work up front, but always worth it on the return side. So I was running around the house, cleaning and weeding and watering and organizing, and not packing a single thing. Was this vacation worth it? Should I be leaving at all? What was I thinking back in March? Oh yeah, I had planned on being well.

The journey itself is enjoyable to me. Something about solo travel makes me feel competent and free. The whole flavor of travel has changed for the better since becoming single. My ex was an impatient, tense traveler. I’m chill to the point of sending my itinerary to my friends because I can never quite remember the particular details of dates and times (see first paragraph—it happens a LOT). Still, I get myself from point A to point B with little fuss and trouble.

Some people, myself included, struggle with the idea that sickness deserves a vacation. The answer is emphatically yes. Serious illness gives few breaks, and a respite punctuated with illness is better than no respite at all. Or, as my friend Paul has said, “I can be sick in Paradise or sick at home. I choose Paradise”. I knew that many people would think going on vacation would mean I was better. I am better, but I am not well. I knew I would have some bad days, perhaps during, but definitely afterward due to the stress of travel and fun. What I didn’t know was how worth it going on vacation was.

Something else went on vacation, too. My medication schedule. I can do that with Lyme. Each bug, borrelia, babesia, and bartonella, has intense defense mechanisms (biofilms,  cysts, and hiding in tissues where there is no blood flow, like eyeballs and joints and the brain), so the protocol is always changing. Most doctors pulse medications in monthly bursts, to constantly hit them with something different. That means I can, theoretically, miss a week or so of most medicines and not mess up my treatment.

Almost all Lyme literate doctors use both pharmaceuticals and herbs to treat Lyme. The pills are easy. I can take up to seven pills in one gulp, if they’re not huge. The herbs are different. I mix all the herbs in a glass, 15 drops at a time. Then I put in maybe an ounce of water and drink it. Katie watched this once and said, “That smells like some foul shit.” A note about some of the stuff I take: it is some foul shit. I don’t think about how it tastes. I just chug it. I’m still trying to figure out what in my life made me such a champion medicine taker and I’ve got nothing.

I always feel a little bit naughty that first day I don’t take my meds. The freedom from that tedium is immense, I can’t believe how easy it is to NOT take medicine. I have them with me, too tethered to the thought of needing them to leave them at home. Sometime in the afternoon of day two, as on most vacations, something loosens inside of me. I don’t care what’s going on in the world. I quit checking my phone and my computer lies idle. The medicine migrated to the bottom of my suitcase.

Isn’t that the whole purpose of vacation? A rejuvenation of mind, body and spirit? Too often we pursue vacations with a grim purpose to pack as much activity and fun into them as possible, leaving exhaustion and frustration in the wake. I much prefer my friends’ pace: puzzles, hammocks, a vague daily plan which may or may not involve an actual activity, games at night, and the freedom to do whatever you’d like.

I got myself home with little fuss, and a small bonus: dinner with another friend. I milked a few more hours of vacation, and returned home to Katie and the dogs. That might be the best part of vacations for me—the moment I walk in the door of my own home. The smell is deeply familiar and comforting, as my home smells like both my childhood and adulthood. The dogs greet me as if I’ve been gone forever. Katie bounds up the stairs and gives me a hug. “I missed you!” I’ll start retaking my medicine tomorrow. Tonight I will unpack before I let out that final exhale of vacation, before thoughts of tomorrow, with schedules and chores, creep in.

 

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doublechecking

I like to google the side effects of the drugs I take. I used to do this several times a day, mainly because I could never remember what they were from hour to hour. I do it a lot less now. A month ago, some not so good symptoms crept back (a whole other google rabbit hole). I went back to the doctor and I started taking liposomal artemisinin, a Chinese wormwood derivative that is effective against malaria, babesia, and Lyme (babesia is often a Lyme co-infection) The liposomal part is a fatty matrix that stabilizes the artemisinin part and helps the body absorb the artemisinin. I’m also taking a few more herbs. Cumanda, an anti-bacterial herb from the Campsiandra Angustifolia tree in the Amazon is one. Cumanda is for neuroborreliosis,  or “Lyme brain”. I’m also taking teasel root extract. That one is from Dypsacus Sylvestris, a biennial teasel plant. Teasel root extract is a cyst buster and biofilm remover. See why I had to google this shit several times a day?

I wondered which one of these herbs was causing my brain fog, liver pain, fatigue, itching, stomach problems and achy bones. As usual, there is no definitive answers. Could be the liposomal artemisinin. Some of the symptoms might be from teasel root. Others might be from cumanda. Why do I care? It doesn’t really matter, does it? Either way, I have to take them, or the alternatives, Flagyl or Mepron, or any of the pharmaceutical drugs I have also used. They have some of the same side effects, and some others that are worse.

One of the things I’ve noticed now that I am noticeably better is the herxes don’t get easier. They are not as bad as they were earlier, but again, does it matter? Sick is sick. These are mostly walking around doing things and crashing later in the day herxes, so shouldn’t I be thankful for that? I should be, but I’m not.

Oh, I forgot the last one I’m taking now, MC-Bar-2. That one is for bartonella and is a medley of herbs like Skullcap, Jamaican sarsaparilla, cordyceps, Pau d’Arco, White Willow and more. I started to read about each ingredient, but stopped after cordyceps, a fungi that the Chinese grow on caterpillars (and I’m drinking that shit? GROSS!). Also taking low-dose naloxone, the drug they use to reverse heroin overdoses. They caution me against taking any narcotic every time I refill that one, but I happily down the little white pill in hopes that it does, in fact, boost brain activity in inflamed brains like mine.

Sometimes I wonder why I keep taking all this stuff. Then Lyme comes creeping back. Once bugs get in your system, it’s hard to eradicate all of them. Once Lyme goes untreated for any length of time, no one knows if you are ever “cured”. Each bug has unique properties that make them hard to eradicate. Cysts, biofilms, protein-changing strategies, even immune modulators in tick saliva,  It’s as though the ticks and the pathogens they carry form an evil synergy  designed to fool the human immune system.

I am not making this stuff up. I wish I were sometimes. The Lyme community debates the validity of herbs vs pharmaceuticals, IV antibiotics, diet, and alternative therapies, like rifing (a highly controversial technique using electromagnetic waves, the patient holds a metal cylinder in each hand, rather like a jumpstart cable for car batteries). The herxes  I experience tell me that the herbs work, sometimes more effectively than the pharmaceuticals. Sometimes  I wonder if I’ll be on some form of maintenance herbs forever. That wouldn’t be too bad, except that the herbs taste foul. They have to be taken on an empty stomach, with a small amount of water. I look at the mixture as a tastebud wake-up call.

Why do I keep looking up both the disease and the cure? I think I have to double check to see if a) I have Lyme, and b) I am still sick with Lyme. There is a third option. I have the ridiculous theory that since I have Lyme, I will get no other diseases. The sheer lunacy of this insures that I double and triple check my symptoms, making sure that I only have Lyme. You can die from Lyme, but it is rare, if it is treated. I had to google Lyme fatality rates just now. They are low, but phrases like “drastically shortened lifespans” and “death from secondary infections” pop up too often for my taste.

There can be no other reasons than these. It’s fucked up that I still need affirmation that I do have Lyme. I don’t want it. Is that why I do it? Maybe this time I’ll see that all these symptoms are not Lyme! It’s something else, something easily cured with a few pills. And don’t you think I’d be okay with being sick by now? Apparently not. <sigh> Google will have to continue to be my support group, because I don’t particularly like support groups. It’s not that I don’t want to share information. It’s the few people who seem to use the forum as an opportunity to whine on and on about how sick they are.

Ooh, that was kind of mean. I’m sure they can’t help it, and really need the support. I like a different kind of support. I like it best when people treat me normally, teasing and harassing me as if everything is fine. It is, mostly. Except when it’s not. Then I google away, double and triple checking. Just in case.

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acceptance?

I fucking hate babesia. Babesia is one of my co-infections, a malaria-like parasite also called a “piroplasm”, whatever the fuck that is. It clouds my mind and saps my energy. I get angry and depressed for no reason. My eyes go wonky. All the normal boring crap, too, like fatigue and muscle aches and joint pain. For once, there is no anger at this flare-up. Am I being forced into accepting Lyme? Or am I worn down with fighting? I don’t think either is quite true. Acceptance, at least for me, smacks of giving up, worn down implies defeat. I’ll settle for the gentle euphemism of “learning to live” with Lyme.

My doctor shared his frustrations with his inability (another tricky word) to predict the outcomes of his Lyme patients. He felt I should be well by now. He wonders what factors we’re missing. So do I. We discuss my lifestyle. Am I drinking? Why, yes. I tried to drink twice in the last month. It didn’t work out too well the next few days. Alcohol is off the table once again. How about rest? My number one priority. I nap most days and get at least eight hours a night. I am like a four-year-old trying hard to give up naps but too sleepy to actually do it yet. What about stress? Yes, what about stress. Oh, you mean the stress of living? There is the stress of existing, which is essentially what I did for almost two years, and the stress of living. Existing is a sealed bubble of eating, sleeping, and being sick. Living is working, socializing, exercising, going out, traveling, and interacting with the world. YES IT IS STRESSFUL! I almost always feel behind the eight ball of my own life. Do one of the things and be sick. Do all of them and feel great. That uncertainty is stressful. So is deciding which one to prioritize on any given day.

I can accept that lifestyle choices and managing stress are all on me. My doctor accepts managing my protocol. What both of us struggle to accept is what we are missing. Was it the eleven surgeries I’ve had during my life? Perhaps all the antibiotics I took for acne in my late teens. The drugs I enthusiastically experimented with? Maybe something in the environment. It sure as hell isn’t my disposition. I’m fricking Pollyanna. We may never know for sure, and that in itself is a stressor.

Today marks the first day in weeks that my brain is working well. I had no idea how far down the slope I had gone. That’s the hallmark of Lyme brain (such a warm, fuzzy little description for losing your mind). It’s so subtle. I hope I can learn to recognize relapse symptoms more quickly. I don’t like the sensation of somnambulating through life. I may appear and act normal (well, as normal as normal is for me), but if you ask me to remember too much, or do something mentally challenging, like math, you’ll see the gaping holes in my speech, thought and memory.

I am ambivalent about this latest flare-up (relapse, setback, shitshow, whatever you want to call it). Overall, my symptoms are sputtering and losing steam. Either that or I am learning to live with my new normal. Is that acceptance, or is it defeat? I must confess I am satisfied with my current situation—lifeguarding, Airbnb, writing, exercising, and keeping the house together. I can control this amount of stress and chaos. I can adjust the intensity and frequency of all these activities when I need to, and I can push it, or I can take naps and rest. Of course this isn’t what I want. Like Veruca Salt I want it all and I want it now! I hate having limitations. Waaah! I know, cry me a river.

I guess acceptance means being content with the parameters of my illness. When I first typed this, I said “the illness”. I can scarcely admit even now, that it is MY illness, an illness that will be mine and belong to me until I die. This is just for now. I don’t want to be in this particular phase (which is basically the lifestyle of a five-year-old) forever. However, it is not merely existing anymore. It is a life, and not a bad one, either.

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