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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rebellion

Getting completely well is harder than I thought. I am so close to the end yet farther away than ever. This is where I should get some kind of power surge, both mental and physical. I am sputtering. No surges here. Instead, my head and body seem united in a small rebellion. Anyone who knows me well has seen how hard I work at getting better. Clean eating (and by clean, I mean no gluten, dairy, sugar, processed food or caffeine. Go on, try it. I dare you), early bedtimes, naps, gentle exercise, mindfulness, and strict adherence to taking my medications. I’d give myself an A+ in this, until now. Now I find myself skipping my medications. I ate dairy the other day. It did not go well. I had half a drink on a date, and it was delicious (it was also a great date. I want to see him again, see if the chemistry holds, but Trump fucked that all up). The alcohol didn’t affect me as much as I thought it would, but I had maybe half a shot of a Rusty Nail. God, I love a good Rusty Nail on a cold winter’s night. I eat too much or too little. I eat chips for lunch sometimes.

Maybe this is to be expected, a more realistic path than the monastic life I have led for the past two years. Maybe I am frustrated, and tell myself “what the fuck, it doesn’t matter. After all I’ve done, I’m still sick.” This is a dangerous time for me. I have to be able to see the light at the end, and it’s not there. Why is healing so hard? Why does Lyme have to be so goddamned hard? 90% is no better than 50% for living a life. In some ways it’s worse, because you get a glimpse of a normal life again, but can’t quite do it. In a sick way (sorry, bad pun alert!), nodding off on the sofa was preferable, because I had no choice in the matter.

How did I handle this in the past? If I look back, I always hit this stage at some point post-surgery. After my ACL replacement, I hit rock bottom around three weeks after. My ex, an old hand at taking care of me after surgery, knew my pattern well. He brought me a dozen oysters and a bottle of Pouilly Fuisse (or fussy pussy, as it was known in our house). It helped tremendously. Lyme is different. I get a string of days where I think this is really it, this is the end. I’m going to feel great. Then I don’t, and I don’t know why. This turned into a bit of a whiny rant, hasn’t it? I don’t care. And that is at the heart of my rebellion. I think I am mentally tired of being positive. I also think the political turmoil that is Trump has been soul-sucking and spiritually exhausting. I’m going to have to find a way to tap into some good juju.

Update: I had an acupuncture treatment this morning. There are reasons I don’t feel well, and they are spelled h-o-r-m-o-n-e-s. Ha! Held hostage by my body once again. By the way, acupuncture rocks. It’s hard to find the words to describe the way it feels. For me, after the initial shock of some of the needles, (if your liver is flaring up, the needle zings as it goes in, and not in a nice way) it’s like a warm electric current flowing through my body. She cradles my head and does acupressure up and down my spine, neck and hips. It is heaven. Oh yeah, she said relax, give yourself a break, you’re only human. I think I’m gonna be alright.

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