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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lovesick

Infect me. Really. Four years after my divorce, I am ready. Or am I? And why did I choose the word lovesick? Why not simply love? I’m not sure, I’m only certain I want the heart-pounding, stomach-swooping sickness that falling in love brings. I’m ignoring the other side of lovesick. The anxiety and uncertainty, the delirium and yes, obsession it brings.

Some days I’m not sure I want to handle more stress, good or bad. Other days the urge to be swept away, overwhelmed by something outside of myself is intense. Several things vex me about this burgeoning desire to be lovesick. What if I think I’m open to love but I’m not—I’m sending out stay away vibes without being aware of it? This is a distinct possibility. My capacity for deluding myself is infinitely reliable. My intuition is of no help here, it is blind to my own faults. Hopefully I’m sending those vibes to the men who would be wrong for me. Then again, I had a talent for choosing the wrong guy when I was younger. Maybe I haven’t lost that talent yet. I also tend to protect my heart. I know, don’t we all? I have raised this to a fine art, probably from the moment my birth mother gave me away. Sometimes I wonder if I’ve ever been completely open to intimacy. I’d like to think I have and am, but I wouldn’t swear on a Bible or anything (not that swearing on a Bible is reliable with an atheist, anyway).

What if the object of my desire is already in my life, and I am too blind to see it? See above. My talents are freakish and specific. I can tie cherry stems in my mouth. I can identify obscure pop songs. I know how to fold fitted sheets. My past history tells me I have had fabulous men in my life who I’ve pushed away, because they were way too together for me. I have changed, but who knows? Self-sabotage is also another of my talents. The corollary to this is what if the sickness isn’t reciprocated? That’s thinking awfully far ahead, but still…Strangely, this doesn’t freak me out as much as it would have in the past. I don’t have to have love. I want love. The difference is immense.

The last concerns all have to do with Lyme. What if I can’t handle love? This sounds ridiculous to the healthy, but to us chronically ill people, this is a real issue. Stress, good and bad, can trigger a shift. Being lovesick could translate into simply being sick. On the other hand, perhaps love helps the body and mind heal. Wouldn’t that be great? My yearning to be lovesick might be an intuitive quest for health. Kinda takes the romantic part out of it. Which brings up another issue: am I chasing after a high that is unrealistic? After all, that’s what I daydream about, walks in the park (preferably on a sunny, mild day), romantic dinners, slow dancing in the kitchen. not the reality of dirty socks and clashing needs. Sometimes I worry that this makes me more than a little silly, like I haven’t evolved much beyond seventh grade crushing. If only it were that easy. I’d get my friend to go to his friend with a note that has two checkboxes: do you a) like or b) don’t like Melissa? Fill out and give back to <fill in friend’s name here>.

Lyme also has given me a checkered resume. Who wants to take on someone who has health problems? In fact, on paper, I pretty much suck. I want someone to give me a chance, but would I give them a chance? I guess that depends on how lovesick I am. Also, (and for me this is gigantic), how judgmental is this person? It is surprising how many people I have met who do not understand what it means to be chronically ill. Those of us who have been lucky enough to experience the special gift of serious illness have usually learned far more than they wanted about themselves. We don’t judge. You never know what someone else is going through. I’m not sure I can be with someone who helpfully suggests that maybe I need to suck it up and then I’ll magically feel better. That man is not going to be too understanding the fourth of fifth time I need to go to bed for a few days.

Jeez, I might have talked myself out of wanting to be lovesick. It all seems like a lot of work, finding someone, getting to know them, falling in love with them, coexisting with them, being open to being hurt…nah…this is one bug I think I could happily live with.

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