moving

I can always tell when I’m fighting an infection now. Babesia, a malaria-like protozoan parasite co-infection that hasn’t been in the picture for over two years (maybe more, I can’t keep all this shit straight) has returned. It’s probably due to an overload of stress and activity. I’m selling my house and down-sizing. I made the decision, traveled to Denver, prepared the house, and sold it all in three weeks. Fortunately, I have plenty of experience in this area. I’ve moved 39 times (give or take a few hasty moves in my college years) both as a child and as an adult. When I was married, I was the one who did all the legwork to prepare the house for selling and moving. As a child, I watched my mom do the same thing. She was highly organized and I don’t recall any trauma from a poorly thought out move. So I scrubbed, cleaned, packed some things up, and made the house look like someone would like to live there.

Houses are selling in less than a weekend in Denver at considerably more than the asking price. I don’t know when I’ll ever see a stronger seller’s market for houses in my price category again. It was no surprise when we had an offer Monday morning after the first weekend.

All that activity wore me down and that’s what babesia was waiting for.  This is part of the reason I’m downsizing in the first place. The more stress I can eliminate from my life the more I can control relapses (I hope!). There was no sneaking up with this infection. It barreled in back in early June and it is raging right now, in spite of being on medication. And babesia has a unique set of symptoms: my eyes ache, itch, water, and blur, my teeth hurt deep in my jaws, I have a sharp headache constantly, I break out in sweats, my muscles ache, and my brain gets anxious and angry. I know, you’re thinking it sounds a lot like my other co-infection symptoms, and you’d be right. It’s the nature of the symptoms that is different. I could write pages on the differences, but I’d bore both myself and you. Let’s just say you know it when you feel it.

At any rate, the end result is a body in combat. I sleep a LOT, like ten or more hours a day. This Sunday I couldn’t stay up for the entire Wimbledon Men’s Championship match. Bear in mind, this was 10:30 am. I’d been up for four hours. In my defense, I detest Novak Djokovic, so not seeing him play isn’t exactly a hardship. It’s just frustrating to bow down to my body’s needs instead of doing what I want. I slept until a little after twelve and when I woke up, Djokovic had won. Yuck. I don’t like him. I find his whiny arrogance combined with his neediness that tennis fans adore him off-putting. I didn’t had the energy to do much else. It is one of the truths of chronic Lyme that it takes a tremendous amount of energy to fight off active infections, especially a parasitic one that feasts on red blood cells, like babesia. 

The other sign my body is working overtime is my appetite. I am constantly hungry. Not junk food kind of hunger, but a deep urge to eat nourishing foods. I crave fruit, protein, vegetables, and fats. I give in to the cravings because I think my body knows what it needs when it’s laboring like this. Today it was leftover grits and fried catfish with some eggs on top for breakfast. Lunch was a big salad and sardines (go ahead haters, sardines are delish). I had popcorn for a snack and dinner was a baked sweet potato and steak. I’m still hungry. But I’m full. It’s annoying. What isn’t annoying is that I don’t gain a pound while this is happening.

So, I’m sleeping and eating or thinking about both most of the time right now. It’s a strange activity, fighting infections. I don’t necessarily feel ‘sick’. I feel like a bear must feel at the onset of hibernation. Grumpy and eating and eating for the long winter and becoming increasingly sleepy. If I don’t have anything else to do it’s not bad. I basically plan meals, cook, and lounge around waiting for sleep to overtake me. But I don’t get too much else done. I can only hope that allowing my body the rest and nourishment that it needs will get me back on track soon, because I have a lot to do in the next few month. I have to find another place to live, pack, and get rid of a bunch of stuff. I have to line up movers and a service to sell all the things we don’t want. I’ll have to sign a bazillion pieces of paper in order to sell and buy a place. I can’t say the process will be enjoyable. I can say moving is one of my life skills that has proven to be incredibly handy. I’ll do what I always do: forge ahead and remind myself daily that when it is over, I’ll be in a better place, physically, mentally, and financially.

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talking to myself

I’m in the “I need to give myself a good talking to” phase of recovering from this latest relapse. It’s the stage where I’m returning to normal and I always do that better physically than mentally. Unless you have experienced unpredictable lapses in your health, understanding the amount of mental strength it takes to get your head straight once again is hard to fathom. It’s real though, and to deny your brain the time to heal, too, is just plain silly.

That doesn’t alleviate the frustration of reclaiming your brain. The mental effects of Lyme are perhaps the slipperiest symptom of all. Quantifying mental distresses like anxiety, depression, OCD, and depersonalization can be tricky, especially if they are directly tied into an unpredictable, yet reliable pattern of illness, like Lyme. I’m not sure medication would help me, for I function quite well (translation: I hole up and hide from the world) even when my brain has walked off the job for a while. At any rate, I’m weepy and angry and sad and anxious and scattered and blank when I’m sick and then I get better. It’s that in-between phase that I inhabit right now, the sputtering back to life of the ol’ bean.

The first thing to come back is the need to ‘put things back in order’. I think I’m doing great and keeping up with everything and then I discover all sorts of stupid shit that I’ve done. Once that’s sorted out, I have to see what emails/business/friends I’ve neglected or forgotten and reach out. Then I must clean and reorganize. This time it was my closet, moving around my “winter” clothes for my “summer” clothes (quotes intended, because in Tucson, they’re the same!). So. My life is back in order and it’s time to start thinking and writing again. I’ve tried to write while relapsing, and I can assure you that it is an exercise in foolishness, the writing wooden and the thoughts going nowhere. I still do it, if for nothing else but the entertainment of reading it later.

There are a few things I’ve discovered about my process, the main one is every single fucking time I think my brain is not going to come back. I grow impatient and start scolding myself. Thus the “give myself a good talking to” phase. It that an old-fashioned phrase? I’m sure I heard my mother say it and read it in books. I started using it once I left home, and had no one to do it for me. The voice is usually my mother’s, her pragmatic, tough view of getting on with it has served me well over the years. Not with Lyme, though, because the act of getting on with it is more complicated than buckling down and working harder. My brain is still warped while I’m doing said talking to and attempting to buckle down. Like old furniture, my brain takes time to warp, and more time to repair, the wood coaxed back to its former shape with pressure, clamps and glue. There is no rushing the process. Telling myself to get going again is my version of clamps and glue, applied liberally to quite literally straighten myself out.

Sometimes I wish there was a way to see what is happening inside my brain matter during relapse, recovery and  periods of wellness. I imagine my brain swollen during relapses, the neural pathways squeezed so tightly they only partially function, and when they do, they misfire. During recovery, I see the pathways opening randomly at different rates, struggling to reestablish the known and familiar. It’s the wellness phase that I’m most curious about. Have some of those pathways been squeezed too hard by inflammation and been destroyed forever? On the other hand, I try not to think about this too deeply, because I’m not comfortable with the idea that every relapse invites a bit of destruction to what makes me myself.

I have a lot of freaky thoughts while my brain reawakens. I’m sure this is completely expected and considered normal by neurologists who study brain traumas, but man, is it weird. The good thing is that they are fleeting and not so weird that I worry about becoming permanently mentally ill. In fact, there is something exhilarating in knowing that all these strange manifestations are caused by an identifiable source. Katie likes to remind me of this frequently when I tell her I’m not thinking clearly.

“I’m not thinking right now and I can’t figure out why,” I say.

“Yes you do,” she says. “It’s your stupid fucking Lyme.”

Katie is the angel/devil on each shoulder and I am lucky to have such an uncensored voice. She doesn’t scold or sugar coat. She tells it like it is to me, as she has done her whole life, whether I want to hear it or like what I’m hearing. She also tells me to relax, I say this every time and every time I get better. This is far less guilt inducing than my mother’s voice. From now on Katie’s voice is the one I am going to strive to channel whenever I feel this urge to give myself a good talking to.

I don’t normally post links, but this very short article on the chronic-symptoms of those of us who continue to suffer from Lyme long after we’re “supposed” to is very good at explaining the experience in our society and healthcare system.

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denial

I’ve never particularly been one for self-denial. Not that kind! Jeez, people. The kind where I don’t ‘allow’ myself to do things I might enjoy because I’m chronically ill. There are several reasons for this, but the main one is that over time, I have come to feel guilty for still being sick and have twisted this into a toxic “I’ll do it when I’m better” mantra. This was extremely easy to stick to during COVID, but now that the world is coming to life, I’m starting to wonder why I’ve been doing this.

As I expected, there are tons of articles about this. There is guilt, embarrassment, shame, and disappointing others, and whoa! back up…grief. I think I’ve discussed this one with my therapist, but I shrugged it off as something I’ve already been through. What if I haven’t, though, and this stupid mantra is one of the ways I’m dealing with mourning my old life. I didn’t know this, but ‘serious illness’ is #6 on the life-stress scale, after Death of a Spouse, Divorce, Marital Separation from a mate, Detention in Jail or Other Institution, and Death of a Close Family Member. I suppose I have ceased to think of Lyme as a serious illness anymore. It’s been with me for over six years now, but it’s nowhere near as debilitating as it was for the second, third, and fourth years.

Wow. Maybe I am grieving, because sometimes I forget that there were THREE WHOLE YEARS of being sick over 80% of the time. That’s crazy. I could be either beginning to grieve again, or emerging from a long period of grief. Ugh. I’m going to have to think about this.

Fortunately, I’m not alone in my journey. So many people are having trouble emerging after a year of lockdowns that there are columns offering advice on how to rejoin the world. The decisions can be overwhelming, especially if you have worries about catching anything. Can I fly? Is it better to drive? Where can I go, and once I get there, what can I do? When do I where a mask? What if someone confronts me about wearing/not wearing a mask?

Overall, I’m not particularly worried about any of these things. My fears are more existential, it seems. Do I deserve to be out here? Should I allow myself to be frivolous, to have fun? If I do, will it be my fault if I have a relapse?

I just noticed the language I used above, the words ‘deserve’, ‘allow’, ‘frivolous’, and ‘fault’: I am limiting myself, I’m not sure it matters if it’s because I feel guilty, or I’m embarrassed, or grieving. Now that COVID restrictions are lifting, there is no excuse for self-denial. I have to re-learn how to let go and do more things that I enjoy. This is different than relaxing. I have to relax and take it easy to stay healthy. But what good is a life that isn’t lived?

I came back to Denver this week for a lot of reasons, but one of the main ones was to see my Lyme doctor. I knew something was off kilter, but didn’t know what. I’ve had a return of babesia and bartonella. I asked him if it could have been something I’d done. He said maybe, or maybe they made a return for reasons unknown. I hate the feeling of bacteria, parasites, and spirochetes hiding in my body, little bombs just waiting for an opportune time to reemerge and proliferate and not having much control over it.

Babesia is a real fucker, and I’d forgotten the crippling symptoms. The main ones are burning, blurry, itchy eyes, neck pain (like whiplash bad), headaches, body aches, a wicked intermittent sore throat, drenching sweats, and constant fatigue. This one, though, is the one that gets me: migrating, unrelenting, throbbing pain in my teeth and jaws. It gets so bad that I can’t chew. I spend quite a bit of time thinking that it’s not babesia, that one or more of my teeth are truly rotting or cracked or something. That’s the babesia speaking, as there is also a mental fog/rage/OCD component to deal with. And then the pains move somewhere else, and my teeth are just fine.  All in all a miserable experience, one I was glad to put behind me several years ago. Seems that babesia has other plans for me, forming cysts in my body until the time is right.

When I’m relapsing and herxing, self-denial is the last thing on my mind, the thought of ‘getting out there’ momentarily shoved aside. On a day like today, I feel thankful to walk the dog, get through some Spanish, and take care of myself.

But like everything Lyme, I’ll take the herbs and medicines, and the flare-up will subside in a while. I will play catch up, and then I will start wondering if I should get myself out there into life. Logically speaking, if there is no predicting when I will relapse, wouldn’t the strategy be to ‘plan’ for a relapse after I’ve had a trip, or a conference, or whatever I choose to do? That’s kind of what I’m thinking about now. I’m not ashamed to admit that I’m scared. Scared of making plans and scared of NOT making plans. Both choices carry risks and neither is a guarantee that I won’t relapse and feel as awful and numb as I do right now.

I can’t live like that though, and I’m going to have to figure out a way to spin this to myself in order to move forward and live. I want to stop denying myself the pleasure of playing pickle ball, or taking a trip to see friends once in a while, or going to the movies, or even relaxing one afternoon to binge-watch tennis.I think I’ll give myself credit for recognizing my dilemma and work on stopping this self-denial and start planning for the future. When I feel better.

 

 

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Judgy

I try mightily not to be judgmental. In the effort to put myself in someone else’s shoes, I fail most miserably with myself. Some of the ridiculous judgements I make (only with myself): should you be doing this? Why aren’t you doing that? Do you really feel that bad? You’re just being [lazy, a drama queen, too soft, too hard, not serious enough, too serious] and more, every permutation a judgment on me.

It’s hard not to do this when you’re always navigating a chronic illness. Chronic illnesses like Lyme are floaty ephemeral things, randomly disrupting your life in dozens of ways. That makes it less real and concrete, unlike, say, arthritis, or diabetes, or an illness like cancer. In these illnesses,  the causes of those diseases are measurable by tests and the core symptoms never shape-shift and morph on a whim.

And Lyme, along with its co-infections, may be chronic, but it is mostly—and I fucking hate this word— manageable. And so I judge. I look at people I know who have far deadlier and scarier challenges than Lyme and all of a sudden my ability to see things as they are for me vanishes.

When I get in a judgmental funk, I often second-guess what other people are thinking. ‘Well, she was able to [swim, hike, write, clean, cook, shop] so she can’t feel that bad,’ ‘She was fine yesterday. How can she be sick today?’ Maybe they don’t think any of these things, but I think they do. I tell my self to stop it, but I don’t listen when I’m in this kind of mood. Like an overtired toddler, once I’m wound up, I can’t unwind.

I tend to second-guess myself, too. At least twice a week for the past six years, I wonder if I really have Lyme. I wonder if I am relapsing at all. You’ve felt pretty good for the past <day, week, month> my brains says. You’re probably not sick at all anymore, just goldbricking. Cool etymology, goldbricking. Look it up.

That’s when I catalog my current symptoms, the ones that make me doubt everything. Yet, they are the realest part of all. They may not operate on a schedule, but an aching liver, shooting pains in my teeth, a neck ache, sore feet, and muscle pains are concrete, solid things that, as much as I deny them, cannot be denied. Stoicism does not equal wellness. The other symptoms, like fatigue, or when I forget dad’s phone number and address, or what day it is, are much easier to judge as non-worthy symptoms of illness.

And so I scrutinize, picking at myself relentlessly. It starts from the moment I wake up and assess how I’m feeling. How bad is that headache I ask myself. Bad enough to not walk? You have to walk. I suppose if I am being generous with myself, I’d say that this state actually gets me to do things, regardless of how I’m feeling. I almost always begin the day charging hard, getting up early and getting as much done as I can. That’s because it could all grind to a halt at some point in the day. I’m okay with that if I’ve managed to accomplish a few things before the crash.

This has been workable during COVID. We all seem to have had a collective fever dream where ordinary life has hung suspended from the pandemic. Being judgmental took a vacation as we struggled to deal with isolation and fear.

Now that most people’s lives are slowly returning to ‘normal’, I’m certain that the critical cacophony in my head will increase in direct proportion to my perception that everyone else is moving on. And I will respond with the urge that I have to work harder and do more, an insane reaction when I think about it. But that’s just it, isn’t it? My brain becoming mushy with a relapse, my body betraying me once again. I’ll obsess about lottery tickets, fight the feeling that I am running out of time (for what, I don’t know), and worry that I need to write and do things to prove I am worthy, even while I am sick.

My therapist tells me things like, ‘be kind to yourself’, and ‘give yourself some credit’. Easier said than done. I don’t know why I’m harder on myself than on anyone else. If I knew me, I’d think I was handling a shitty hand pretty damn well. Maybe I’m harder on me because I do know me: my foibles, weaknesses, and bad habits. Lyme has a way of exacerbating the bad parts of me and obscuring the good parts. I need to keep working on things that matter to me because I want to, not because I’m struggling to define my self-worth outside of being a chronically ill person.

I have a feeling this is going to take some time. I’ll probably stomp around on my walks muttering to myself, trying to figure out how to accept that who I am is not defined by my illness, nor is it defined by how hard I work to show that I am not ill. It’s a stupid conundrum that is self-created. It will become one of those opportunities for growth that I have come to loathe.

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comfort

This blog was originally about losing my mind and being sad when I got well enough to realize I lost my mind for a good long while. There is little doubt (at least to me) that my brain is returning.  I kept veering off the subject of crazy, though. and into grief. I had no idea that I was and am grieving right now. Grieving is  different than depression. Grieving the loss of something partially returned is different than mourning the loss of a loved one. Nonetheless, grieving overtly implies loss, and only now can I see what I’ve lost in the last three years. Only now that I am returning to health that I have the energy for such an indulgence. Perhaps ‘indulgence’ not exactly right—it seems unavoidable—but why can’t I use my returning energy for something useful?

I haven’t had a huge amount of loss in my life. Three of my grandparents died before I was thirteen. My Nanny died when Katie was young. I mourned, but I didn’t know profound loss until my mom died. That period of bereavement morphed into an outpouring of grief for all the hurts in my life. What purpose does this serve for humans? It’s never fun, always difficult, and the end result is, what? A blank exhaustion, a feeling that there are simply no more tears to be shed. That particular part of the journey is different for everybody.

What I really want to know was why I spend so much energy on grief. There are four stages of ‘normal’ grieving: Numbness/disbelief, Separation/distress, Depression-mourning (are the two inseparable?), and Recovery. There is something called ‘complicated grief’ (wtf? is that different from ‘simple grief?) and ‘infinite loss’. I hate having my journey so neatly compartmentalized, so pedestrian. On the other hand, knowing this is normal is comforting.  I found myself feeling much better just reading about  ‘Perpetual complicated grief’, aka, constant sorrow.

I am not a woman of constant sorrow. There are times when an inertia settles over everything, and that’s unpleasant. The grief is like a low-grade fever, not incapacitating but definitely a factor in my everyday life. Grief from chronic illness is different from acute or terminal illness. Those illnesses have  a definite end, one either gets well or one dies. Chronic illness is a series of losses, unending, and multiple. These are known as infinite losses. Great. Constant sorrow over infinite losses. Sounds Sisyphean, and it is.

The most difficult aspect of chronic illness  and grief is girding up for the next round. As I write this, it (finally, DUH!)occurs to me this is why I am continually battling exhaustion. This is why I nap daily and sleep eight hours a night. Maybe grief serves as a reminder to my body: this isn’t over, you need to rest, don’t get too excited, now. As if I need a reminder.

Sometimes I wonder when this (Lyme and grieving) will be all over. More often, though, I remind myself that the weight of my illness and grief are the only things I get to determine. So I bumble on, wrestling with keeping both loads as weightless as I can, while still trying to live. I need to be smacked in the face to recognize what is often right in front of me. Putting a name on what I am experiencing is what I need to recalibrate. Which brings me to comfort. Anyone who has gone through this process understands the need for comfort. Respite might be the better term, but comfort through the process is elemental.

I have time-tested activities that provide comfort to me. Some are mundane, like cooking and cleaning. The results of both are deeply soothing because they are concrete reminders of my usefulness and skills. Movies. Cocooning in a dark theater and entering another world, no matter how grim, is essential. Music. Because singing loudly and badly with your favorite songs never gets old. Walking the dogs. No explanation needed. Playing pickle ball. I love the game and the people. I don’t want to brag, but I’m popular with the over-65 men. Writing. For some reason I love spilling my guts to everyone. After the first time, it gets easier. Lifeguarding. Any work is better than not working. Besides, I like lifeguarding. I think deep thoughts staring at the pool.

Sometimes it’s hard to recognize whether I’m grieving or relapsing. A friend who has battled a chronic illness for years told me that when he’s having a good day, for whatever reason, he lets himself enjoy it. Does whatever he wants and doesn’t feel guilt AT ALL. I tell myself to do that, but it isn’t easy. I have trouble gauging how much I can handle, and tend to beat myself up when I do too much. Maybe when I get to the recovery stage I can relax and enjoy life fully.

Where does all this grieving and ruminating leave me? A little bit stuck, I guess. I am going to have to trust in myself (always dicey) and have faith that one day grieving and healing won’t be so hard. Meanwhile, I keep busy cleaning, resting, lifeguarding, writing, vegetating, playing pickle ball, walking the dogs, working from home, and above all, trying to get to that zen space of enjoying myself guilt free.

ps I started this blog before Las Vegas. The sense of grief over events in the world today is a daily battle. Comforting and being kind to yourself is more essential than ever.

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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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almost

I have discovered recovery is more difficult than being ill. I am in the land of “almost well”, a state as close to purgatory as I can imagine. The difference between almost well and healthy is a sheer  mountain wall, technically difficult and requiring great strength. The difference between illness and almost well is a gentle poppy field like the one in the Wizard of Oz, easy to cross, yet vast and with many rest stops. The illness is a narcotic, blunting the endless trek to almost well. I suppose there must be a boulder field with jagged rocks before one runs into the monolithic wall of almost well. The effort is takes to climb the small boulders clears the mind and gives one false hope. The boulder field, for me, had a few fields of poppy, where I stayed, stupefied and disheartened once again. I also found a few trails, where I got a fleeting glimpse of normal.

It has been nearly three years since my tick bite. 2016 was the worst year. I earned a whopping $1000 for the year. I don’t remember large portions of the year. The fact that I wasn’t remotely aware of how bad it really was is the narcotizing effect of a serious illness. For some Lyme patients, especially those of us who did not get a quick diagnosis, doctors use the words “chronic Lyme disease”, or “post-treatment Lyme disease syndrome” (I like that one, wordy and scold-y at the same time). I’ve been denying my status as one of those who might be chronic. I had to think about what “chronic” means, as it pertains to Lyme. If I google these terms, I get a long list of sites with vague definitions that mainly discredit the notion that it exists. It does. I’d love to not have relapses, or slides, or persistent, chronic fatigue. I like to pretend I’m just fine, but that doesn’t work, either. There are a lot of theories about this. Fuck theories. They don’t do jack shit for making me healthy.

The tone of my discussions at the doctor’s office have changed. We talk about “plateaus” and “shifts”, as if Lyme were a geologic event. I need to once again obsess over my symptoms, or lack of them, to gauge whether I am having a relapse (shift), or holding steady (plateau). My big fear is that I will plateau at almost well. Almost well isn’t awful. At this point, unless I have a seismic shift downwards, I won’t die of Lyme. The chronic, almost well part is the fact that sucks. It means I will always have to manage my energy and my health. It means I will be a delicate flower, getting enough rest and good food, and not getting stressed out. BORING! But definitely manageable.

If I sound a little whiny, I am. I feel a lot entitled to my whininess, until I think about other people I know. Almost well would be a dream to some of them. I know this, yet I persist in feeling cheated. Cheated out of what, exactly? There are no guarantees that me or anyone will live long and perfectly healthy lives. Lyme has insured that I will take care of myself for the rest of my life, and that’s not a bad thing. Sometimes I meet people who have had very few health challenges. My dad comes to mind. He’s now had three surgeries, but before his knees were replaced he had had one back surgery in ’79 or ’80. He is not happy when his body isn’t working. He’s not a bad patient, but a resentful, reluctant one, as if these things should not be happening to him.

I’m not knocking my dad. His fighting spirit and unwillingness to fold are some of the many reasons he’s happy and healthy at 88. I don’t have that luxury anymore.  I’m not going to waste my energy on resentment disbelief. Because I am pathologically optimistic, I am going to assume (as I do in every bad situation, even when it’s obviously false) that I will plateau at normal. I now have the luxury of deciding what is important to me and making sure that’s what I do. Is it my house, or traveling? Do I like where I’m living? What do I really, really want to do that I haven’t done yet? Jumping out of a plane? Hell, NO. RVing? YES. Two questions answered. There are a bunch more waiting for me.

 

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stamina

I have lost my stamina. I’ve become the person others look at to feel better. You know, the “my life sucks, but it could be worse, I could be as sick as Melissa” line. I know, because I’ve done that. Haven’t we all? One of my guilty pleasures used to be “Toddlers and Tiaras”. Yes. It’s horrifying. But I had the satisfaction of knowing I wasn’t one of those  moms. It’s disconcerting to be on the minus side of the equation. You walk this line of wanting to appear strong and in control, but also being honest about being ill. It is shocking how much energy Lyme uses up. At the height of my illness, November through March of last year, there were days when stepping into the shower required a pep talk. There were times when Katie had to drive me everywhere, carry my purse and all the shopping bags, and sometimes handle the transaction (I’ll write about how I lost my mind…I’m simply not ready for that yet). I will be forever grateful to her for how she stepped up. I’m just now realizing how hard it must have been on her, seeing me wander through the house, dark circles under my eyes, a shadow of her once indefatigable mother.

On one of my doctor visits this June, we discussed what I could and couldn’t do, because I was starting to feel better. As in all things Lyme, it depended. It depended on how I felt that day, what meds I was currently on, how my liver was functioning, how hot is was (Lyme patients are notoriously sensitive to heat), etcetera, etcetera, etcetera. I was given a few guidelines. I could swim, but start with 300 yards and no more than 500. I could play pickleball, but be careful. I could go back to work, but not full-time. He cautioned me several times about doing too much. Of course, I ignored some of the advice. What did he know? I had stamina! HAHAHAHA! Lyme likes to fuck with you, and the joke is always on you.

By mid-July I was in full relapse mode. It was as bad as it had ever been. Damn, I was pissed! And humbled. If you’re not humbled by Lyme, you have an ego of Trumpian proportions. There is something powerful about hitting bottom. If you’ve never been there, I’m not suggesting a ride down, but if you’ve found yourself there you know what I mean. I wallowed down there a while and reached the strange nexus of choosing to rise and also not giving a damn. You get stripped down to what matters in your life. The problem for me is as I rise back up, I start to give a damn once again and I second guess myself. Worse, I let myself hope without any expectation or guarantee that what I want will happen. This messes with my head. I’m not the same person I was before Lyme. I had stamina. The definition of stamina is “the ability to sustain prolonged physical or mental effort.” Well, I could sustain the prolonged physical effort of surviving at the bottom for a long fucking time.

But what if there is no bottom, just a boulder to push up an endless hill? Don’t we all feel like life is a Sisyphean punishment sometimes? I hit a point where I could see, for the first time, the possibility that ending your life could be preferable to suffering. This is quite different than contemplating suicide. It’s the acknowledgement that everyone has a point where the suffering is too much to bear. At what moment did I choose to crawl upward, Lyme be damned? At what point of suffering would I give up? I would never put myself in a position to get Lyme again (although I’m sure I could bear it—we can all stand much more than we think).

Stamina has a cost. I am weaker that I was. I have to plan for the possibility that Lyme may have altered my life irrevocably. I have no idea what the future looks like. I hope there’s love and happiness and meaning and purpose. I need stamina to create this reality with what is left after Lyme. And I want to get back that “I don’t give a damn” attitude, because I was fearless. I haven’t lost all of it, but doubt creeps in. I’m not a shadow of my former self.  I’m morphing into a better self. It is as hard as being sick. Sometimes it’s harder, because I was already pretty great. HA! There’s that I don’t give a damn attitude. I’m going to need that. And stamina.

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