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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bowling pins

Lately I’ve been looking at my life as a set of bowling pins. The bowler is life, and when all ten pins are gone, the show is over. I like the bowling pin analogy, because when one pin goes, it tends to knock down the other pins. If the ball strikes hard enough at the right spot, a lot of them topple. Many people go a long time without having any pins knocked over. Their bowler tends to roll a lot of gutter balls, or the kind of rolls that make the pins wobble without falling down. My bowler came out with a wicked spin before I was even born, knocking out the head pin. I’ve managed to reset the adoption pin over and over throughout my life, relegating it farther to the back. The knowledge of being unwanted when I was born has become easier to bear as I’ve gotten older.

At the age of seven, my bowler knocked down about eight pins when I fell out of a tree and fractured my skull.  I managed to reset those pins when I came out of a coma with only the loss of hearing in my left ear.

After that, the bowler messed around for a good long time, knocking down a few pins here and there. Then I don’t know what happened, maybe the bowler took some lessons or something, because at twenty-one I was diagnosed with endometriosis. That knocked down three or four pins with every surgery and every new treatment, until I had all the lady parts taken out. The last surgery was when I was 42.

At each juncture, I was able to reset almost all my pins. By the time I got Lyme, I’d say I was at eight pins, ten being perfect health/life, and zero pins being, well, dead. Since then, Lyme has been the number one pin, with a shifting cast of health problems behind. I’ve started re-reading Dr. Richard Horowitz’s “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease.” Not a very exciting title, but it’s jam-packed with information. Aside from bartonella, most of my miseries are the secondary infections and inflictions brought on by an immunocompromised body. Dr. Horowitz calls this ‘MSIDS’, or ‘Multiple Systemic Infectious Disease Syndrome’. Quite a mouthful for what is essentially a pretty easy concept to get. He believes that diseases like Lyme open the door for  parasitic or fungal infections, allergies, environmental toxicity, compromised immune function, and many others.

I’ve had all of these, labelled on the pins behind Lyme for varying periods of time. The grossest one wasn’t parasites, although that was definitely an experience. Note to all of you: deworming is not fun. No, the one that made me gag (literally) was thrush. My tongue and mouth were coated furry white with fungus. Most disgusting thing I’ve seen on my body. At my worst, I’d say Lyme and all of its shitty friends had me down to about four pins. I’ve reset many times in the last six years, although the amount of upright pins has dwindled to seven, maybe eight or so on my best days. That’s because I’m never completely well. There’s always some niggling symptom or problem.

The newest pin behind Lyme is not technically new. It’s a new name for a bunch of unexplained problems I’ve had since my early thirties, about the time I had my eighth surgery. I itch when I exercise. I’ve had an unexplained cough for over twenty years. I have random allergies, most definitely not seasonal, and sometimes I wheeze when I cough. I don’t know what it was, or is. The symptoms come and go, and have never been bad enough to incapacitate me. However, after I had the Johnson & Johnson vaccine, I had itchy, watery eyes, blurred vision, headaches, and itchiness over my body, plus a wheezing cough.

I read something on a Lyme forum about a ‘mast-cell storm’ after a Lyme sufferer had their COVID vaccine. This meant their immune system overreacted to the vaccine. At any rate, to calm a mast cell flare, doctors recommend using H1 and H2 histamine blockers. Sounded complicated, until I read more. Zyrtec and Claritin are H1 histamine antagonists. Tagamet, Pepcid, and Prilosec are H2 histamine antagonists. I was so miserable I bought some of both and took them. Within two days I felt much better, and I mean much better in general.

Is this mast cell storm a one-time thing, or something else? The information is, like Lyme, all over the place. Yes, it’s a real thing, called “Mast Cell Activation Syndrome,” or MCAS. And yes, there is a Lyme connection. But for me, these two little pills made a difference in those other problems I’d had for years. I’ll bring it up with my LLMD on my next visit to see if he’s had other patients with this.

Some people think this would be a failing of my doctor not to notice all these symptoms and put them together for me. I would say those are people who don’t understand how complex and perplexing MSIDs are. Part of my job is to help him by analyzing my symptoms and noticing patterns and unintended consequences, like taking medicines after the vaccine. Is it frustrating? Sure it is. But these kind of diseases are on the rise, so the model for patient-doctor-doctor-doctor relationships needs to change (I put a couple of extra doctors in there because Americans LOVE their specialists).

My bowler so far has been frustratingly competent, always knocking out a few pins. There have been no strikes, but there have been a few spares. It is inevitable that one day the bowler will roll a great, booming strike in my sleep—at least that’s what I hope. Because if I had my druthers, it would be when I am a ripe old age, after a fabulous meal. Some great sex would be nice, too, but then one can’t hope for too much.

 

 

 

 

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pot

Since I have been on the subject of herbs, I might as well talk about my favorite herb. I have a long and complicated relationship with marijuana. Sometimes she’s my bitch, and sometimes I am hers. Mostly it’s a solid, happy union that makes us both happy.  Since legalization, I’ve been able to choose what strains I want, much like going to a liquor store and deciding if I want tequila, rum, or scotch.

I smoked for the first time when I was twelve, with my brother and his friends, on a Tuesday night in Covington LA when my parents were attending the symphony. We stood in a circle in the driveway, and I remember that sense of being included with the older kids. It did nothing. The second time, I was thirteen, at the base of the dam at Evergreen Lake. It was fucking freezing, and the snow was deep. That time, I felt something, and I liked it.

Later that year I also had my first paranoid moment while high. We had smoked while caroling in Hiwan Hills. We ended the night at someone’s house on Meadow Drive, near Hiwan Ranch. Their parents had an open house night, and there was a nice spread of food. I remember feeling overwhelmed with the colors, the people, and the food. I didn’t want to talk to anyone, but I really wanted one of the rum balls. One of the grownups came up as I was reaching for my third or fourth one and started talking to me. I’ve never forgotten that moment of utter panic as I tried to form coherent answers to his questions.

Once I moved to Kingwood, I found a group of kids who liked to smoke and drink. I never smoked before or during school, nor did I smoke on school nights. On the weekends, I smoked whatever I could whenever I could. Here’s a fun fact: I never bought pot until 2014.  Another fun fact: I’ve never rolled a joint. In the  ’70s and ’80s provenance of supplying and preparing pot was a mostly male one. I’m sure some of my girl friends bought and rolled because they wanted to have it for themselves when they wanted it, but I was content to let boyfriends and other guys do all the work for the pleasure of my company (Ha! Totally doubtful, but I guess it worked).

It was when I went off to UT Austin that I really started smoking in earnest. My freshman year, I was high every single day except Christmas Day. Back then, what I was seeking was…I’m still not sure. Pot relaxes me, and shuts down the constant chatter in my mind. Kind of what alcohol does for a lot of people, but without the calories or hangover. I get horrible hangovers from not much alcohol.  After that crazy year (it was so much more than smoking pot. Things were consumed. Risks were taken. Stupidity ruled.) I worked to find balance. I went months, even years without smoking. I slowly gave up drinking. I cleaned up my lifestyle. When I went off to Bennington, I was an occasional drinker, and had decided not to smoke at all while in school.

Katie and most of my friends who smoke consider me an absolute flyweight when it comes to smoking pot. I say I smoked everyday, but that is one or two hits off of a pipe that wouldn’t even get most stoners a mild buzz. I don’t know if there is a term for being a cheap stoner, but I am one.

Then came Lyme. Fortunately for me, I had gotten a medicinal license back in 2009 and kept it up, more to make a political statement than any urgent need, other than an achy knee. After I got sick, I couldn’t sleep, everything ached, and I was depressed as hell. Katie took me to the dispensary and I got a daytime strain and a nighttime strain. They worked so well I never needed painkillers or sleeping pills. Of course, I was stoned 90% of the time, but I was sick 100% of the time during that period.

Right now, I am in a nonsmoking phase. It was too much trouble to worry about bringing anything to Arizona and I was feeling good. I have times where I wish I had some, but then I look at the map and see that I have to drive half-way across Tucson, and they only have eight strains, and the prices are astronomical so I decide I can wait. I may never go back. I may become an occasional smoker. I may smoke every day again. Like I said, we have a complicated relationship.

 

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Herbs

People are often amazed by how many herbs I use for Lyme treatment. Our medical community has done a fine job of discrediting the use of herbs to treat many illnesses effectively. I think people imagine me wandering down the aisles of Whole Foods or Natural Grocers, picking up things that will help me with little clue other than ‘I heard it might help’. I do buy herbs or supplements like this, especially for sleep, but not for Lyme. The fact is, any LLMD worth their salt will attack Lyme using many different methods, including herbs. Some herbs are better for one thing, and others are better for another. I buy the herbs I need through my LLMD. Usually, they are proven protocols cited by leading authorities in the field of Lyme, like Dr. Richard Horowitz, or Steven Buhner.

So when something flares up, we (this is not the royal we, Lyme patients have to be adept at describing what is happening) have to evaluate what strategy to use and why. It might be bartonella, or an opportunistic secondary infection, or a return of babesia. There are several possibilities and one medicine does not fit all.

Anyone who thinks herbs aren’t ‘real medicines’ needs to wake up. Aspirin, digoxin, quinine, and morphine are just a few drugs derived from herbs. It’s no wonder drug companies have an active interest in suppressing herbal medicine. I can see some people rolling their eyes, envisioning the very thought that herbs or supplements have any place in medical care. Fine. I don’t care. Trying to convince someone that this is not true is useless, as is trying to convince people who think all pharmaceuticals are bad, or ‘not natural’. To me, both positions show a profound unwillingness to place results over beliefs.

This is not new. It’s as old as the art of healing. With a complex disease like Lyme, the push and pull between science, traditional healing, and other factors like diet, exercise, and religion, leaves most Lyme sufferers with far too many options. The cost of treating Lyme means many patients don’t get proper treatment. Insurance usually doesn’t cover much more than 30-60 days of doxycycline.

This is compounded by the belief that illness and/or ill health is an option, that your lifestyle or lack of discipline is to blame for your illness. Not everyone believes this, but in wealthy countries like America, there are groups who frame illness and ill health as a failure to a) pray enough, or b) not exercise enough, or c) not take enough supplements, or d) not  have the right healthcare and/or not visit the doctor/get tested. There are probably a lot more subsets, but it is a strong system of ‘blaming the ill’.

But I digress. I am at a stage where I rely mostly on herbs. If I have a severe relapse, I’ll take whatever is recommended to get back to health. I’m not a snob. Nor am I a fool. Lyme support groups online are filled with ‘miracle cures’ and also with long, long sagas of literally dozens of tests, doctors, and medical treatments. I don’t have to go to the doctor every time I feel out of sorts, or have a new symptom. I won’t jump on the Rife machine bandwagon, or coffee enemas, or whatever someone has said worked for them. However, when dozens of other Lyme sufferers say there is something new that might work, I’ll ask my LLMD when I have an appointment. Dapsone is one such pharmaceutical that has made a huge different to some patients. Stevia is another one when it was found to be a biofilm buster.

It really is a lot of work staying current with treatments and protocols. I have biases. Maybe coffee enemas have helped some people. I’m just not a fan of any enemas, so I’m not going to try that one. You won’t ever find me praying to get better, but I don’t mind if people say they are praying for me. I actively avoid going to the doctor for the little things, and that a might come back and bite me in the butt someday. I’m willing to take some risks as a tradeoff, as are almost all ill people, because a life spent striving for perfect health might not be living at all.

It could be said I take a relaxed approach to my illness, if that makes sense. Obviously this isn’t always possible. One of the luxuries of Lyme (Haha, like there really are any) is that when it is controlled, it’s not likely to kill you, at least not for a long, long time. So I take my herbs, as I did this past week, when I had a flare up. The herbs caused a herx (Jarisch-Herxmeimer reaction, or ‘when the cure makes you feel like shit’) as I knew they would. They also made me feel better, as I hoped they would. When that happens, I wake up feeling better. The clouds part and the sun shines and all is right with the world once again.

I haven’t been hospitalized, nor have I used IV antibiotics. I feel well a good deal of the time. I have accepted that perhaps Lyme will be with me always. I use herbs and pharmaceuticals. Perhaps one day Western medicine will become more flexible about how to heal their patients. Until then, I’d say my choices have been right for me and I stand by them.

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vaccine

I got the Johnson & Johnson COVID vaccine this week. Surprisingly easy, except for the questions. “Have you had any COVID symptoms in the past week?” “Have you had muscle aches, fever, or fatigue in the past 24 hours?” Ummmm…yes? I’ve learned to lie when asked these kinds of questions. It’s not technically a lie, but the explanation of Lyme is too lengthy to go into. It’s more of an omission. I easily separate Lyme from the rest of my health history. If someone asks me if I’m healthy, I say ‘yes’, because I am healthy, aside from Lyme.

Most people my age are on some kind of prescription for something. Blood pressure, cholesterol, thyroid, etc. Not that they aren’t healthy, but they need a little help. So far, I have none of those problems. The ol’ colon is clean as a whistle, the boobs lump free, and no weird moles or skin things (thank you, birth mom for my genes, and real mom, for making me wear sunscreen). My blood pressure is always 116/72, my pulse is in the 50s, and my weight is still teetering a few pounds shy of ‘mildly obese’. So yeah, I consider myself healthy.

And yet, almost every day there is something that hurts or doesn’t feel right. The brain doesn’t fire properly or my throat hurts, or my joints, or my eyes are blurry and irritated. I’m fatigued, or my body aches. There are a ton of other minor problems that come and go, like death from a thousand paper cuts, but none of it is a big deal to me anymore. It just is. Once, while at an appointment with my Lyme doctor, I mentioned some things that had been bothering me. He said, “Why didn’t you call or go to your primary care doctor?” I answered, “Why bother? Almost everything that goes wrong is Lyme-related and disappears or changes.” He agreed with that, and I’ve learned that I’m the one that has to separate how I’m feeling. I use two categories: “Lyme-related” and “getting old.”

I suppose there is a third category, the “Oh shit” one, but so far, I’ve been out of that column since I burned my right hand six years ago (I think it was six years ago, but I just got my daughter’s age wrong, so I can’t truly be trusted with anything time and date related). The thing is, through Lyme I’ve learned that people tend to freak out about their health far more than I do. I haven’t gone to a primary care doctor since that burn, because I haven’t needed to. Virtually everything wrong with me is Lyme related.

As far as COVID goes, many of us Lyme patients have had to play the really fun game of “COVID or Lyme?” After all, the early symptoms for COVID and ongoing Lyme symptoms are virtually the same. I usually allow myself about five minutes to assess how I feel and then I wait to see if anything changes. It usually does, either within hours or days. The pain migrates, disappears, or morphs into another symptom that has nothing to do with COVID.

There is another dimension, the question of how vulnerable Lyme patients are to COVID. My immune system is compromised, but how vulnerable am I really?  I chose to stay safe and isolate myself rather than find out the answer to that question. And I chose to answer the pharmacists’ question as it pertained to COVID, not Lyme. The week before the vaccine, I had been experiencing some old symptoms that I knew well. I had already contacted my LLMD and gotten the answers I needed to begin treatment. I had no fever and I wore a mask. I know my body very, very well and had no doubt that what I was experiencing was not COVID. So I went and got the vaccine.

And after the vaccine, I don’t know if I had a reaction to the vaccine or if it was Lyme. I guess that part doesn’t really matter, since it wasn’t going to change the fact that I had gotten the vaccine. Now I have some measure of comfort that if I were to get it,  I won’t die, or have to go to the hospital. Those are big things, especially for the chronically ill. We are always on the edge of a health care crisis. They always cost money. The last thing I need is one more.

I’ll continue to separate my general health from Lyme. This paradigm has, oddly enough, motivated me to take the best care of myself so that I can so I can continue to brag that aside from Lyme, that “I’m very healthy.” Diet, exercise, and positive thinking are the only controllable factors I have. If Lyme is the reason I am staying healthy, then that is one of the positive aspects of chronic illness, and that, my friends, is positive thinking.

 

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guardian

I watch over myself like the guardian of a high-powered executive. Although the pay sucks and I’m anything but high-powered, I like to think I’m a pretty good gatekeeper. So I hoard my energy, get my rest, take the various drugs/herbs/supplements that are working at the moment, take care of the everyday tasks to be comfortable, and inspect myself endlessly. How am I feeling? Good so far? I’d better do the laundry, take a walk and write while I can. Still good? Great! I can go grocery shopping or keep studying Spanish.

Most days I lie down in the afternoon. Sometimes I take a nap. Other times I lay on my back and think. Sometimes I just play FreeCell for twenty minutes. Some days I don’t get up for hours. It all depends. And when it comes to a social life, I’m more like the harried chaperone of a future princess who would rather screw the stable boy (I know this is sexist and old-fashioned, but I can’t come up with anything better at the moment). Literally the only two people I will drop everything for are Dad and Katie. Everyone else will have to wait. Don’t fret, I don’t make people wait for long, unless I’m really sick and have turned off my phone and turned out the lights. Otherwise, at the very least I will text: Not feeling well. Talk to you later.

Needless to say, this looks a little hinky if you don’t understand what living with a chronic illness is like. It strains old friendships and puts a damper on new ones. But I’m the guardian of this body and mind for as long as I’m alive, so I have to be vigilant. And the one thing that gets my hackles up is when anyone thinks this is a choice. If by “choice” you mean conscious decisions to not expend energy that you don’t have so you don’t feel terrible, then yeah, it’s a choice.

The difficult part is acknowledging that some people require more of your energy than others. That’s good and bad. Sometimes the person works with you and you dread interactions because it is exhausting. I know plenty of people who feel that way about their parents. I have friends I love to be with, but we have so much fun that again, it can be exhausting. I don’t like this new habit of weighing every single activity and social interaction in units of exhaustion. The very act of sifting through all of this takes energy.

That’s another thing that’s hard to explain. From an outsider’s perspective, it looks like I’m doing fine. “Well, you took a walk this morning and attended a Zoom class, and you don’t look sick” means that I am doing a great job managing my energy. What they don’t see is all the things I didn’t do so I could do those two things.

One of the many ways Lyme sucks the energy right out of you is through social interaction. Texting is great. Emails are great. Talking on the phone is problematic, depending on how I feel and who it is. Zoom calls and classes are stimulating and tiring. Seeing people is always exhausting and I have to weigh what else is going on in my life before I commit to anything. If I have to go grocery shopping and then see a friend for lunch, it is near impossible to see people later, unless I’m looking forward to doing nothing for a few days.

I fight with myself a lot, the guardian clashing constantly with the part of my brain that wants to do whatever it wants. ‘Go ahead,’ it says, ‘eat that gluten-filled pizza/swim another 500 yards/go see that friend/take another writing class/go out late with friends/quit being such a BABY’.  The guardian steps in and reminds me that this might not end well. Sometimes I simply don’t have a choice, it is something that I must do, like travel between Tucson and Denver, or go to the doctor. Then I make sure I have blocked off plenty of time before and after to rest.

This strategy means that currently I am more well than sick, the relapses farther apart and less severe, the recoveries, if not easier, more bearable. This is good, right? Mostly, except when well-meaning people comment that ‘now I can get back to normal.’ It used to vex me, too, this idea that I’m doing so well I can go back to how it was before. But that’s the whole fucking point! This is my normal now. I will always be forced to plug any activity into the energy formula. If I don’t mind anymore, why does it bother other people so much?

I would argue that it is precisely this energy output strategy that has led me to my current state. The tougher my guardian is and the more time I spend taking care of myself, the better I feel. Now that I have given my guardian full control, taking care of me first has become easier. I still argue with her. However, I know my guardian is the one I have to respect. She is one mean bitch, but she always has my best interests at heart.

 

 

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curmudgeon

Is there a word for female curmudgeon? The formal definition is a “bad-tempered person, especially an old one” and is unisex. I’m not one yet, but I’ve been flirting with the possibilities of allowing myself the luxury. This would require energy, maybe more energy than the daily decision to find something good about the day. That is the choice these days, isn’t it? I don’t know about you, but most days find me on a roller coaster of highs and lows that I’d rather not experience. I’m more of a lazy river kind of gal, and yet the universe has strapped me onto the Tower of Terror.

Pre-COVID, I would have done some the things that kept me cheerful while sick with Lyme: museums, movies, visiting friends, and the occasional trip. This is by no means the whole list, but it’s the one most affected by COVID. Joni Mitchell had it right, “you don’t know what you got ’til it’s gone.”

I have deep, strong inner resources. I’ve had to, with the challenges life has thrown me from an early age. This isn’t the place to get into that, but those of you who know me know that no matter what, I manage to see hope and joy in anything. Lately, though, curmudgeon-ness, or at least the freedom to let oneself become a grumpy hermit, happier alone than with people, is quite tempting. There is a word for this. It’s not even German! Apanthropy: An aversion to the company of men; a love of solitude. I suppose we could quibble about the use of ‘men’ in this sentence, but you get the gist. That’s what I’ve been experiencing, and it’s blossomed under the rich fertilizer of COVID.

The main problem with this scenario is that I’d actually have to say really shitty things aloud. I think this is one of the requirements to becoming a full-fledged curmudgeon. It could be this is why curmudgeon is associated with men more than women (don’t fight me on this. You know I’m right).

Although I care much, much, less what people think of me, it is not in my nature to hurt people, whether they are strangers, friends, or family. This may prevent me from earning the title curmudgeon. I’ll never say never, though. I could become one of those mean old ladies who says exactly what they think.

The pandemic has been hard on virtually every person I know. It doesn’t seem to matter if you are angry at having to wear a mask, or sad that you have lost loved ones, or sick of being isolated, or missing loved ones. I’m not sure any of us can comprehend what we’ve endured yet. I do know it has made me less tolerant. Things that would just slide by irritate the hell out of me, and it doesn’t seem to matter who or what it is. I’m positive I irritate the hell out of people, too. Our national zeitgeist is one of emotional exhaustion. I just had a head start on everybody else.

Most people are new to social isolation, being alone with themselves, or being forced into sharing close quarters with the same people for days, weeks, months on end. Our ability to move, to go anywhere is one of the privileges of living in a wealthy democracy.

Six years ago Lyme forced me to re-evaluate this privilege, but I was no stranger to being alone. I have always been content to be alone, and as the youngest child, that is a good thing. Both of my brothers were out of the house by the time I turned thirteen. My cousin Ginger lived with us for a few years after her parent’s divorce, so it was the two of us for a little while.  From my sophomore year on, Mom and dad worked full time, so I was alone before and after school. I reveled in the  solitude, happily eating dessert for breakfast, blasting my music and dancing with no one to bother me. I was never afraid, because at that time we had Charlie the Great Pyrenees who would have killed anyone who threatened me. I don’t say that lightly. Anyone who knew me then and came to my house could tell you how scary he could be.

I’m sure I was lonely at times. Who isn’t at that age, especially if it was a Friday night and you thought everyone else but you was out having a magnificent time. But even then, I had things to do. I read voraciously. I listened to music constantly. I tried sewing occasionally, and I baked things when the spirit moved me. I didn’t mind my own company back then and I don’t mind it now.

Then I got Lyme. Or rather, I’d had it for over a year and didn’t know it. When I started treatment, I was so sick I barely noticed my isolation. The first three years were the worst. I’m sure I lost friendships over this period, because virtually all of my energy was consumed with taking care of myself. I may have been a little prickly during this time. Really, who could blame me? People had no idea how I could be so sick for so long. Reconciling myself to chronic illness and trying to educate the people around me made me extremely grumpy.

And I grew used to being alone. Not just, you know, a day or two, but days and weeks of alone. I anticipate that the biggest problem for me in life after COVID will be returning to a social life, as in, will I want to? It’s hard to imagine the anticipation of going to, say, a new exhibition at the art museum, or a concert at Red Rocks. I’m pretty sure I’ll be excited over these things once again, I just can’t quite picture it. For now, though, I’ll put my scanty reserves into holding my tongue and trying to see the positives.

 

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Stalled

I been holed up lately, because there’s not much to say right now. Yes, I’m still sick. No, I don’t know if I’ll ever be completely well. No, there’s really no clear path or prognosis for me. Yes, it sucks. The uncertainty and grind of being sick for so long has started to wear me down a bit emotionally. Since I can’t change the fact that my future is not predictable or stable, I have to change the way I look at it. This is euphemistically called ‘adjusting my expectations. What a loathsome phrase. We all know it really means ‘tough shit, your life is not the same, it’s never going to be the same, and you’d better fucking get used to it’.  After four+ years of Lyme, I am stuck in the ‘almost well’ category. Why? Who knows. Maybe I’m not trying hard enough. Maybe my body reacts to things differently. Maybe there are other factors in my environment. Maybe I’m one of the unlucky few that just can’t quite get well.

It doesn’t really matter at this point, the adjustment has to be made. I’ve been working on accepting that I managed to get a serious illness since the onset of Lyme. Lyme keeps moving the bar and fucking with me. I get better, something pops up, I get sick again. What is truly mind-boggling is how obtuse I can be to the cycle.

It’s a level of stupidity that I can only ascribe to both Lyme and my own inclination to turn a blind eye to bad things. The signs are all there: I forget dates, I’m exhausted, I cry at nothing, I can’t concentrate, my neck hurts, my hands throb, and my teeth hurt. The same damn things every time and still I’m blindsided when I have another relapse.

After that, I accept the fact that I have to hoard my energy, and always plan for the worst. It makes my social life unpredictable and my working life difficult, but I do it, and without too much fuss. Emotionally, though, I struggle every day with adjusting. This is where I stamp my foot an scream “but I don’t wanna!” Lyme doesn’t give a rat’s ass what I want.

Picking which adjustment has been the hardest would be impossible. Is it that I can’t work full-time? Or maybe that I can no longer just up and do something. Perhaps it’s the uncertainty that if I DO do something, I might not get out of bed for a few days. It also could be how weak and puny I feel about myself when I get sick once again, as if my body is betraying me again. Maybe it’s the guilt I feel about constantly cancelling out on friends, or ignoring their emails, texts or phone calls because I just can’t summon the energy to talk to them like a normal person. It could be all these things, but I think the main thing is if I adjust, I am admitting I am an irrevocably changed person from Lyme disease.

For one thing, my life is much quieter than it was. It is amazing how having to parcel out your energy gives you a laser focus on what you want or need to do. I suppose I could blow off taking care of the house for a more active social life, or I could give up everything else and work full-time. Or I could simplify my life until I only have the essentials and free up time from maintenance for something else. Most people have to make some of these decisions, but not to the extreme that I do. When I decided to celebrate Thanksgiving and my birthday, it took four to five days beforehand devoted to resting and taking care of food and cleaning. Even then, I was knocked out the Sunday and Monday after Thanksgiving and my birthday party. It is ridiculous, and I hate it.

However, hate is an emotion that wastes a lot of energy. In fact, all extreme emotions use up energy. Love, hate, sorrow, anger, all suck the vitality right out of you, so they are best doled out in tiny portions. Bonus: I don’t have the energy to sweat the small stuff.  It’s been tremendously hard to wrap my brain around the various labels ‘adjusting’ conjures up: disabled, chronically ill, and malingerer come to mind. Once I get over that, I might be, no, I will be in a better place. If I know this to be true, then why is it proving so difficult?

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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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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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