Tag: coping

decompression

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I think I may be decompressing (or falling apart) after an incredibly busy and stressful summer. Now that I am healthy more than I am sick, I chose to cash in on my home and simplify my life. Sounds good, right? Well, I know moving. I have moved forty times in my life (this was my fortieth) and bought and sold seven houses. This was my eighth purchase, so I know the process. This was the most difficult move I have ever made, for several reasons. First, I radically downsized. Although I was more than ready to do so, it is a long, difficult process, even for someone who regularly goes through and gets rid of stuff, like me. Second, the market in Denver is absolutely off the hook. Selling a house is easy-peasy. Buying a house? Extremely difficult. Third, and the most challenging, this move represented moving on with life into the unknown.

Downsizing is an emotional journey whether you want to do it or not, especially after forty+ years of acquiring things. If I’ve done it right, I won’t miss anything that I let go. So far, so good. I do feel much lighter. The possessions were literal baggage; relics of a former life that is gone. What surprised me was how difficult getting rid of possessions are post-COVID. No one wants anything now. It took one estate sales, two donation pick-ups, and a listing for “free stuff” on NextDoor, and one junk pick-up to get rid of everything we wanted.

Buying a townhome was just as stressful as getting rid of things. We put bids on three properties before we found “the one.” After all the drama with selling and downsizing, once our bid was accepted, that part was surprisingly easy. They even moved up the move date by almost three weeks, a welcome event, because we were living in a stripped-down work site. Oh, did I mention I had to do a nearly $20k repair for the sale of the house? Well, I did, and that was a HUGE hassle. In the end, Katie and I purchased a townhome together. I’ll be there part-time, so it is definitely more “hers” than mine, despite the hefty down payment I made. She is extremely happy to have a mortgage and an asset. I’m extremely happy I don’t have to worry about a big house and yard when I am not there.  And yet, I am having trouble letting go of the fact that I am mistress of no home right now, but more of a guest, both in Dad’s house and now Katie’s. It’s a strange feeling, despite how generous they are. Neither mind letting me take over the kitchens while I’m there. I have my own spaces in both homes. And yet I struggle, even though it is what I wanted. 

The third point is the stickler right now. Wanting to be unencumbered and being unencumbered are two different states. Perhaps it is becauseI haven’t had enough time (really, since 2013) to work through all the major changes in my life. Divorce, graduate school, and Lyme, one after the other, in quick succession. Caveat: if you who think being sick is “downtime”, I know you’ve never been seriously ill for any length of time. As I’ve said before, being sick for long periods of time is a really shitty job. It’s hard, hard, work, and when you’re not sick, you’re frantically playing catch up. That was part of the reason I have voluntarily set myself adrift. The less I have on my plate means less catching up.

Without that ceaseless cycle to occupy me, I’m left to decompress. The first week back in Tucson was filled with getting Rocky and myself settled, and taking care of things around the house for Dad. The second week I got myself caught up with all the online minutiae of changing addresses, getting finances in order, and establishing a schedule. That only takes up so much time.

People, I’m here to tell you that decompressing and having the time to process huge life changes absolutely blows

Humans will do almost anything to avoid their own emotions of sorrow, rage, and regret and I am no exception. I don’t want to think about all the things I’ve dealt with. I find myself flitting from what I should be doing to mindless doom-scrolling and game-playing. At what point do I declare an end to decompressing and begin thriving again? I know what my therapist would say: there is no timeline for this journey. He would say I need to recognize that I have been through over six long years of being more sick than well. He would tell me I need to be kind to myself and relearn how to manage my energy and my life.

But for now, it means flitting from task to task, never quite able to fully concentrate on anything. It means struggling to give myself permission to do things just for me that aren’t related to getting better or surviving. I have to figure out where the line between self-indulgence and self-care is.

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restless

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I’ve moved enough times that there is a rhythm to each move. There’s the relief of deciding to sell the home and move. Then the flurry of activity necessary to get the house ready for selling. I had a head start on this house, because before COVID I had considered selling and got rid of a bunch of stuff. That was a great help. After that, there is the wait for someone to buy.

That’s where the rhythm sped up. I’ve never sold a home in a market like this one. It sold in three days. We only had one bid but it was the right one. Our realtor wisely negotiated for a sixty day close and an additional sixty day leaseback. Because the corollary for a hot seller’s market is a tough buyer’s market.

I really like our realtor. I hav known him for seven or eight years through swimming. He is a good swimmer, and I either swam a few lanes over in a slower lane or was lifeguarding while he swam. Showing up at a pool at 5 am, sleep tousled and in a bathing suit to voluntarily swim a few miles tells me a lot about a person. That’s how I knew he was a realtor, and it’s also how I knew I could trust him to be reliable and trustworthy.

I think it takes a certain type of personality to be a great realtor. You’re not so much as selling something as guiding someone through one of the most purchases most of us ever make. You have to get to know what the person wants, yet make it clear what they can have. You have to explain strategies and pitfalls and advantages and all sorts of terms. My daughter is a virgin home buyer, so a large part of our realtor’s job is to explain the whole process to her. Our realtor is pathologically cheerful and patient, and has done all of the above, and more.

So we have a contract. I’m working on all the problems of making repairs, which is always a hassle and has its own peculiar rhythm. In fact, everything about a move is a “hurry up and wait” kind of motion. Some days are spent worrying if you’ve done the right thing and other days are seemingly consumed in a flash with phone calls, appointments, and paperwork. If I add watching the Olympics or writing into the mix, it makes getting anything else done extremely difficult.

What I’ve discovered about myself is that I can no longer juggle multiple things and push through a hectic day without paying the price. I lose my train of thought on one thing when I’m interrupted and can’t get back on track. I fall asleep at eight pm and sleep until six but I don’t feel rested. What level of stress can I handle now? I guess I won’t know until I’ve tested the limits, and this move is proving to be the perfect situation.

I miss the rush of having a jam-packed day of chaos and knowing that I dealt with all of it. Katie and I were talking about the time she went back to her second semester of school in January 2005 and discovered that Pikes Peak Community College had a Zookeeping degree program. This was what she had been looking for. She withdrew from Mesa State, I came and got her, we drove to Colorado Springs, enrolled her in the program, found an apartment and moved her all within three days. I doubt I could do that now.

When we moved to this house I got the house in Evergreen ready between December twentieth and January fifth. Katie and I packed over 85 boxes. I also found a new house all before I left for Bennington, VT on January thirteenth for my first term of graduate school. I was still negotiating the contract on the shuttle bus from Albany to Bennington. When I returned ten days later, I had seven days to finish packing, close on both houses, hire movers, and move in February second. I know I couldn’t do that now.

This move is dragging out, though, because of the craziness of the market. I have started thinking about packing, but it’s too soon. Besides, I am getting rid of at least half of my stuff, maybe more. But that depends on where we move and how much space I will have and how much space Katie will have. Because this will be primarily her space, not mine. I’ll be a co-owner but not here for the day-to-day living. I’ll be in Tucson for a while, then I’ll be all over the place, I hope. Eventually I hope to live somewhere outside of the US for six months each year and travel to see friends/tennis tournaments/for pleasure for weeks at a time. It’s funny, that doesn’t seem daunting at all. Because I will have total control of my travel times, recovery times, and when I come and go. I won’t have to clean the house, or do yard work, or deal with all the everyday things that sap my energy.

The end result of all the chaos of downsizing my world will be worth it, though. A much smaller property which means much less upkeep. I’ll have a co-owner I can trust who happens to be my daughter. She is thrilled to finally be a property owner. A smaller payment, which means more money for living. And lastly, a great shedding of things from a former life. Time will tell if that will be liberating.

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pot

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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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guardian

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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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resettling

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I railroaded my dad into letting me move in with him this past September. It seemed like a good time with COVID and lockdowns and my continued journey with chronic Lyme. The original plan was to sell my house, move in with dad for a while, and later on, move to Costa Rica. Then came COVID and a radical change in plans. I kept my house. Katie is living there and taking care of everything. Keeping the house  was more of an emotional decision than purely financial. It didn’t  (and still doesn’t) seem like a good time to take risks.

Isolation was wearing on everybody by this point. I had stopped writing, unable to draw on any of the emotional and mental strength writing requires. I was sick of Lyme, sick of COVID, sick of myself. There was no life-guarding or teaching swim lessons.. Airbnb had ground to a halt. Strangely, none of these things particularly bothered me. Trying to help dad solve his everyday problems with his computer, or his phone, or some mail he received, that bothered me.

It would have been about time to go for a visit without COVID. The more I thought about it, the more I realized that I should be down there for a much longer stretch of time. Not anything concrete or pressing, just a feeling that we could, and should help each other through this time.

My best friend Laura ( I can say that, right, Laura?) needed a break from sheltering with the four males in her household and offered to drive me down to Tucson. We set out the day after a freak September snowstorm and arrived in Tucson late in the afternoon the next day for my 14 day quarantine. Our first place was a tiny condo across the street from dad with NO WIFI. I cannot stress this enough. NO WIFI. We got another place and saw my dad every night outside with masks on.

I moved in the house on the 15th day. Dad had cleaned and moved his office out of the room next to my bedroom. This visit was very different from earlier ones. We were going to co-exist for a long time. I truly appreciate his willingness to turn over parts of his house to me, allowing me to make them functional for myself. There was another person in the house, though. My mom has been gone for ten years. Most everything has been left the way she liked it. I helped dad go through a LOT of her things after she died, and we got rid of the things that accumulate in illness and old age: blankets, medical equipment, assorted kitchen things that haven’t been used in years, and knickknacks that must have meant something to someone at some time. We never really moved any of the furniture., though Dad had moved a few items out of his bedroom and rearranged the den and his office, but that was it.

This was more cataclysmic. My mom was precise. Not house proud, exactly. Everything had it’s place for both aesthetic and utilitarian purposes and it was to be kept like that. I felt like I was thirteen again, rearranging my room late at night, knowing mom would not be thrilled.

The kitchen was where I started first. Dad, like many widowers, had adapted to a simple kitchen routine: coffee, OJ, English muffin and sausage for breakfast, granola and milk or a sandwich for lunch, and either crackers, cheese and fruit or a frozen dinner for dessert. He used few of the many things in the kitchen. I started small, rearranging the pots and pans and cleaning out the pantry. Then I forged ahead and went through the cabinets. So many mysteries! Why were  there so many mismatched storage containers and lids? Why did we have three candy thermometers? And the biggest mystery of all, why did we keep spices from at least the 90s?

There must have been about thirty containers. I took a photo of some of them. Note the labels and prices. When was the last time you saw any spice for .57¢?

After I cleaned out the spices, I found it easier to change things in the house. I’ve rearranged my bedroom and office. I’ve added plants. The pantry and the fridge are well-stocked, just the way I like it.

We do pretty well, all things considered. Dad’s small retirement community has been and is very isolated, the threat of COVID moving through the community a powerful impetus to not gather or go out. Zoom classes don’t come close to filling that gap. Sometimes, like in my Spanish class, it highlights the differences in how people act during COVID. The three people under thirty have done the bare minimum in terms of isolating and social distancing. They talk about their travels and adventures while the three of us over sixty listen. We don’t do much at all, except go to parks or drive to pick up groceries, or go to appointments that can’t be avoided.

Sometimes I get frustrated when I see how differently people act during the pandemic. I can’t work up too much anger, though. I would probably do the same if this happened when I were much younger. It seems to me that it’s easier to hunker down at home and keep busy when you’re older.

At any rate, I can’t control what other people do. I can only control me. So I write, read, hike (a LOT), cook, clean, and keep trying to learn Spanish. I get depressed, I have relapses. I try not to think about when everybody else goes back to normal and I’ll still have Lyme to deal with. I think about letting go of the illusion of control to gain control, a futile, koan-like pursuit that so far, has not given me any intuitive enlightenment or tranquility.

I have done everything that I can do to protect myself and Dad from COVID and from the crushing loneliness self-isolation brings. Next week the Australian Open begins and we’ll watch tennis together, something we’ve both missed far more than I would have thought pre-COVID. We’ll continue to do our best to get along. I’ll ponder the fact that I have become my mother about many things. And then I will return to what I’ve learned best in the last six years with Lyme: the full-time business of coping.

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sequestered

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There’s a difference between quarantined and sequestered. Quarantined means YOU have the illness. Sequestered means I DON’T WANT THE ILLNESS. I’m back to where I was three years ago: stuck at home being sick. Bartonella, one of my co-infections, is the bane of my existence. Borrelia burdorferi and babesia have been contained (not eradicated, contained). Not Bartonella. It continues to rage inside of me, hiding and dodging despite our best efforts. So I’ve started a new medication, Rifabutin, a powerful antibiotic used in AIDS patients as a prophylactic against mycobacterium avium complex (whatever that is, it’s probably deadly if you have AIDS). In Lyme patients with Bartonella, Rifabutin has proven useful in recalcitrant patients like myself. The bacteria hides in white blood cells, where other medications can’t reach. Rifampin kills the bacteria, and also the host white blood cells. This means that my WBC count is going to drop. A lot.

Because I’ve taken quite a few drugs with nasty side effects (mainly related to the liver), I wasn’t worried at first. I texted Katie and bitched about the cost ($484!). When I got home, Katie read the drug warnings on the package. She didn’t like the sound of this one. If I get sick, I could get very, very sick, and if the illness is serious enough, possibly die. My doctor warned me of these things, but I glossed over the warnings, because what choice do I have, really? I can feel shitty most of the time or I can take another shot at feeling better most of the time.

In my last blog I wrote about Bartonella’s nasty symptoms, and they have not improved. I feel disconnected from my own reality, as if I am watching myself exist. Panna Naturopatich describes chronic Bartonella very well (http://www.pannaturopathic.com/bartonella-treatment), along with treatment options. Feeling disconnected from one’s own life is a strange, disturbing feeling, and I want it gone. That’s why I’m willing to take Rifabutin. That’s why I’m sequestering myself at home for the next 4-6 weeks. I cannot risk getting sick.

Katie strongly urged (okay, insisted) that I sequester myself at home until we know just how low my WBC will drop. She’s right, as are the two medical professionals I know who also advised me to be very careful when I explained my situation. I’ll get a blood test two weeks after starting Rifabutin. I’m a little over one week in. Friday was my last day of work for a month, and I’ve stocked up on groceries.

I like the word ‘sequester’ as opposed to cloister, cut off, insulate, withdraw, close off, or segregate. I don’t really mind hide, or the more philosophical enisle, or island. Secrete just sounds wrong, and draw back is too close to the truth. I have drawn back, for both my mental and physical health. I’m cocooning, without the promise of emerging better and more beautiful, or the coziness and growth cocooning implies.

What will I do with myself? I guess it depends on how bad I feel. The first week was rough, as it often is when I start a new medication. My body is worn out from fighting recurring flareups and die-offs. If earlier herxes are my guide, there will be many days where I won’t feel like doing much more than playing games on my phone and lying in bed. When I feel okay,  I’ve got yard work, reading, writing, binge-watching TV, cooking, and cleaning. I can walk the dogs in the park if I stay away from people. I just can’t go to public places where lots of people congregate. That means no Rec center,  no movies, no going out to eat, no library, no grocery store, no writing classes, and no volunteering. I’m sure some people would shudder at the thought of not being able to go out. I’m not one of them. I’ve long joked I would make a great astronaut, because I have no problem being confined to small spaces for a long time, as long as I have things to do.

This is one of those times where I have to view Lyme as a full time job. I am making the transition into accepting that Lyme is my full time job now, its shitty, erratic hours and insane demands on my life crowding out everything else. Once I look at my voluntary sequestration that way, things become much, much easier. This is not, once again, a ‘poor me’ post. This is a reckoning with a new drug and the possibility that Lyme might be with me forever. I am learning to deal with it, in much the same way I deal with any setback; imperfectly and less than enthusiastically, I will inch forward until it’s over.

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mental

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I’ve been thinking about suicide a lot lately. Wait, don’t panic! Not in a real way, but in a Lyme way. There is a difference, and it is significant. Psychiatric problems from Lyme are well-documented and common. After all, there are, quite literally, bugs in your brain, wreaking havoc. So when I say I think about suicide, there is a layer once removed from actual thought of suicide. My recent psych problems dovetailed with an article I recently read about a family who has five sons suffering from Lyme. One took his own life. He was twenty-four. https://www.lymedisease.org/touched-by-lyme-when-the-perfect-storm-is-too-much-to-bear/

For me, the jags of crying, depression, anxiety and suicidal thoughts are  unwanted  surges in an unwell brain. The trick is to hold on and wait until the storm subsides. You might ask how I know this to be true. I’m not sure why. It could be a product of age and a lifetime of introspection. If I were much younger, or not used to examining my thoughts, I might think this was a real crisis. I’m not saying I haven’t felt depression and anxiety as true emotions. I have. The nature of Lyme neurological problems gives these feelings a different flavor.

When the surge subsides, it is though it never happened. There is no residual fallout, nor is there guilt, or lingering thoughts, another reason I know they’re not real. The inflammation Lyme causes acts as an electrical probe that homes in on the parts of my brain where emotion lives. It is more annoying than anything. A thought will pop up, unwanted and unconnected to much of anything (unless I’ve been on Twitter reading about the GOP and Trump), and lodge itself in the forefront of my brain for a few hours or a few days. I will cry at nothing. I might watch a cheesy movie, or watch videos like people reuniting with their dogs to help release the tears. It is a physical, not emotional reaction when Lyme is the cause, and I feel relief after crying. The depression/anxiety part is exceptionally frustrating. In the past, pre-Lyme, I sometimes got mildly depressed, and very, very occasionally experienced anxiety (like before my graduate school lecture, duh) but never in an irrational way. If you suffer from either of these regularly, wow. You have my deepest sympathies. My anxieties drift into obsessions, like buying lottery tickets or never leaving the kitchen dirty overnight. They don’t make sense, but it’s easy enough to pick up tickets or clean up.

I have never, not once in my life, thought seriously about suicide. I would go so far as to say I didn’t understand why anyone would want to take their life, until one cold February day two years ago when I was extremely sick, and had been for over a year. I realized I could easily reach a point where I wouldn’t want to go on if I knew I would never feel better than I did that day. This newer phase of neurological problems is more abstract, less direct and real. I’m not explaining myself well here. All I can say is that the flashes come and go quickly, and they don’t touch me deep inside. I’ve moved from being upset about them to being intrigued. What is happening in my Lyme brain? I’d love to have an MRI while I’m in the grip of what I call my Lyme neuroses/psychoses.

This is NOT a cry for help or a ‘poor me’ moment. It is an attempt to explain one of the more bizarre Lyme disease symptoms. I’m not embarrassed to talk about this the way I would be if I didn’t have Lyme (and that’s a whole other topic, why most of us would rather talk about our sex lives or money than admit to suicidal thoughts, anxiety and depression). It’s one of the dozens of strange things that Lyme does to my body, like my aching teeth and liver today. I didn’t recognize what was happening at first. Once I did, he imagery that came to my mind is from an old Star Trek movie, the one where Khan puts a worm in Chekhov’s ear. https://youtu.be/3i42Smtbmeg

Each reaction in my body becomes something I deal with. My coping skills have moved into gold-medal territory by now, honed by injuries, endometriosis, surgeries, and now Lyme. As for these particular symptoms? Marijuana blunts them, housework makes them bearable, and sleep removes them entirely. I cook, or watch stupid TV, or rage against Trump and the GOP on Twitter. I drag myself to work and forget about Lyme for a short while. I go out with friends if I can, and listen to their lives. I walk the dogs. I write obsessively and badly. One day I’ll wake up and my brain will have regained its’ equilibrium and clarity and I’ll get back to fully living for a while until the next cycle comes. Then I will go back to my mad coping skills until the storm passes once again.

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Stalled

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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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doublechecking

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

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

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

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

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

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

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

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

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

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fractious

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I am scratchy and irritated these days. Is it the nature of healing? Is being constantly annoyed a sign that I’m getting better, and if so, why? You’d think I’d be all happy and excited, and I am, but I’m also fractious. I curse at all the drivers on the road, loudly and often. This isn’t new, anyone who has been in a car with me knows my predilection for cursing at other drivers. What’s new is the vehemence and frequency, the lack of control I have over my rage.

One of the symptoms of bartonella, the last co-infection to die, is irrational anger. I do have that, and I don’t like it. This fractiousness is more an angry restlessness at my life, what I’ve lost and how much farther I still have to go before I’m well. It’s also frustration at how hard it is to pick up your life again, especially when it dawns on you that you can’t go back to what isn’t anymore. So now I have to move forward, whether I want to or not. It’s scary, and I don’t like scary. The whole thing exhausts me!

It’s also getting harder to comply with the Lyme protocol. I don’t like answering questions about how I am. People look at you like your doctor is exploiting you, or he’s making up your treatment as you go along, because it’s always something. That’s Lyme disease. In a sense, he is making up my treatment as we go along. Every case is different, because every tick bite is made up of different bugs. We get misdiagnosed, under-treated (2 weeks of Doxycycline? Please, bitch!), and denied treatment by insurance companies who believe that anything over 30 days of treatment is uncalled for. No wonder I am fractious. It’s a miracle I’m not starkers. Wait…oh yeah, that symptom is mostly over.

In a way, I like the irrational anger. I am not prone to irrational anger. It’s almost fun to blow up, at least in private. I can now imagine what angry people feel all the time, the release of…what? I’m not sure I know what is being released, only that something loosens inside when venting, and the pressure backs off a little. To turn this rage on another person would be unthinkable to me, though. I contain myself to screaming at nothing. Once, however, I screamed at the dogs. I NEVER do that, even though I’d like to sometimes. That one scared me more than anything.

There is a lot of yelling going on in the world today. A lot of anger and distrust. I will not be a part of it. Listening to an angry person is a soul-sucking endeavor. A part of this fractiousness is an impatience with the world today. I don’t have the time or energy to put up with toxic people. At the same time, I have to participate in the world, such as it is today. I often wonder what we will call this new era. The Age of Hypocrisy? The Age of Rage? Whatever history dubs it, it won’t be flattering, that’s for sure. So my small part will be to keep my grumpiness to myself. It’ll be tough. Curse words will be used liberally while I talk to myself. Cleaning, music and hiking will be my anodynes. I hope. If any of you catch me bitching, slap me, please.

 

 

 

 

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