mental

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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RomComs

I can always tell when I’m feeling better. First sign is a manic frenzy to get my life “back on track”. I play catch-up and start to think about the future. That instantly brings on depression, anxiety and panic, so I try to balance it out by watching romcoms. I like romantic comedies. A LOT. The smarter and funnier the better, but I’ll settle for a cheesy Hallmark Channel movie, too.

I’ve yet to see one where the chronically ill hero finds the love of their life. That’s a plot that could go wrong in so many ways. Meeting another chronically ill partner? Oh, great, two sick people shlubbing along together, finding happiness in spite of barely living. Or one person “saves” the other, making life worth living. Yechhh. Or maybe the sick one keeps their illness a secret, but when it finally comes out, the healthy one finds they love the person no matter what. Right. That’s a totally true story, happens all the time.

The problem with all these scenarios is the chronic illness. Like a third wheel, it’s there, along for the ride whether you want it or not. I don’t know what the dynamics are for stable couples when one finds out they have a chronic illness. I’m sure it’s the same as everything else: some partners bail, others rise to the occasion, but most probably grope along blindly, trying to figure out what to do as problems arise. I don’t have that right now. I have Katie and Dad, of course, but they are family, so far from a romantic partner that it’s no comparison.

Well-meaning people in my life worry that I’m not happy being single. Well, I’m not always happy, but that doesn’t have anything to do with not having a relationship. Maybe they can’t imagine being alone in their own lives, so they project their own fears of being alone onto single people, . In many ways, most ways, in fact, I’m much happier alone. For some people this is simply impossible to understand, especially people who know that I love men and flirting. It’s true, though. How much of this is due to Lyme and how much is due to personal evolution is difficult to discern.

Romcoms often bring up lots of emotions for me after the ‘high’ from the always happy ending, most of them cynical. I mean, at the heart of every romcom, regardless of how the writers frame the story, lies the fantasy that there is true love for everyone. That’s not true, it’s never been true. Is it a modern promise that can’t help but make most of us disappointed? Or is the modern standard so high that romcoms have to exist to keep the fantasy alive? Or maybe they exist in the same territory that fairy tales and romance novels; they satisfy our yearnings to be loved.

That’s the thing people pity single people for, isn’t it? “I just want you to be happy” is code for “I want someone to love you”.  “I don’t want you to be alone” really means “I want someone to want to be with you”. It doesn’t matter how fulfilled your life is in every other area, the message is  loud and clear: you can’t be satisfied until you have that person. In the most primitive terms, it’s biology at work, making sure we procreate and continue having little humans to populate the earth. I’m certainly long past that stage. I’m in the stage where I’m supposed to be enjoying my grandkids (I’m not sure I care about that, either. Katie has never wanted kids), and romantic love is a comforting memory or a real stroke of luck.

I think I like romcoms because they always have happy endings. They often start with one or both protagonists going through the worst time of their lives, followed by the soul-cleansing moral journey of discovering what is important in life, and finishing with the satisfying message that if you make the right choices and get your karma straight, you’ll be rewarded with true love. Just writing it down makes me realize how ridiculous the whole premise is. And yet I still come back for more.

The pay-off is catharsis, a feel good moment that cost me nothing. Since my Lyme disease isn’t going anywhere soon, I need an escape that doesn’t involve alcohol, physical exertion, money, brain power, or too much effort. I tend to go through phases of feeling like I want someone, but not so badly that I’m willing to, as they say in romcom vernacular, “put myself out there”. In truth, I don’t have the time or energy to put into anybody else but myself and I am a-ok with that.

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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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retired?

What’s the difference between being retired and being useless? Staying busy or taking up space? Is there a magical moment where one moves from one column to the next? I’ve been pondering these questions as I cobble together ways to feel useful and productive with the erratic uncertainty of Lyme. I am terrified of being seen as useless.

There is a lot of talk these days about “personal responsibility” and not wanting to pay for “able-bodied people who can work.” This presents me with a dilemma. Do I make myself sicker to assuage the scarlet letter of being useless? Or do I take care of myself and continue to chip away at my inheritance? I’m not costing anyone but my future self a damn dime. I don’t have insurance. I pay cash for all my doctor appointments and medications ($15k and counting). I am on no assistance. So why do I continue to beat myself up about this?

I do work. I lifeguard. It is low-key (except the .1% of the time when you’re faced with a medical emergency) and I can make my own schedule. I am an Airbnb host. Neither of these jobs pays the rent. They give me structure that I can manage and something to do for money. Cleaning, shopping, gardening, writing, socializing and working out take up the rest of my time, in that order. Some days I have to drop some or all of these things. Big deal. I deeply resent the idea that you have to ‘earn’ the right to be useless in America. First of all, being useless in America means not getting paid. Every  stay-at-home parent knows what this is like. We don’t value certain jobs as much as others. We vilify the working poor. We especially abhor people who don’t carry their weight.

Second of all, things happen. Illness, bad luck, poor choices, economic downturns, anything, really. Most of us are closer to the edge than we’d like to admit. Most of us wouldn’t last long if we didn’t have investments, savings, families, or access to a social safety net. Without my dad and Katie, and friends, I’d give myself two years, tops, after contracting Lyme disease. That makes me lucky, not worthy.

We all know people who, for whatever reason, have more trouble with this than others. I am far less judgmental than ever (not that I was terribly judgmental to begin with) now that I have Lyme. People post memes that say things like “You never know what someone is going through. Be kind. Always” on Facebook all the time. I know instantly that this person is saying, in code, that they are going through some kind of crisis. It’s important to realize that things happen to good people, bad people, and everyone in between. Sometimes it’s not their fault, and sometimes you know damn well it is. Then what?

It’s an awfully big job to decide who is worthy of your empathy and who isn’t. I know some people see me out and about and wonder to themselves ‘how sick can she be’, and I want to explain how Lyme works. When I turn 65 and still have Lyme I can consider myself ‘retired’ and not ‘sick’. Or can I? Maybe I can be sick and retired. Will I be worthy of idleness then? What if I get well and want to work. What if no one hires me because I’m too old and have been sick?

I’m not alone with these thoughts and fears. I am exceedingly lucky to not have to ask other questions, like  ‘will I run out of money’ and ‘do I have somewhere to live’. I am torn over solutions. On one hand, I don’t want insurance companies dictating my Lyme treatment, mainly because they are shitty at it. They deny and charge higher prices, so much so, that I’d rather pay cash (at much lower rates, I might add). If I was on Medicare or Medicaid, I’d have the same problems. Maybe Lyme is a special case, right now, with no consensus on how to treat, for how long, or what to do for patients who fall into the category of ‘chronic or persistent Lyme disease’, like me.

Meanwhile, I struggle to maintain a balance between self-care and usefulness.There are things I have let go without my knowledge. Through a stroke of luck (Jake, it’s Jake wanting all my hours at the pool), I’ve had some extra time. I hadn’t filed papers or gone through my files in a long time. I cleaned the refrigerator and the pantry. I went downstairs and cleaned long neglected corners of the house. The acts lightened me and gave me the sweet illusion of control. I was deeply disaoppointed, too, because man, I thought I was keeping up. It was a disconcerting peek into old age—the shocking ease with which things can get way out of hand.

There does come a time when you have earned retirement. Full retirement. The kind of idleness that means your biggest decision might be whether to put on clothes. My dad is there. At almost 89, he can do whatever he damn well pleases. At some point, I’m going to have to reassess where I am with Lyme, retirement, and usefulness. I’m putting it off as long as possible, because I might not like my choices. A lot can change in a short time, though, that much I know. And sooner or later, if I’m super lucky, I’ll get where my dad is. I don’t think I’ll wear clothes.

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doublechecking

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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almost

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

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

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

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

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

 

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hope

I spent yesterday afternoon in a room full of Lyme patients. It was the first time I had been around so many Lyme sufferers. We were all gathered at the Tattered Cover to hear Dr. Richard Horowitz. For those of you who don’t know, he is a demi-god in the pantheon of Lyme doctors. He’s written two books, Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease, and How Can I Get Better: An Action Plan for Treating Resistant Lyme and Chronic Disease. His first book came out in 2013. It was one of the first purchases I made when I realized I had Lyme. I didn’t get a lot of it at the time, and I skipped over parts that didn’t affect me (I had to go back and reread some of those later, as Lyme careened through my body). I slogged through the dense science along with the case studies. And I felt hope. This book covered everything. He believed Lyme patients could get better and even thrive.

Time passed, and I started to lose that hope. Every time I felt like I was getting well, I had a relapse. “I’ve turned a corner,” I’d say. I had, too. Right into another fucking ditch. Hope slipped away because the trajectory of Lyme is not lineal, it’s  a jagged zig-zag. This is not a pity party. It’s an attempt to share how easy it is to lose sight of health.

I knew the book store would be packed for Dr. Horowitz. He is a physician in the truest sense of the word. When his patients don’t get better, he considers this not a failing, but a chance to be a medical detective. His journey as a Lyme guru started thirty years ago, in the Hudson Valley of New York, now one of the most Lyme-infested areas of the US. Hearing his excitement about new protocols was infectious (pun intended). Seeing that many seriously ill people was, in a strange way, comforting. Why do we feel better seeing others who suffer like we do? There’s that feeling of immediate kinship: this person gets it. There is also a less attractive side to this. Several people were in wheelchairs, or had to use walkers. Some of the people looked dreadful. For me, it’s less about misery loves company and more about I’m slightly less miserable than the rest of the company. Shallow, I know, but there it is.

Dr. Horowitz provided hope to the people listening yesterday. Hope may be the most powerful drug there is. Love is also important. People get better for the ones they love. The combination can be potent. I was one of the few ‘singles’ at the book signing (even Dr. Horowitz was part of a couple, he travels with his wife, a Lyme sufferer herself). There were parents and children, boyfriends and girlfriends, and married couples huddled together. I could immediately tell who had Lyme, because I was struck by how protective the healthy person was towards the Lyme sufferer. I have my dad and Katie, but I prefer to battle on my own with Lyme. Well, maybe not ‘prefer’, but that’s the way it is. No, I take that back. I DO prefer to work this out on my own, mostly. I don’t like to be coddled. There was lots of coddling yesterday.

For the life of me I can’t figure out why more physicians don’t view disease the way he does. Something happened to the way physicians practice medicine between the great gains of the early twentieth century and now. Probably not one thing, but several. The one frightening fact he pointed out is the alarming rise in chronic illnesses. Why? What are we doing about it? Chronic illness is crazy expensive on three levels; personally, monetarily, and societally. I’ve experienced all three these last two years and it is not pleasant. The cost of untreated or poorly treated chronic illness is astronomical. One girl, who is now fourteen, got Lyme when she was six. She went to over fifty doctors before she got the right diagnosis. What that must have cost her family, I can’t imagine. She was lovely, though, thankful that the newest pill Dr. Horowitz prescribed was ‘tiny’. I feel her pleasure in that. I don’t want to brag, but I can swallow up to seven large pills at once. Impressive, I know.

Anyway, today I feel better than I did yesterday morning. His message gave me hope, and hope makes me feel better. One caveat: people ask if one can be cured from Lyme. Dr. Horowitz used the phrase “knocked the load down” several times, and never said the word cure. He talked about herbal protocols to “keep the load down” if symptoms creep back. I asked him about that as he signed my book. “Is that the euphemism you use to dodge the question of a cure?”  I asked. He smiled. “For now,” he said, “but not for always.” Hope. It’s a powerful thing.

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holiday

As Christmas approaches, I am entering another year of purposely downplaying the holidays. I know, call me a Grinch if you want, but I bet my Christmas is way more relaxing than yours. This idea that holidays are the end-all be-all of everyone’s life has always rankled. My dad is notorious for disliking almost all holidays—not the idea of the celebration (except for Mother’s and Father’s Day, in his mind these were made exclusively for selling crap and making kids and parents alike feel terrible), but the way they have been hijacked by marketeers and mothers intent on torturing everyone with picture perfect spectacles that no mortal can match. In reality, except for astronomical events (solstices, meteor showers, eclipses) there is nothing TO celebrate that is real. It’s all made up. Except birthdays. Those are real,  but after thirty, celebrating  that I was one year older didn’t really make me all that happy.

Katie likes to joke that every day is Christmas, and in our family this is kind of true. We buy what we need and occasionally you get something special. While she was growing up, I made sure every holiday was celebrated, decorations, food, gifts, etc. I wore myself down trying to live up to whatever expectations I placed on myself. We all bring our personal baggage to this process, my ex and I were no exception. There was the annual holiday light fight, the drunken July 4th, the disappointing Valentine’s days, but there was also lots of fun. We made our own traditions and enjoyed them a great deal, until we didn’t. Life changes, and if you’re not ready to roll with that, holidays amplify those changes, both good and bad.

Six years ago, after my mom died, I didn’t feel like celebrating. My marriage was going downhill fast, Katie was gone, and there was nothing we needed. Oddly enough, it was a good Christmas. By not trying to live up to what I expected of myself, what marketeers, songs, and movies told me I should want, the day was quiet. We hiked, had a nice breakfast. We opened the few presents we got, everyone was content.

After I got divorced and started graduate school, the holidays were quiet by choice. All of them. Halloween, Fourth of July, Thanksgiving, and Christmas. Let’s not even talk about Valentine’s Day, my least favorite holiday of all. I’m not against holidays, I have simply discovered that there are many ways to celebrate (or not). If it was hard on Katie, she didn’t let on. In fact, she swears that she is quite happy with the way things are. We sneak off to the museum on an off day, buy each other a puzzle and have lunch. We buy our few Christmas gifts on Cyber Monday and wrap them together (Katie is a world-class gift wrapper). We are extremely close, and no declaration on holidays will alter that one way or the other.

Last year, I spent Christmas Day alone, sick with Lyme. It was no big deal, at least not to me. My dad certainly understood. Katie worked. She has worked the last three Christmases and Thanksgivings. Why not? We just pick another day to do our dinners, open our presents. The day is designated by us, not the calendar. Most people just can’t believe that I am satisfied with this arrangement. It’s kind of like my drinking friends can’t believe I don’t care much for drinking. I don’t care. At this stage in my life (almost post-Lyme, fingers crossed!), I can do whatever the hell I want. This includes not eating all the food people foist on you at each and every holiday, not dressing up in costumes, not buying unnecessary gifts, or sending cards (sorry, I’ve been bad at that since forever! But I don’t mind if I’m off your list…). What I’d really like for Christmas is to be well. What I’d like for any day is to be well. I’d also like to never hear “Grandma Got Run Over by a Reindeer” ever again, but we can’t always get what we want.

This is not an indictment of the way you celebrate holidays, nor is it an endorsement of the way I celebrate mine. I’m happy with the way things are right now. Like all things, it will change. Until then, this year is a music year. Bring on the Christmas carols! On Christmas day, however, I just may go eat Chinese food, and if I feel good, it will be the most wonderful day of the year.

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