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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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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Fears

I used to think I wasn’t a fearful person. Armed with statistics and a healthy lifestyle, illness and accidents were part of a lottery I thought I had little chance of winning. Then I was bitten by a tick. Now I see that I had plenty of fears, I just didn’t admit to them. Except for spiders. I was afraid of spiders. Now I’m afraid of ticks.  I don’t know if I will ever willingly go into actively tick- and Lyme-infested woods. Going through the last four years again is unfathomable to me.

The list of my fears is not rational. Is anyone’s? I am scared of, in no particular order, tornadoes, earthquakes, cycling on roads, drowning in the deep ocean, and losing my daughter. Oh, and volcanoes. Being encased forever in hot magma scares the crap out of me. I realize my chances of dying in a tornado, earthquake or fire are slim to none, but they evoke a primal terror inside of me, as does drowning in deep ocean waters. These fears limit me only slightly, but I would think twice before I lived anywhere along the ring of fire, or tornado alley. Now that I live in the suburbs of Denver, fire is not a real fear, but I definitely live in fire danger country.

I am not afraid of flying, drunk drivers, snakes, mice, or smaller spiders. Large, unexpected spiders make me jump, but I’m not gonna die of fright or anything. I should frightened by cancer, falling down in my own home, fire, heart attacks, strokes, and gunfire, but I’m not. I am less and less afraid of death. I do retain a perfectly healthy fear of how I die.

Getting into existential fears is pointless. Of course I’m afraid of failure, success, commitment, being alone, love, not being in love,  and why I exist at all. I’m not particularly afraid of speaking in front of people or rejection. Any sane person should be afraid of being shamed in public or shunned. I think I probably should have titled this ‘My Personal Fears’. Fears, like one’s belief system is highly personal. No two person’s lists are the same, really. I might argue that these two parameters truly define who one is.

This completely informal list of neuroses has changed, obviously. Life experiences shape one’s fears. Fears about illness and aging have moved to the front For instance, is Lyme like polio? Will it come back with a vengeance when I’m older and physically vulnerable? What if I do something foolish, like trying to descend a flight of stairs with two suitcases while I’m traveling and fall? What is I’m working in the yard and have a stroke? I never gave a moment’s thought to any of these scenarios when I was young. The slow, inexorable accumulation of insults, injuries and illnesses has changed my list.

My fear of ticks is actually grounded in statistics and science. Global warming has exacerbated the upswing of vector-borne diseases. Mosquitos, ticks, and fleas hang around longer because there are less sub-freezing days. We encroach more and more on natural habitats of the deer, mice and other animals these insects feed on, exposing ourselves to an ever growing list of diseases. There are diseases in the water and dirt around us. Houstonians know this firsthand after hurricane Harvey. Southwesterners know that Hanta virus and Valley Fever fungus live in the dust and can kill. People who live where mosquitos are know about Zika and West Nile Fever. I don’t think my fears on this front are misplaced.

With Lyme, I have discovered earlier than some people that I am terrified of losing my mind. I think I could live with loss of mobility, or hearing, but I’m not sure. I also think I could live with chronic pain, but I’m not sure. I am positive I cannot live with the loss of cogent thinking.

As I wrote out my list of significant fears, I left out the everyday fears, the ones I have carried most of my life, because I wasn’t quite aware of them. The biggest one is protecting my deaf side. I do not climb trees. I do not place myself in physically precarious situations, like bungee jumping, cliff diving or skiing. I guard that side of myself unconsciously and zealously. This is another fear, like ticks, where my fear is valid and my vigilance necessary. The other constant fear didn’t begin until thirty-one years ago, when Katie was born. I share this fear with nearly every parent, the thought that I might lose Katie before I die is always there, a kind of low-level current that trips when she’s driving late on a snowy night and I haven’t heard from her, or when she gets sick.

Lifestyle and genetic illnesses don’t scare me at all. My biggest indulgences are smoking pot off and on, depending on how sick I am, and salty chips. I don’t have a family history because I’m adopted. Aside from Lyme, I have zero health problems. No high blood pressure, no cancerous moles or heart problems. No medications outside of Lyme. I tend to feel my chances of cancer are dictated by genetic mutations and bad luck, so I play that lottery without worrying. If it happens, it happens. I’ve worn sunscreen virtually my whole life (thanks, Mom!) and have had one sunburn.

So that’s it. A somewhat incomplete list, to be sure, because I could reel off a whole other list of minor anxieties and half-baked fears. But these are the biggies, both rational and irrational. Right now, and perhaps for the rest of my life, Lyme disease remains the hulking specter that overshadows all other fears.

 

 

 

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