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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stamina

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

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

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

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

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

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