denial

I’ve never particularly been one for self-denial. Not that kind! Jeez, people. The kind where I don’t ‘allow’ myself to do things I might enjoy because I’m chronically ill. There are several reasons for this, but the main one is that over time, I have come to feel guilty for still being sick and have twisted this into a toxic “I’ll do it when I’m better” mantra. This was extremely easy to stick to during COVID, but now that the world is coming to life, I’m starting to wonder why I’ve been doing this.

As I expected, there are tons of articles about this. There is guilt, embarrassment, shame, and disappointing others, and whoa! back up…grief. I think I’ve discussed this one with my therapist, but I shrugged it off as something I’ve already been through. What if I haven’t, though, and this stupid mantra is one of the ways I’m dealing with mourning my old life. I didn’t know this, but ‘serious illness’ is #6 on the life-stress scale, after Death of a Spouse, Divorce, Marital Separation from a mate, Detention in Jail or Other Institution, and Death of a Close Family Member. I suppose I have ceased to think of Lyme as a serious illness anymore. It’s been with me for over six years now, but it’s nowhere near as debilitating as it was for the second, third, and fourth years.

Wow. Maybe I am grieving, because sometimes I forget that there were THREE WHOLE YEARS of being sick over 80% of the time. That’s crazy. I could be either beginning to grieve again, or emerging from a long period of grief. Ugh. I’m going to have to think about this.

Fortunately, I’m not alone in my journey. So many people are having trouble emerging after a year of lockdowns that there are columns offering advice on how to rejoin the world. The decisions can be overwhelming, especially if you have worries about catching anything. Can I fly? Is it better to drive? Where can I go, and once I get there, what can I do? When do I where a mask? What if someone confronts me about wearing/not wearing a mask?

Overall, I’m not particularly worried about any of these things. My fears are more existential, it seems. Do I deserve to be out here? Should I allow myself to be frivolous, to have fun? If I do, will it be my fault if I have a relapse?

I just noticed the language I used above, the words ‘deserve’, ‘allow’, ‘frivolous’, and ‘fault’: I am limiting myself, I’m not sure it matters if it’s because I feel guilty, or I’m embarrassed, or grieving. Now that COVID restrictions are lifting, there is no excuse for self-denial. I have to re-learn how to let go and do more things that I enjoy. This is different than relaxing. I have to relax and take it easy to stay healthy. But what good is a life that isn’t lived?

I came back to Denver this week for a lot of reasons, but one of the main ones was to see my Lyme doctor. I knew something was off kilter, but didn’t know what. I’ve had a return of babesia and bartonella. I asked him if it could have been something I’d done. He said maybe, or maybe they made a return for reasons unknown. I hate the feeling of bacteria, parasites, and spirochetes hiding in my body, little bombs just waiting for an opportune time to reemerge and proliferate and not having much control over it.

Babesia is a real fucker, and I’d forgotten the crippling symptoms. The main ones are burning, blurry, itchy eyes, neck pain (like whiplash bad), headaches, body aches, a wicked intermittent sore throat, drenching sweats, and constant fatigue. This one, though, is the one that gets me: migrating, unrelenting, throbbing pain in my teeth and jaws. It gets so bad that I can’t chew. I spend quite a bit of time thinking that it’s not babesia, that one or more of my teeth are truly rotting or cracked or something. That’s the babesia speaking, as there is also a mental fog/rage/OCD component to deal with. And then the pains move somewhere else, and my teeth are just fine.  All in all a miserable experience, one I was glad to put behind me several years ago. Seems that babesia has other plans for me, forming cysts in my body until the time is right.

When I’m relapsing and herxing, self-denial is the last thing on my mind, the thought of ‘getting out there’ momentarily shoved aside. On a day like today, I feel thankful to walk the dog, get through some Spanish, and take care of myself.

But like everything Lyme, I’ll take the herbs and medicines, and the flare-up will subside in a while. I will play catch up, and then I will start wondering if I should get myself out there into life. Logically speaking, if there is no predicting when I will relapse, wouldn’t the strategy be to ‘plan’ for a relapse after I’ve had a trip, or a conference, or whatever I choose to do? That’s kind of what I’m thinking about now. I’m not ashamed to admit that I’m scared. Scared of making plans and scared of NOT making plans. Both choices carry risks and neither is a guarantee that I won’t relapse and feel as awful and numb as I do right now.

I can’t live like that though, and I’m going to have to figure out a way to spin this to myself in order to move forward and live. I want to stop denying myself the pleasure of playing pickle ball, or taking a trip to see friends once in a while, or going to the movies, or even relaxing one afternoon to binge-watch tennis.I think I’ll give myself credit for recognizing my dilemma and work on stopping this self-denial and start planning for the future. When I feel better.

 

 

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flabby

My mind, body and spirit have grown flabby from Lyme. I had good news from my doctor this week. I am, metaphorically, sprinting down the backstretch. Only I’m not sprinting, I’m lackadaisically strolling, the one pace Lyme allowed. This is supposed to be good news, and it is. I haven’t figured out what it means for me yet. I was warned that this isn’t an immediate return to health. My body is more than flabby, it’s a toxic waste dump. It’s worn down and tired from three years of illness. When I was out of town with Dad the last few weeks, I got compliments on how good I looked. What a cruel paradox. I’ve never looked healthier or been sicker.

I joked with my friends in Dad’s retirement village in Tucson (yes, I’ve spent so much time there that I have my own friends there) that I live the lifestyle of a five-year-old. I also joked (but not really) that I’ve gotten a preview of the ravages that age brings. A preview, not the big show. I hope I make it to the big show. I’ll at least know how important taking care of yourself is.

That was one of the best parts of my doctor’s appointment. I have passed into that strange relationship doctors and patients have when they are brought together through serious illness. Not-quite-friends, he knows too many intimate details of my body and life to be merely an acquaintance. I see his wife, also, and I was delighted to hear from each of them that because I work so hard on my health (italics mine, because I am pretty fucking proud of myself) they think I’m going to make a full return to health. Yassss!

One of the secrets to coping with a long, drawn-out illness is surrendering to the illness. Not surrounding as in giving up, but giving in. It is, however, quite possible that I have gotten too comfortable with this skill. It’s ironic that the coping mechanisms I used to get through the last three years might be liabilities on the road to wellness. So what do I do now?

I consider myself an athlete. I have never gone more than eight weeks without working out. Whether it’s tennis, swimming, pickle ball, weight-lifting, Zumba, Jazzercise, running, hiking, or yoga, I am always doing something. I have continued this as much as possible during Lyme; in periods of relative health I swam, played pickle ball, walked and lifted weights. Each time was hard. I’ve had no stamina for two years. Getting back into shape is always a pain in the ass. I’ve done it after each of my surgeries and I will do it again now. Five minutes today, ten minutes next week. One day I’ll wake up and be working out at my normal pace.

Maybe that’s what I need to do in other areas of my life. I’ve never lost my mind before, but I’ve been working crosswords, playing Words with Friends, writing, reading again—getting my mind back into shape. Now I have to turn that mind-play into mind-work. I’ve shied away from mental work because I couldn’t handle the inevitable failure trying to perform a challenging job while I had Lyme. Now that’s changed. First step will be to devote an hour or two each day to a new, online writing job. It will seem unbearably difficult to me at first, like that first time I swim after a long layoff. I feel like a beached whale the first three or four times, my limbs flailing through the water and lungs gasping for air. Then there is a day where I slice through the water, pushing the last fifty of a two hundred without dying. I will gradually work more hours. One day I’ll wake up and realize I’m doing it easily and happily.

It’s the time between now and one day that is daunting. I’m sure I’ll push too hard, or beat myself up for not pushing hard enough. I’ll cry and get angry and wish things were different. I’ll bitch and moan to anyone who cares to listen (anyone? anyone?) how hard it is. There will be days where I feel strong and sharp and in control. There will be many more days where I want to crawl under the covers. I don’t ever want to be this sick again. Never, ever, ever.

My spirit is the weak corner of this triangle. This is one of the few times I wish I had faith in something. How easy it would be to fob it off on “god”. That’s not for me, though, I’ll have to figure out how to get my joie de vivre back on my own. It may surprise me, what makes me happy and replenishes me. I don’t have a clue at this point. Or maybe I do, but like my mind and body, my spirit has also atrophied, the energy Lyme took far exceeding my resources. What if my spirit doesn’t come back? I’m scared I don’t have what it takes to make it down the final stretch. I know, I’ve made it this far, blah, blah. If I can’t figure out how to rejuvenate my spirit, all of this will feel insurmountable.

I look at the people in Dad’s community. Some of them face what seems to me to be unimaginable hardship. They all cope with their changes differently, that’s expected, but they all share an unquenchable spirit, a thirst for life. That’s what I want. I just want it to be easier to get. Not only that, I find I really want to hang around for awhile. The world is an endlessly interesting place to be. I’ll find out what my spirit is made of, and what revives it. I’ll use that knowledge when I graduate to the big show and I’ll stay thirsty for as long as I’m able.

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acceptance?

I fucking hate babesia. Babesia is one of my co-infections, a malaria-like parasite also called a “piroplasm”, whatever the fuck that is. It clouds my mind and saps my energy. I get angry and depressed for no reason. My eyes go wonky. All the normal boring crap, too, like fatigue and muscle aches and joint pain. For once, there is no anger at this flare-up. Am I being forced into accepting Lyme? Or am I worn down with fighting? I don’t think either is quite true. Acceptance, at least for me, smacks of giving up, worn down implies defeat. I’ll settle for the gentle euphemism of “learning to live” with Lyme.

My doctor shared his frustrations with his inability (another tricky word) to predict the outcomes of his Lyme patients. He felt I should be well by now. He wonders what factors we’re missing. So do I. We discuss my lifestyle. Am I drinking? Why, yes. I tried to drink twice in the last month. It didn’t work out too well the next few days. Alcohol is off the table once again. How about rest? My number one priority. I nap most days and get at least eight hours a night. I am like a four-year-old trying hard to give up naps but too sleepy to actually do it yet. What about stress? Yes, what about stress. Oh, you mean the stress of living? There is the stress of existing, which is essentially what I did for almost two years, and the stress of living. Existing is a sealed bubble of eating, sleeping, and being sick. Living is working, socializing, exercising, going out, traveling, and interacting with the world. YES IT IS STRESSFUL! I almost always feel behind the eight ball of my own life. Do one of the things and be sick. Do all of them and feel great. That uncertainty is stressful. So is deciding which one to prioritize on any given day.

I can accept that lifestyle choices and managing stress are all on me. My doctor accepts managing my protocol. What both of us struggle to accept is what we are missing. Was it the eleven surgeries I’ve had during my life? Perhaps all the antibiotics I took for acne in my late teens. The drugs I enthusiastically experimented with? Maybe something in the environment. It sure as hell isn’t my disposition. I’m fricking Pollyanna. We may never know for sure, and that in itself is a stressor.

Today marks the first day in weeks that my brain is working well. I had no idea how far down the slope I had gone. That’s the hallmark of Lyme brain (such a warm, fuzzy little description for losing your mind). It’s so subtle. I hope I can learn to recognize relapse symptoms more quickly. I don’t like the sensation of somnambulating through life. I may appear and act normal (well, as normal as normal is for me), but if you ask me to remember too much, or do something mentally challenging, like math, you’ll see the gaping holes in my speech, thought and memory.

I am ambivalent about this latest flare-up (relapse, setback, shitshow, whatever you want to call it). Overall, my symptoms are sputtering and losing steam. Either that or I am learning to live with my new normal. Is that acceptance, or is it defeat? I must confess I am satisfied with my current situation—lifeguarding, Airbnb, writing, exercising, and keeping the house together. I can control this amount of stress and chaos. I can adjust the intensity and frequency of all these activities when I need to, and I can push it, or I can take naps and rest. Of course this isn’t what I want. Like Veruca Salt I want it all and I want it now! I hate having limitations. Waaah! I know, cry me a river.

I guess acceptance means being content with the parameters of my illness. When I first typed this, I said “the illness”. I can scarcely admit even now, that it is MY illness, an illness that will be mine and belong to me until I die. This is just for now. I don’t want to be in this particular phase (which is basically the lifestyle of a five-year-old) forever. However, it is not merely existing anymore. It is a life, and not a bad one, either.

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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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