Tag: healing

baby steps

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In the past 7 years I have made many attempts to get “back to life.” “Life” was defined as a regular job, keeping up the house, paying the bills, an active social life, and a return to health. Each effort lasted until a flare-up, and then I couldn’t juggle all of those things. After most attempts I felt worse than if I had never tried. This past year it was clear there would be no “back to life” as I knew it.

I decided to redefine what “life” meant to me. I had to look deep and let go of things that took too much of my energy and time, rather than exhaust myself keeping the thought of that other life alive. I’m sure that some friends looked on in concern as I sold my house, my car, and many of my things, bought a townhome to share with my daughter (I made the down payment, she carries the mortgage and we are both on the deed), and came down to Tucson to stay with my dad. “Crazy,” they probably thought, ” I could never do that.”  And maybe they couldn’t, or wouldn’t.

I’m going to do something I rarely do: give myself credit for knowing, deep in my bones, that this was precisely the right series of decisions for me. Like a snake molting its’ skin, or for me, more like a hermit crab scuttling from one snug home to another, I did all those things listed above . I made my  life move, whether I’m truly ready or not. Somehow, I knew what I needed was more space where I had time to think, and to do nothing but concentrate on my health and my self. It sounds like a huge gamble, but in reality it wasn’t. Once you’ve accepted the way things are going to be and what you can change the options are easy.

You’d be surprised how little possessions matter when the tradeoff is the freedom to grow. In fact, I feel lighter, less held down by a place or the responsibilities of caring for all that stuff. Do I miss some of those things? Of course I do, sometimes, but for the most part I don’t think of them at all.

So far, the results have paid off. I feel better than I have in over seven years. There were a few hiccups (the COVID vaccination and boosters sent my immune system into overdrive for weeks afterwards), and a few times when it seemed like nothing was going to change. Then one day I woke up and realized I hadn’t taken any medications, herbs, or sleep aids for Lyme in a week. Another day I had the energy to lift weights or swim 2000 yards. I was writing with a clarity I hadn’t had in so long I feared it was gone forever.

This is good news, right? Surprisingly, returning to health has required a great deal of work and energy.  A subject we don’t talk about much is the emotional burden of having a chronic disease. Lyme, in particular, is linked to  higher rates of depression and suicide, and lower quality of life., and PTSD  PTSD? I didn’t see that one coming,  but because I never know when or why I experience a flare-up, nor do I know how bad or how long a relapse will last, my body and mind stay on hyper-alert, always ready to fight. As you can imagine, this is an exhausting vigil.

I believe I had forgotten how to be healthy, how to have hopes and aspirations, and how to have a regular, steady rhythm to life.  I discovered that I had been protecting myself from the inevitable relapse, even in areas of my life like books, movies, and television, never watching anything too emotionally challenging unless I was “up for it.” Shedding all of the parts of my life that took up time and energy gave me room to just…be.

Living in a retirement community in Tucson with Dad is about as low-key as you can get. My dad’s house is a short walk from the pool and weight room. I walk Rocky around the neighborhood every morning, saying hello to the other walkers. I help Dad with whatever he needs, which isn’t much (usually a tech problem or something he doesn’t want to take care of), and the rest of my time is my own. Well, mostly my own. One of the secrets I’ve learned during my journey, is that I need to keep plugging away at writing and learning when I can, even if I forget it later or what I wrote was crap, because sooner or later, the writing becomes good and the information sticks.

I never stopped taking twice-weekly Spanish classes and kept on writing. I continue to make long-term plans for moving to another country, even when it seemed hopeless. This has been absolutely necessary to healing, because having the hope of a different fulfilling life (even if it might never actually happen) makes my life worthwhile. And so I make these baby steps forward as my mind and body come to terms with what I can’t change and what I can change.  I am slowly reclaiming my life, wresting what I can away from Lyme while still recognizing it will always be with me.

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solitude

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My social life has changed radically in the past seven years, and it’s hard to distinguish how much is due to Lyme, and how much is due to COVID. Now I’m trying to figure out why I like the quieter life so damn much.

“There is a difference between solitude and loneliness.”
― Maggie Smith

This is profoundly important to recognize. I am not lonely, nor am I pining away for FOMO (for those of you who’ve lived under a rock for too long, FOMO is “fear of missing out,” something most of outgrow sometime between middle school and the twenties). If I wanted to see people and be more social, I would.  But (she says in her best pouty voice) I don’t wanna.

Therefore, I’ve been giving a lot of thought to what this means to me. I was stumped. I am not someone who shies away from people. Some might call me an extrovert, but I’m an extroverted introvert, i.e., someone who can be outgoing and enjoy chit-chat, but absolutely need to be alone to recharge. It’s quite a fascinating subject to read about, and there are some fine books written on introversion. Which brings me to the obstacle I kept coming back to:

“Solitude is fine but you need someone to tell that solitude is fine.”
― Honoré de Balzac

Our society is adamantly focused on extroversion. Whether it’s a commercial showing shiny happy people getting together or a Hallmark movie highlighting the exhausting search for family and love, we are rarely shown people who are alone and content. This was getting under my skin and causing me to judge myself; to deem my desire to be alone as a negative, rather than a positive.

So of course I asked my therapist about this conundrum. He asked me how I felt when I was alone. It brings me back to the comfort and safety of childhood, those nights when I curled up wherever there was privacy in our home and read. I remember staying up late in our study, watching the little tv dad had in there for watching golf and tennis, and discovering the joy of watching a good movie (I vividly recall in particular Oklahoma and On the Town.)

I answered my own question and there was my “permission.” If solitude was what I wanted, then I should have it.

“If you’re lonely when you’re alone, you’re in bad company.”
― Jean-Paul Sartre

I have never loved my own company more than now. It’s a preference to be alone at this time. My craving solitude is more than a reallocation of my energy (still a necessary component of having Lyme).  It’s more than a safety precaution in COVID times. I’ve always been this way.

“The greatest thing in the world is to know how to belong to oneself.”
― Michel de Montaigne

Note that I say “at this time.” I don’t know if I’ll always prefer the level of solitude I have now.  But for the present, I not only prefer it, I demand it. I’m certain this all has to do with healing from the past decade.

A lot has happened between 2010 and now. Mom died. My marriage went downhill. My ex took a buyout and left his job. Katie came back home (that was a good thing, but still stressful). We decided to divorce. That’s when life went into overdrive.

Between December 10, the day we decided to divorce, and January 17, the day I went to Bennington, I packed the house and got it ready to sell, and found another house. I was still negotiating the contract on the bus from the Albany airport and Bennington. I moved four weeks after starting grad school. There was much solitude during those two years, but not the kind that recharges, as anyone who has gone to grad school can attest.

And then came the Lyme years, where solitude was a given, not a choice. Being sick is a special kind of solitude, and it required all of my energy.

“I enjoy convalescence. It is the part that makes the illness worth while.”
― George Bernard Shaw

Now that I am in remission for long stretches I have time to process this long stretch of change and begin to heal. Healing is a very subjunctive thing, much like grief, pain, sickness, and love. My process for healing is to immerse myself into things I want to do, including napping, walking, reading, cooking, swimming, cleaning, writing, studying, and yes, solitude.

There’s nothing inherently wrong with this, but I’ve grown positively crotchety about guarding my time zealously. I am enjoying the peaceful feeling of the freedom to do what nourishes you after a long illness.

“Loneliness is the poverty of self; solitude is richness of self.”
― May Sarton

This is the truth. I can’t be the only person I know who prefers solitude. I find my newfound solitude to be the the rewards of major lifestyle changes. I wanted this. I downsized my world to get this time, so my job is to honor what I have created.

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Herbs

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People are often amazed by how many herbs I use for Lyme treatment. Our medical community has done a fine job of discrediting the use of herbs to treat many illnesses effectively. I think people imagine me wandering down the aisles of Whole Foods or Natural Grocers, picking up things that will help me with little clue other than ‘I heard it might help’. I do buy herbs or supplements like this, especially for sleep, but not for Lyme. The fact is, any LLMD worth their salt will attack Lyme using many different methods, including herbs. Some herbs are better for one thing, and others are better for another. I buy the herbs I need through my LLMD. Usually, they are proven protocols cited by leading authorities in the field of Lyme, like Dr. Richard Horowitz, or Steven Buhner.

So when something flares up, we (this is not the royal we, Lyme patients have to be adept at describing what is happening) have to evaluate what strategy to use and why. It might be bartonella, or an opportunistic secondary infection, or a return of babesia. There are several possibilities and one medicine does not fit all.

Anyone who thinks herbs aren’t ‘real medicines’ needs to wake up. Aspirin, digoxin, quinine, and morphine are just a few drugs derived from herbs. It’s no wonder drug companies have an active interest in suppressing herbal medicine. I can see some people rolling their eyes, envisioning the very thought that herbs or supplements have any place in medical care. Fine. I don’t care. Trying to convince someone that this is not true is useless, as is trying to convince people who think all pharmaceuticals are bad, or ‘not natural’. To me, both positions show a profound unwillingness to place results over beliefs.

This is not new. It’s as old as the art of healing. With a complex disease like Lyme, the push and pull between science, traditional healing, and other factors like diet, exercise, and religion, leaves most Lyme sufferers with far too many options. The cost of treating Lyme means many patients don’t get proper treatment. Insurance usually doesn’t cover much more than 30-60 days of doxycycline.

This is compounded by the belief that illness and/or ill health is an option, that your lifestyle or lack of discipline is to blame for your illness. Not everyone believes this, but in wealthy countries like America, there are groups who frame illness and ill health as a failure to a) pray enough, or b) not exercise enough, or c) not take enough supplements, or d) not  have the right healthcare and/or not visit the doctor/get tested. There are probably a lot more subsets, but it is a strong system of ‘blaming the ill’.

But I digress. I am at a stage where I rely mostly on herbs. If I have a severe relapse, I’ll take whatever is recommended to get back to health. I’m not a snob. Nor am I a fool. Lyme support groups online are filled with ‘miracle cures’ and also with long, long sagas of literally dozens of tests, doctors, and medical treatments. I don’t have to go to the doctor every time I feel out of sorts, or have a new symptom. I won’t jump on the Rife machine bandwagon, or coffee enemas, or whatever someone has said worked for them. However, when dozens of other Lyme sufferers say there is something new that might work, I’ll ask my LLMD when I have an appointment. Dapsone is one such pharmaceutical that has made a huge different to some patients. Stevia is another one when it was found to be a biofilm buster.

It really is a lot of work staying current with treatments and protocols. I have biases. Maybe coffee enemas have helped some people. I’m just not a fan of any enemas, so I’m not going to try that one. You won’t ever find me praying to get better, but I don’t mind if people say they are praying for me. I actively avoid going to the doctor for the little things, and that a might come back and bite me in the butt someday. I’m willing to take some risks as a tradeoff, as are almost all ill people, because a life spent striving for perfect health might not be living at all.

It could be said I take a relaxed approach to my illness, if that makes sense. Obviously this isn’t always possible. One of the luxuries of Lyme (Haha, like there really are any) is that when it is controlled, it’s not likely to kill you, at least not for a long, long time. So I take my herbs, as I did this past week, when I had a flare up. The herbs caused a herx (Jarisch-Herxmeimer reaction, or ‘when the cure makes you feel like shit’) as I knew they would. They also made me feel better, as I hoped they would. When that happens, I wake up feeling better. The clouds part and the sun shines and all is right with the world once again.

I haven’t been hospitalized, nor have I used IV antibiotics. I feel well a good deal of the time. I have accepted that perhaps Lyme will be with me always. I use herbs and pharmaceuticals. Perhaps one day Western medicine will become more flexible about how to heal their patients. Until then, I’d say my choices have been right for me and I stand by them.

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comfort

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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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rebellion

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Getting completely well is harder than I thought. I am so close to the end yet farther away than ever. This is where I should get some kind of power surge, both mental and physical. I am sputtering. No surges here. Instead, my head and body seem united in a small rebellion. Anyone who knows me well has seen how hard I work at getting better. Clean eating (and by clean, I mean no gluten, dairy, sugar, processed food or caffeine. Go on, try it. I dare you), early bedtimes, naps, gentle exercise, mindfulness, and strict adherence to taking my medications. I’d give myself an A+ in this, until now. Now I find myself skipping my medications. I ate dairy the other day. It did not go well. I had half a drink on a date, and it was delicious (it was also a great date. I want to see him again, see if the chemistry holds, but Trump fucked that all up). The alcohol didn’t affect me as much as I thought it would, but I had maybe half a shot of a Rusty Nail. God, I love a good Rusty Nail on a cold winter’s night. I eat too much or too little. I eat chips for lunch sometimes.

Maybe this is to be expected, a more realistic path than the monastic life I have led for the past two years. Maybe I am frustrated, and tell myself “what the fuck, it doesn’t matter. After all I’ve done, I’m still sick.” This is a dangerous time for me. I have to be able to see the light at the end, and it’s not there. Why is healing so hard? Why does Lyme have to be so goddamned hard? 90% is no better than 50% for living a life. In some ways it’s worse, because you get a glimpse of a normal life again, but can’t quite do it. In a sick way (sorry, bad pun alert!), nodding off on the sofa was preferable, because I had no choice in the matter.

How did I handle this in the past? If I look back, I always hit this stage at some point post-surgery. After my ACL replacement, I hit rock bottom around three weeks after. My ex, an old hand at taking care of me after surgery, knew my pattern well. He brought me a dozen oysters and a bottle of Pouilly Fuisse (or fussy pussy, as it was known in our house). It helped tremendously. Lyme is different. I get a string of days where I think this is really it, this is the end. I’m going to feel great. Then I don’t, and I don’t know why. This turned into a bit of a whiny rant, hasn’t it? I don’t care. And that is at the heart of my rebellion. I think I am mentally tired of being positive. I also think the political turmoil that is Trump has been soul-sucking and spiritually exhausting. I’m going to have to find a way to tap into some good juju.

Update: I had an acupuncture treatment this morning. There are reasons I don’t feel well, and they are spelled h-o-r-m-o-n-e-s. Ha! Held hostage by my body once again. By the way, acupuncture rocks. It’s hard to find the words to describe the way it feels. For me, after the initial shock of some of the needles, (if your liver is flaring up, the needle zings as it goes in, and not in a nice way) it’s like a warm electric current flowing through my body. She cradles my head and does acupressure up and down my spine, neck and hips. It is heaven. Oh yeah, she said relax, give yourself a break, you’re only human. I think I’m gonna be alright.

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