PTSD, Caretaking and Acceptance

In 1978, I took care of my mother when she had cancer. I was twenty-two. I didn’t know I had PTSD back then. They actually hadn’t come up with the term yet.

My feelings were buried in those days and that was normal for me. So were being hyper-vigilant and suffering from insomnia.

I do remember being puzzled one night in 1979, when I realized I’d lost any sense of a future. It was a bizarre visceral sense, as if a huge, thick, immovable wall had somehow come up inches from my face where before my future lay open. This, I’ve come to know, is what they call “a sense of a foreshortened future”.

I also had an exaggerated startle response, which embarrassed me, and woke every night at two in the morning unable to breathe. I thought it had something to do with smoking. I didn’t know you could have panic attacks in your sleep.

During the day, I was the personification of “normal”. I was cheerful and energetic and ever-helpful, until I burned out and became sick right before my mom died.

It took about six months after she died before I regained any wellbeing. The hardest part was feeling guilty for burning-out. I didn’t know then I could’ve asked for help. I didn’t know I could’ve said “I’m so tired, I need someone to help me here” or “I need a time-out, some kind of break, to rejuvenate.”

I just kept going like a machine until I wore out.

So here I am, almost forty years later, taking care of my dear husband, Jack, who has Congestive Heart Failure and Kidney Disease. Since we moved to Arizona in August, he’s been hospitalized six times.

The experience of caretaking is different now compared to when I was twenty-two and frozen inside. One big difference is I feel my feelings now since going off the PTSD meds a few years ago (see my book: PTSD: Frozen in Time).

Sometimes the feelings are overwhelming.

And when I say overwhelming, I mean terrifying.

I am afraid of Jack suffering, of his being unable to breathe and going back to the hospital, of his kidneys giving out from the diuretics, of the possibility he’ll get a stroke, of my burning-out and getting sick and depressed.

Sometimes, I just feel scared. I wake up in the night able to breathe just fine, thank God, but I’m scared and can’t figure out specifically why. I calm down and the fear goes away when I say the following quote to myself. (It’s from the book Alcoholics Anonymous.)

“And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing, or situation—some fact of my life —unacceptable to me, and I can find no serenity until I accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing, happens in God’s world by mistake. Until I could accept my alcoholism, I could not stay sober; unless I accept life completely on life’s terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and in my attitudes.”

When I was little, everyone in my family denied reality and I did, too, both involuntarily from the “freeze” of fight/flight/freeze/collapse and consciously, when overwhelming feelings came up in response to the insane behavior of those I lived with. My feelings were buried and I couldn’t release the trauma energy, which determined the quality of my life for decades to come (numbness, despair and occasional rage).

When I unconsciously fall back into burying feelings, which is essentially denying reality, fear blooms in my stomach like a sickness. But if I take a few minutes and detail the reality of what’s going on in the moment, and cry it out and/or talk it out and/or run it out—then I feel better, more grounded. I get my perspective back and I don’t feel scared anymore. I might feel concerned, but not scared like a powerless kid. I can come up with solutions.

Some people think acceptance is resignation. For me, it’s the first step to taking action.

So here I am, not clinically burned-out, but on the way there if I don’t take steps to prevent it. My biggest issues are hyperarousal, hyper-vigilance, hyper-focus on Jack 24/7 and feelings of isolation. I must get out of the house and out of my head several times a week to feel balanced. Thank goodness, I can go to support meetings and be reminded to accept the things I cannot change and change the things I can.

I need to come up with more ideas, though, because this is how I feel today: I’m so tired, I need someone to help me here and I need more time-out, some kind of break, to rejuvenate.

I’m not a machine anymore. I may have been treated like one once upon a time, but I never was.

Be Like the Hummingbird

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Be Like the Hummingbird. Find a source of nectar and places to rest.

Meet one of the two hummingbirds who come throughout the day to feed in our little patio.

There’s a male and a female. After they drink their nectar, they have such royal posture as they sit on the Bird of Paradise outside our patio wall—as if surveying their kingdom–that I think of them as a prince and princess.

I read somewhere that because of their incredible metabolism, they have to rest 85% of the time.

I can identify, especially lately. Jack is hospitalized now for the fourth time—after getting a blood clot removed from his leg. He’s in rehab at the moment.

I am EXHAUSTED.

But—for the first time in my life—I have been asking for help. His daughter has been out to AZ twice, my sister-in-law came last week, my brother is coming next week, my cousins the week after. I put a request on our apartment complex site for a cleaning lady and people who would hang out in our den for a couple hours while I go for a run or to the store (paid sitting) when Jack is back and got a lot of responses.

I am trying to conserve energy. It’s so easy for people with PTSD to burn out. I’ve burned out twice in my life—at 22 after taking care of my mom before she died of cancer and at 49 due to years of workaholism. I bounced back pretty quickly at 22. Not so much at 49. Now I’m 60.

I do not want to risk it again.

I will conserve energy as much as I can like the hummingbird.

What is my nectar?

Driving to and from the hospital, I blast tunes—everything from Louis Armstrong to Santana to Tony Bennett to The Doors.

I’ve been eating pretty good. I drink my anti-inflammatory drink every day.

The last few days, I’ve been able to take a run by the mountains. Today an eagle soared above me and a hawk landed close by underneath a tree. Butterflies everywhere.

I’ve been reading some great books. (Just finished the fantastic Trials of this Earth by Mary Hamilton. Memoir: Part Dickens, Part Laura Ingalls Wilder, Part Mark Twain and all true.)

I cry whenever I can. That’s huge for me.

I do Trauma Release Exercises most every day.

But I am beat.

Interestingly, before all this happened, Jack had a dream. He saw himself changing vehicles while they were both moving. He said it was an awful dream–terrifying and painful. And sure enough, his body has changed and it’s been scary and painful.

What a mystery life is.

 

 

PTSD and Burnout, or What a Shiny Button Told Me

We were out here in AZ only a few weeks when I caught a bad cold. First in ten years. It wasn’t surprising though. I was exhausted after moving cross-country, buying a car, driving for the first time in thirty-five years, learning the roads of my new neighborhood, finding grocery stores, pharmacies, barbers, dry cleaners, doctors for Jack, etc.

Then our furniture arrived and all which that entailed: putting up forty pictures, stocking the fridge and cabinets, setting up the closets, etc.

I tend towards constant hypervigilance, but thanks to Trauma Release Exercises (TRE) and other PTSD energy release methods I wrote about in my book PTSD: Frozen in Time, I’ve been able to sleep pretty regularly—and that’s key for my mental health.

I always have one eye on Jack. He’s almost thirty years older than me and had aortic valve replacement surgery in December. He also has only half of one kidney working. So I’m always surreptitiously checking on his wellbeing, if not overtly.

In early October, he had uncharacteristic GI tract distress. A few nights later, he had trouble breathing. Since we’d just gone to the cardiologist and Jack had no symptoms at that time and his blood pressure was consistently normal (we check it daily), we had no reason to believe it was a cardiac issue.

Fast forward to today. Over the last three weeks, I’ve taken him to ER twice and called 911 once. He was hospitalized twice and finally diagnosed with Congestive Heart Failure and bronchitis. With meds and exercise, he has a fifty-fifty chance to turn this around. (They suspect a bacterial infection weakened his heart, lungs, etc.)

It’s just me here in AZ – no family, except a cousin and 99-year old uncle outside Phoenix – so it’s vital I don’t burn out.

I’ve made sure to do TRE nearly every day because it relaxes my core enough to cry. Crying doesn’t just cleanse my soul, it also releases the stress hormone cortisol. Afterwards, I feel lighter, feelings of overwhelm and fatigue dissipate, and my energy returns.

I’ve burned out twice before. The first time was when I was twenty-two and taking care of my mother who had cancer. Physically, I bounced back pretty fast after she passed away. I had youth and good health going for me.

I burned out again when I was forty-nine, [PTSD plus a workaholic lifestyle for decades and then no sleep for a year – hello hallucinations! — which I also detail in my book (it’s the chapter at the end called “Startle”.)] That took me years to recover from. (I’m sixty now.)

Funny thing—the irrational idea I unconsciously held that simply by having all this experience and knowledge, I can avoid burnout again. Ha!

A few days ago, Jack was home again and taking a nap. It was the late afternoon of a gorgeous, sunny Arizona day. The house was clean, the dishwasher humming, the washing machine on the dry cycle, the carpets vacuumed, the wood floors swept, the fridge packed with all sorts of good, healthy foods. The leaves of the trees outside my window danced along the walls.

I sat on my bed feeling pretty peaceful. I said a rosary as I looked out on the mountains. I turned my eyes away a moment, moved my hand, and jumped halfway off the bed. You’d think the Wicked Witch of the West just popped up from the floor when it was just the reflection of my moving hand caught by the shiny chrome button on the side of my white cargo pants.

My stomach caved. I hadn’t realized I was in such a state of fight or flight. For me, when I’m in that place of startle, I know I’m not doing that well.

So what am I going to do to keep myself as healthy as I can?

Based on my history, rest is essential. It’s broken up in the night right now because Jack has unpredictable trouble breathing and walking, so when he gets up (and he gets up a lot on a diuretic), I get up. All I can do is grab naps during the day when I can.

I’ll continue to do TRE and cry out the stress.

I’m tired, so I haven’t felt like exercising—but for me that’s vital, too. Not crazy two-hour workouts, but optimally half an hour a day or every other day.

I’ve gone back to listening to binaural beats. I learned about them a few years ago. It’s music with a beat built in that changes the pulse of your brain to a more relaxed state. Your brain irresistibly matches the beat. (I downloaded an album off ITunes literally called “Binaural Beats”.) That helps me calm down when I’m too wired to rest.

We’ve been watching favorite or classic movies that give us a happy feeling (endorphins!) like Casablanca, The African Queen, The Secret of Roan Inish and The Sound of Music or diverting action films like The Equalizer or the Bourne movies.

I make super healthy meals for us and an anti-inflammatory drink made up of the juice of one lemon, three tbs. apple cider vinegar and eight ounces of water sweetened with two tsp. of maple syrup. (The lemon and apple cider vinegar are acidic in the glass, but metabolized by the body as alkaline.) I can feel the difference in my energy when I drink that.

When I do errands, I put CD’s on the car stereo and blast the music. Eric Clapton, Santana, Aretha…. Man, does that give me a soul-saving charge.

I bought a hummingbird feeder today. We have a little patio that faces the mountains. At least once a day, a hummingbird darts in, looks around for food and finding none, darts back out again. I’d love for the hummingbirds to stay just a little while.

I want to do as much life affirming and enjoyable stuff as I can.

I also feel good when I take a moment before sleep and think about what I loved about the day.

Today I loved the beautiful mountains behind our place, the gorgeous blue sky and perfect weather, my morning Coke, finally returning to writing again while Jack took a nap, talking to the kind lady who works at Panera as I waited for the onion soup to-go (which Jack loves), blasting “Layla” on the way to the grocery store, meeting a friendly neighbor this evening who asked about Jack, and seeing Jack’s dear face every time I walked into the living room (that’s his base right now).

Life is such a challenge sometimes, but I think that’s the point. How can I evolve? How can I become a better person?

Moving to AZ, PTSD and a Can of Fanta Orange

As of Tuesday, we’ll have been in Arizona two months…and what a two months it’s been!

OMG!! We’re still so exhausted.

We arrived in Phoenix near midnight on August 11th. We’d hired a driver to pick us up at the airport and take us into the Tucson area. (Long story as to why we flew to Phoenix instead of Tucson.)

While Jack and the driver waited for our luggage, I stepped outside for a few minutes. I clutched a big white 3-hole binder notebook tightly to my chest. It held every single password to every single account we had: banks, charge cards, ATM’s, online sites. It also contained three years of taxes, birth certificates, our new lease, directions to our temporary house and so on. I remember sitting down a moment in the glorious Arizona night and taking a deep breath. We made it! We finally made it!

It was kind of warm so I put my purse and notebook down on the ground and took off my jacket. After a few minutes, I went back inside the terminal.

You know what’s coming, right?

As we approached Tucson an hour and a half later, I looked around the car and said to Jack, “Honey, did you see me put the white notebook in the trunk?”

AHHHHHHHHHH!!!!

Oh the sinking feeling in my stomach!

Need I say, I was up until dawn changing passwords.

The good news: the next day, some lovely honest soul handed the notebook into the Phoenix airport and they Fed Ex’d it to our new place. God bless you honest soul, wherever you are!!

For the next two weeks, while waiting for our furniture to arrive, we stayed in a gorgeous home in the mountains in Saddlebrooke. I saw four shooting stars the first night. It was very dark in the evening in that area so when I’d go outside to look at the sky, I’d see billions of stars. I’d been dreaming of that for months.

In the daytime, the mountains reminded me of The Sound of Music, one of my favorite movies, so you just know I was singing “The Lonely Goatherd”, “The Sound of Music”, and “Climb Every Mountain” all the time.

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I also met this cactus.

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Can you see his face? He didn’t have the happiest expression, but he felt so kind. I talked to him a lot.

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Sometimes I felt like I was in heaven.

Speaking of heaven, there was a soul nearby taking a break from there. He kept slamming the door of the second bedroom of our temporary house. As soon as we acknowledged him, he stopped doing it. He was actually quite debonair, smelling of a delicious after-shave. When I went into a deep meditative state, I could see he was tall, middle-aged, with dark hair and glasses. I didn’t get any telepathic message, but my impression was he was related to the owner and just checking us out. He left after the first few nights.

I have to tell you, this move was pretty stressful what with Jack being 88 and me having PTSD.

The altitude hit him hard and he felt dizzy for a couple weeks. He had and continues to have balance issues that understandably undermine his wellbeing. I had trouble breathing for a week, then got sick as a dog with a horrible cold.

With the exception of twice last September, I hadn’t driven in 35 years (Jack doesn’t drive anymore), so between trying to get my sea-legs again and not knowing where we were and our iPhone GPS voice sometimes working, sometimes not—finding our way around was extremely stressful.

I bought a car for the first time. That was an experience.

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I unpacked fifty boxes at our new place and hung about 40 paintings/pictures/posters.

I stocked our new kitchen.

AT&T didn’t work at all out here, so I had to switch to Verizon and buy new phones. (They didn’t do iPhone 5s.)

I had to find all new doctors for Jack. And a barber. Why do they all want to give him a buzz cut? For years now, I keep asking for the Cary Grant look, circa 1966, and they nod their heads and then make him look like he’s in boot camp.

Someone left the patio door in our new apartment open before we moved in, so we had lots of leaping, many-legged bugs as well as moths to clear out in the weeks that followed. Quite gross.

Jack’s computer died so that was a bummer. I finally reset it to factory settings, but still can’t figure out how to enable his video mode so he can do his flight simulator. One thing at a time, though, right?

None of this would have been such a big deal if it weren’t for that fact that I was EXHAUSTED and Jack was dizzy and/or lightheaded and/or off-balance most of the time and I surreptitiously watched him like a hawk practically every minute of the day, unless he was sleeping.

Need I say, I was in a near-constant state of hypervigilance. Startle effect returned. My tummy began to twist and shout. My eye began twitching. And then I started waking up with a disconcerting physical symptom of stress I thought I’d left behind two years ago. Portions of my arms buzzed with energy as if a zillion, trillion, kazillion cells had condensed in small areas and begun expanding and contracting at top speed.

I don’t like waking up with those buzzing arms, but I’m grateful my body gives me messages. This particular message means: BURN OUT APPROACHING!! Slow down, rest, do Trauma Release Exercises (TRE).

Thank God for TRE. It’s still my number one go-to when I find myself in a state of overwhelm. As I wrote in my book, PTSD: Frozen in Time, Trauma Release Exercises relax the psoas muscle—the first muscle activated when fight or flight hits. When I relax the psoas, I’m able to cry and release the cortisol build-up (stress chemicals). Then my fatigue lifts, my stress symptoms abate, I get perspective back and I feel pretty good again.

***

Mid-September, we visited my 99-year-old uncle Roy outside Phoenix. He used to live in his dream home on a golf course until last winter when his physical needs required 24/7 medical care. Even though his facility is very nice, it was still tough to see him there and I know it’s very tough for him to be there.

Driving home, I felt very sad. After an hour and a half on the highway, I pulled over to a rest stop. It was clean, quiet and empty. Just restrooms and vending machines. We decided to get something to drink and sit a few minutes before getting back on the road.

Although I’ve been drinking Coca Cola since high school, for some reason, I decided to get a Fanta Orange. I hadn’t had one of them since I was nine.

The sun was shining and it was hot, but we were comfortable sitting at a table in the shade.

Everything was strangely still and quiet. Wonderfully still and quiet.

I took a swig of the Fanta.

It was ice-cold and delicious.

I took another drink.

And then, out of nowhere, I felt joy.

 

 

Among My Souvenirs: Drugs, Nervous Breakdowns and Miss Bunny

I’ve been going through closets and boxes and throwing out stuff in anticipation of our move out west.

I am so excited!! Mountains!! Wide open spaces!! Billions of stars visible at night!! (I can only see one from our downtown Chicago high-rise.) Peace and quiet!! Sunny over 300 days a year!!! No more snow!! Close to Sedona and other areas loaded with positive energy and healers galore!!! No more sirens night and day (we’re one block from a big hospital). No more construction noise. (They built five high-rise buildings around ours in the last six years.) No more crazy traffic!! And all this at half the rent we’re paying now!!

I read a decluttering article where the author said, “If you aren’t sure you want to keep something, bring it up to your heart and ask, ‘Does this bring me joy? If not, toss.’”

I think that’s a good rule of thumb, but I am keeping some things that don’t necessarily bring me joy, but are important or dear to me for other reasons.

For example, I found some cartoons I drew in the 90’s and I love them because they remind me of how far I’ve come and that’s such a good feeling.

At that time, I was working sixty-hour weeks in a high-pressure, deadline-driven job. I’d look so forward to the weekends. I always had the feeling that if I could just get enough quality sleep and relaxation, I’d feel better again. But I never did. I usually felt either numb or in despair. It was an empty, sad, isolated life without meaningful relationships or any sense of wellbeing.

For a couple years, I did enjoy synthetic well-being with narcotics, but then my tolerance became too great and no amount of drugs made any difference. I just took them so I wouldn’t get sick.

Getting off them was the beginning of healing, but it sure wasn’t a smooth, easy road.

About four years into my sobriety, I had a nervous breakdown. I wrote about it in my short-read Startle: A True Story of PTSD and the Paranormal. One reason I fell apart was because my PTSD meds stopped working and I couldn’t sleep much anymore. I shudder to remember what I went through. But the good news is, not only did I get through it, but that’s when Jack came into my life. Hooray!!

When I got off the PTSD meds three and a half years ago, all the physical pain I knew in my twenties came back.

But now, thank God, all that’s gone, too.

When I look at this picture below, I think, Poor Miss Bunny. She had such a sad life and didn’t know why or have a clue as to how to fix it. So much more pain was on the way. If I could go back through time, I’d give her a big hug and tell her someday, she’ll understand exactly what happened to her when she was little and why she became the bunny she did.

And then I’d tell her if she only holds on, one day, when she least expects it, she’ll find love and eventually move far, far away to a beautiful land with mountains and horses and billions of stars in the sky each night.

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