Using Gratitude to Adapt to a Newly Diagnosed Condition: Dysautonomia

We Made it Through Another Year

Well, we did it! We made it through another year! 365 days. 8,760 hours. 525,600 minutes. 315,360,000 seconds. Quite an accomplishment, in my opinion, especially when a good many of us could only get through some of those seconds and minutes with clenched fists and clenched teeth. But we did it!

I hesitate to wish my survivor friends a happy new year because I know 2023 is going to be difficult, even if there are happy times. And it could be a terrible year, worse than 2022. So I compromise and say, “I wish you a safe, healthy(er), happy(er) new year.”

That wish is now going out to all of you reading this!

So Cute

https://www.theguardian.com/artanddesign/gallery/2023/jan/07/balloon-animals-beyond-the-poodle-in-pictures

Spencer is Fine 

For those of you who have just started reading my blog, I adopted the beautiful cat you see lounging in the header. We have been together now for three months. He is still very timid and spends a lot of time hiding. Once, I couldn’t find him for four whole days. He still spends so much time out of sight that his nickname is “Invisible Cat.”

Slowly, he’s getting used to being here. Baby step by baby step, he is getting to know his way around the apartment. He is also becoming more social. If he wants to be petted, he’ll let me know by putting his front paws on my knee as I sit at the computer. One day, he even jumped onto my lap – and then instantly exited on the other side. Oh well, maybe he will try again in a couple of weeks.

And I Am Fine – Even Grateful

Well, sort of. I’m old and creaky to start with, and I keep collecting diseases the way some old ladies collect cats.

I recently acquired a new diagnosis: dysautonomia, or autonomic nervous system failure. It’s unpredictable; it comes and goes, gets progressively worse, or mysteriously goes into remission after years. All the things that the body does without conscious thought can be affected. And it can’t be fixed, at least by Western medicine, and at least not quite yet.

These are the symptoms that most affect my quality of life:
     wide blood pressure variations
     inability to adapt to temperature changes
     loss of ability to smell and taste things
     poor balance

So far, I don’t feel rotten. I have to spend more time taking care of myself, which is a drag. But I am happy to say that I have discovered CBD. (I am not an early adopter.) So I bitch about having another disease, another specialist, and new symptoms to adapt to. I also sing with happiness because CBD works on all the different kinds of pain I have. And it is natural, herbal, vegan, and gluten-free. Many brands are non-GMO and organic, too. It has no side effects, as far as I can tell. My doctors all say, “Go for it.”

I imagine that it’s going to be challenging to adapt to this condition. The symptoms can change from day to day, and just as soon as I accept one configuration of symptoms, more will surely pop up.

I don’t know anybody with dysautonomia and therefore have nobody to turn to for information, advice, and comfort. I do know one person who had it, but her experience was very different from mine. She was stung by thousands of tiny jellyfish while swimming in Indonesian waters. The damaged nerves slowly repaired themselves, and, after 5-10 years, she was able to return to work. She even got pregnant and had a healthy baby! That is not going to be my story.

I did find two online support groups, but the members were a lot sicker than I am. I decided I needed a beginners’ group because reading the entries on these groups filled me with anxiety and dread. If I get that sick on down the road, I know those groups are available to me. But for now, there is no point in looking ahead – I need to concentrate on getting used to the present.

I have read that saying positive affirmations can ease the process of adapting to a new disease. It makes sense. The affirmations don’t erase the critical ways of thinking about oneself, but they do create a new set of neural pathways. I could then choose between old cult messages and the newly created ones, which hopefully will be more accurate and helpful. 

I can’t just start telling myself I am fantastic. I have to do it in a way that doesn’t enrage my Inner Cynic, who would argue long and loud and reinforce the old tapes.

Most affirmations, however, feel like bald-faced lies to me. Lying makes me very uncomfortable because, as a child, I had to lie about so many things.  I’m all for laying down new neural pathways, but I have to do it without lying.

I figured out how to contort myself in order to recast affirmations into a form I can tolerate, even if I cannot wholeheartedly embrace them. “Some other people think I am the greatest person in the world.” “I wish that I could honestly say that I am filled with love for my beautiful body.” 

I think I have found a way to solve the problem. I don’t have to choose – I can see different facets of a situation. Negative aspects and positive aspects can exist side-by-side. All I am trying to do is strengthen one set of neural pathways while leaving the other alone.

I can have mixed feelings about things – hate part of them, but also love part of them. Love the rose, hate the thorns.

Look at this:

Situation: I experience wide blood pressure variations.
I am so grateful that they have finally found a diagnosis.
(That’s completely true,  even though it is a sucky diagnosis.)

Situation: inability to adapt to temperature changes.
I have wonderfully warm tee shirts, sweaters, and hoodies.
(Even though it’s annoying to wear layers in the house.)

Situation: loss of much of my ability to smell and taste things.
I am grateful I can easily feel textures and taste salty, sweet, and acid foods.
It is nice not to have to smell the kitty litter box.
(At the same time, I want to smell the roses! and the sweetpeas, basil, tarragon, hand soap, laundry detergent, and my clean hair.)

Situation: poor balance .
I am grateful for physical therapy.
(It had better work. PT is time-consuming, and the exercises are boring.)

I was surprised at how easy it is to find true, nice, kind things to say to myself. There are no long discussions with the Inner Cynic, no worrying about whether I am being dishonest or not, and no getting sick and tired of the whole damn thing. I wish I had discovered how to do this in high school.

I think it’s time to learn more about the process of forming a new neural pathway. Should I say the positive statement out loud? Do I have to use the same words each time? How often should it be said? At what intervals? How can you tell when the brain has made a new pathway? 

Is there a way to train the brain to go directly to positive thoughts, bypassing the negative ones? Is there an instruction manual available? A workbook?

I’m so glad I thought of using affirmations and gratitude statements, made especially for me, to learn to live with dysautonomia symptoms. And symptoms of everything else in life, too. If it works, why not?

A Hard Christmas Season for RA/MC Survivors

 

I have heard from way more than one RA/MC survivor that the 2022 Solstice/Yule/Christmas/New Year’s season has been harder than usual.

It was for me. I have been spoiled by the last two years. To my amazement, I sailed through all the holidays just as if I were not an RA survivor. I still was aware of memories and feelings about my family of origin – dislike of holiday feasts and other forms of jollity and deep disappointment in presents. Of course, all my childhood memories of holidays were tainted by cult experiences. Many gifts were triggers (like taxidermy baby chicks at Easter) or chosen to make me feel fat, stupid, unacceptable, unheard, misunderstood, and unloved.

This year, I was caught unawares around the middle of December. Suddenly, my senses were dulled and it was extremely difficult to enjoy anything whatsoever. Not my friends, not the cat, not even coffee or chocolate. I felt unconnected to others and to everything inside and outside myself. 

For about two weeks, I felt like a half-ghost, floating through the days, not thinking about what was coming. Not connected to much of anything, certainly not to my fear. I was in flashback, a feelings-flashback, a flashback to childhood dissociation.

I told myself I would get my energy back after the first of the year, but I woke up on the 28th feeling “normal.” I have more energy and I once more care about my friends and my projects. I have no idea why there was a two-week flashback this year and not last year or the year before. I have no idea if I will greet all the holidays in 2023 with flashbacks or whether I will once again shrug them off.

But I do know that whatever happens, I will cope. 

On Comparing Myself to Others

I subscribe to Anu Garg’s “A.Word.A.Day,” along with almost 4,000,000 other people. You can subscribe here: http://wordsmith.org/.  Archives are here https://wordsmith.org/words/today.html. It’s free.

Today’s email starts with these words:

“I’m such an underachiever.

“I don’t have a single world record to my name. Not only that, I have not even attempted one.

“Make it, underachiever and unambitious.

“I was reminded of this when I read about a man named Ashrita Furman. (https://www.ashrita.com/) He has made more than 700 world records. Imagine when the number of records you have made needs to be rounded. To the nearest hundreds!

“Furman has another record I had not even thought about: Having made the largest number of world records.

“That makes me: underachiever, unambitious, and unimaginative.

“…. well, I sit here in my corner of the world, playing with words.

“This week we introduce you to five words that make a record of sorts, let’s call them word records.”

I love this guy, who gives me a word every morning for six days and on the seventh gives me readers’ comments, limericks, and puns on the week’s words. 

Today’s word is eunoia, the shortest word in English with all five vowels. (A word record!) It means “a feeling of goodwill” and has inspired a really odd book. https://www.amazon.com/dp/1552452255/ws00-20. Peek inside: you will be amazed.

At the moment, I am not ashamed to say I am an underachiever, unambitious, and unimaginative. Everybody I know is. I may have met a few people in Ashrita Furman’s league, but I can’t recall who or when. And yet I keep scolding myself for not being perfect…yet.

One of my core beliefs is that I am incompetent, not good enough. No matter how hard I try, I will never be good enough. Unless I am the best in the world, I am second-rate. 

With standards that high, it is a self-fulfilling prophecy. How would I even know I was the best in the world at something? If somebody told me I was, I would assume it was a trick and they were lying so they could laugh at me when I believed them. And even if it were true, and I knew for sure it was true, I would also know that somebody better than me would come along, and I would once again be second-rate. One little moment of success, snatched away almost immediately.

Looking at this situation with a jaundiced eye, I conclude that it is ridiculous to compare myself to others. It’s a no-win situation, a waste of time and energy, and a drain on my life force. I’ll never be the prettiest, the smartest, the best educated, the most accomplished, the most original thinker, the best dancer. If that is to be my life’s goal, I will fail dismally. It is better to be content with being mediocre.

It’s no secret how I came to believe I was doomed to fail over and over. In the cult, children were set up to fail and then blamed and shamed for not succeeding. We were placed in double binds, and whatever path we took, we were punished for taking the wrong one. Stripped of all self-confidence, our minds were ready to unquestionably obey any order given. We were trained to obey without thought or resistance.

At home, the methods were different, but the message was the same. My mother had a beautiful, accomplished older sister, and, on a good day, she felt second-best. I was supposed to have the life she should have had – or rather, her sister’s life. Unfortunately, it doesn’t work that way. My genetic makeup was different and I was not born in 1895.

There was less pressure at school – until I got to college. I had chosen an Ivy League co-ed school with a ratio of ten boys to every girl. Standards were high, and competition was fierce. Girls didn’t shine in that atmosphere.

Over the years, I learned to let go of perfectionism. If a job was worth doing, it was still worthwhile, even if it had errors. A typo was not the end of the world. It was good enough, and good enough was good enough for me.

Now that I have lowered my standards, I find I am far less anxious. Instead of being mortified by everything I do, I can take pleasure in it. I enjoy the process and care much less about the finished product. And the finished product seems better to me because it is created in a calm atmosphere, not an anxious, chaotic rush.

And guess what? Now that I don’t compete with others, I enjoy them a lot more. I appreciate who they are and am happy for their success. I like myself more, and I like other people more, too.

Spencer’s News

In the olden days, I would blame myself for neglecting my cat. If I only paid enough attention to him, he wouldn’t be invisible most of the time. Now I enjoy discovering his personality in the few moments he makes a guest appearance. 

He comes up to me while I am at the computer, stands up on his hind legs, puts his front paws on my knees, and waits for me to scratch his chin. Today, for the first time, he jumped up on my lap. He stayed only long enough to jump down off the other side. I took that as a great compliment.

Some nights he comes and licks my neck for a moment. Now and then, he adds love bites. Last night, he crawled under the covers and settled next to me with one paw on my arm. He didn’t stay long, and he was completely invisible under the covers, but it made me happy.

My timid, invisible cat with soft shiny fur and pale yellow eyes is showing more and more affection. It’s slow-going, but that’s good enough. Actually, it’s great.

A Diagnosis at Last – Dysautonomia

INCHING TOWARD CHRISTMAS

I imagine a lot of you are feeling anxious about the approach of Christmas. Now is the time to start planning how you can minimize the amount of stress, both from the pressure of internal issues and from the craziness (or loneliness) created by the here-and-now world. It’s reassuring to have a plan going into a holiday and not have to scramble at the last minute to think of things to protect and calm yourself.

What has helped in the past? What has been useful in other situations, and could it be adapted to the days around Christmas? If you write down your plan, you will have a place to jot down things as they occur to you. You might be surprised at the number of things you have thought up and at how creative some of them are. 

Remember that the winter solstice is on Wednesday, December 21, and Christmas Eve/Christmas Day is on Saturday, December 24/Sunday, December 25. That doesn’t give you much time to catch your breath between the two major holidays.

 

SPENCER’S NEWS

This cat is a little odd, even for a cat. He knows how to simultaneously do and not do something. That’s called passive-aggressive in humans and weird in cats. 

Here’s what’s been going on lately.

I was hoping that by the end of the year he might reset his circadian rhythm and start hanging out with me in the office. To prepare for him, I bought a large, sumptuous, but inexpensive cat tree so he could watch me from up high, where he is safe from being stepped on. I moved furniture to accommodate the cat tree and started working on the boxes of stuff on the floor. 

Spencer beat the deadline by a month! For the last four days, he has spent the day in my office, only an arm’s length from me. How sweet! Except he remains invisible. Perhaps he has body dysmorphia and can’t bear people looking at him, except when he is totally immersed in inhaling catnip or eating.

You see, between my chair and the window is my former kitchen table. Underneath the table are boxes. Spencer lurks right behind the box that is nearest to me. Now and then he stirs in his sleep and the tiny sound alerts me to his whereabouts. I moved the box a little to give him more room and to allow me to peek and see if he was there.

See what I mean by passive-aggressive? “You want me by your side? Fine, but you won’t know I am there. I get the last word.” Actually, it seems more like social phobia, doesn’t it?

 

GRASSROOTS’ NEWS

There are new free Yoga and art workshops. We are finally starting to work on updating the resource section. (No promises that it will be done by the new year.)

If you want a copy of the latest Newsletter, or you want to subscribe, sign up in the comments section or use the GrassRoots “contact us” form at https://grassroots-ra-mc-collective.org/contact-us/

 

A DIAGNOSIS AT LAST – DYSAUTONOMIA

For those of you who are new to my blog, or have resumed reading after a hiatus, welcome! I’ll start by giving you a little background.

For about 30 years, I have had labile high blood pressure. In the last year, I have experienced sudden large drops in BP (between 50 and 60 points.) My current cardiologist was cautious about treating the high readings for fear of precipitating a low and risking me passing out and falling. He referred me to a hypertension clinic for a consult. Recently, I started having days when my blood pressure was normal +/- 15 points.

The hypertensive clinic ruled out lots of possible causes and then ran out of steam. I found one more possible cause of low readings by Googling and was able to document it. The breakthrough, however, was thanks to a survivor friend who suffers from polyvagal shutdown. She suggested I check it out, as one of the symptoms is a large drop in blood pressure. 

(An aside – RA survivors are treasure-troves of information, no thanks to their horrendous childhoods.  Many of us read voraciously in search of answers about our abuse and its effects, and many others have amassed a wealth of information about one of the many illnesses that are directly or indirectly caused by growing up with constant trauma.)

Polyvagal shutdown is a term for the trauma reaction of the autonomic nervous system. When fighting or fleeing isn’t possible, a person or animal goes into freeze mode. Think of a possum, tricking a predator into thinking it is dead and not as safe to eat or as tasty as living prey. I figure if it happens when no danger is present, it’s a kind of body memory, a flashback. I Googled it, found a self-screening test, and discovered that my symptoms matched….the controls. Rule that out.

But the possibility of some neurological issue causing the extreme lability made me ask for a neurology consult. The after-visit summary of my first visit gave me the idea I might have Parkinson’s Disease. I followed up on that and have been accepted as a patient in a neurological practice that focuses on Parkinson’s. They are in the process of ruling out other diseases, as Parkinson’s has no unique measurable quality that differentiates it from diseases with similar symptoms. They have also given me a physical therapy appointment to work on balance, as I trip over my own feet and fall a lot.

On Thursday, I had the second part of the evaluation to see whether the blood pressure issues were caused by a faulty autonomic nervous system. Well, golly gee, guess what? I flunked all four of the tests. That indicates that my brain is no longer able to communicate with my body to keep my blood pressure within a normal range. Finally, finally, we have the answer.

Preparing for the tests was very unpleasant. I had to stop using pain meds for three days before the test. I am soooo grateful for CBD and gabapentin! Without them, it was a miserable three days. I worried about experiencing pain during the tests and also about the possibility of having flashbacks, as I would be strapped down for two hours.

Yes, there was pain, but no more than I had before the tests began. And zero flashbacks! What a pleasant surprise. The techs were nice, and they talked a lot. I could ask a question when I felt myself drifting away and restart a conversation, so I felt very much in control.

I like the matter-of-fact way that I disclose these days. So simple: 1. the possibility of flashbacks, 2. because of a shitty childhood, and 3. talk to me – your voice keeps me anchored in the present.

Okay, so what I know at this moment, before reading the after-visit summary, is that my autonomic nervous system can no longer control my blood pressure and cannot tell me to sweat in response to heat. I now like the winter temperature to be ten degrees warmer than I did two years ago, so I guess my ability to adapt to temperature is faulty. There are other symptoms I have that may or may not be caused by dysautonomia.

I know something else. Like much of the psychological and physical damage done by ritual abuse, dysautonomia cannot be fixed and cannot be healed. But there are things I can do to manage the symptoms and make them less bothersome. I have this attitude toward the sequelae of ritual abuse – I cannot heal the damage, but I can live with it in a different way. Everything I have learned over the years will come in handy, I am sure.

I realize I will be devoting more time to self-care. I will exercise more and pay more attention to my diet and the timing of my meals. One lovely thing is that I have been told I need a high-salt diet. After all these years of deprivation, I can indulge in potato chips without guilt! And I can start using salt when I cook – I wonder whether I will love or hate eating salted veggies and pasta. We shall see.

More self-care, hopefully, will result in feeling better. That’s a big plus. On the minus side, though, it will leave less time for all the things I love. Working with GrassRoots, mentoring, supporting new projects, rewriting material on the website, answering email, and hanging out with old and new friends. It’s going to take time to find a new equilibrium.

I’ll keep you all posted.