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?