Bear with me…I’m trying.

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I haven’t written much over the past few days. Things have been pretty hectic, traveling all over Atlantic Canada for medical appointments. Traveling can be the worst, especially when you’re a neurotic worry wart such as myself. Also, I’m trying to come to grips with some things I’ve learned about myself. As I mentioned in a previous post, I recently went for a psychological assessment. I’ve received two main diagnoses: Conversion Disorder (Functional Neurological Symptom Disorder) and Somatic Symptom Disorder. I’m struggling with understanding what all this means.

atlantic-canada-map
Atlantic Canada- We’re on top of Maine.

So Functional Neurological Symptom Disorder (FNSD) is not a new diagnosis for me. It does fall in the spectrum of Psychogenic Non-Epileptic Seizures (PNES) although the acronym is not as much fun as saying Pee-Nes (get it, it sounds like penis.) Other terms like Conversion Disorder, Dissociative Disorder and Pseudo-seizures are used interchangeably by medical professionals, but they all mean the same thing. Although I have a “normal” brain (what is “normal” anyway?), there is a problem with how my nervous system functions (https://fndhope.org/fnd-guide/). Generally, my brain has some communication problems. Ironic, really, since I consider myself to be a very good communicator. It results in involuntary face contortions, tremors, seizure-like episodes (I say seizure-like because I don’t pass out.) It presents differently in different people. Some people may fall on the floor and have an all-out seizure that looks epileptic in nature, but they are not, in fact, epileptics.

Somatic Symptom Disorder is where a person focuses on physical symptoms and has high anxiety about health concerns. Well, yes, I do have some anxiety about my physical symptoms. Who wouldn’t? Somatic Symptom Disorder seems to be just a nice way of saying I’m a hypochondriac. I’m not going to dispute that. I do worry about my health excessively- the seriousness of symptoms, and I probably spend too much time worrying about it- as maybe I am in this post.

But the main thing for me is the FNSD. I unconsciously (this is in the report; I feel the need to add this because if it’s unconscious, how would I even know that I have it?) have striated muscles and tension when speaking about topics that cause me distress. I have unconscious anxiety (again, in the report) which leads to fuzzy thinking or cognitive dysfunction. I also have an inability to deal with conflict. So yes, I’m fucked up.

The most surprising thing I discovered is that apparently I am unable to express feelings. I have a basic mistrust of people. Do I? I didn’t even notice. I’ve often been told I am too trusting. But when I really think about it, I’ve always valued logic and reason over feelings. I do try to detach my feelings when making decisions. And because I do hate conflict so much, I don’t share how I feel. At least not with the people I’m in conflict with. I’ll rant about them later, behind their backs. You know, like a back-stabbing bitch. Not on purpose though. I’m not a back-stabbing bitch on purpose, I’m just a coward.

Funny thing about feelings though… I have them, I think we all do. But I can’t accurately identify my feelings. I know, it sounds weird. I keep thinking about my assessment and multiple times the psychologist asked me, “And how do you feel about that?” and each time, my response was, “not good.” He pressed me to be more specific. Did I feel angry? Sad? Whatever. And some of the time, I gave the answer I thought I should give; I thought, well, I should feel angry about that, so I’ll just say angry. But how did I really feel? I don’t know. “Not good.” I don’t know if it’s angry, sad, irate, hopeless. As I write this and I try to even think of feelings to write down, I can’t even think of very many feelings. I just know that I want to feel happy. Maybe that’s why I’m so drawn to comedy- laughing feels good and it pushes down the pain.

Next step for me is to go for some psychotherapy. I guess I need to learn about feelings, how to feel and how to express feelings in healthy ways. If I can do that, maybe I won’t spaz out anymore.

I invite you to join me on my adventure of learning about feelings. Boy, doesn’t that feel like a good topic for a children’s book. Maybe I can write a book for children after this. It will feature me represented by a chihuahua and it will be all about the different feelings people should have and how if you don’t express them, you’ll be like

shaky
Shaky the Chihuahua

Shaky the Chihuahua. Shaky will be joined by Bellowing Bear who yells all the time because he’s angry. Bellowing Bear gives Shaky the shakes all over. All the different feelings can be represented by different animals. Any children’s book editors out there? You FEELING this? Contact me. I’ll be ready to write it by March 2018. I’m supposed to have gotten all of my feeling training by then.

Bear with me. I’m trying…

Much love (that’s a feeling!)

OH

 

 

Chihuahua image:

Alexandra. “7 Things that make Chihuahuas an Amazing Breed.” Animals.com. <https://animalso.com/breeds/chihuahua/&gt; November 25, 2017.

Atlantic Canada Map from Google Maps.

Playing with PNES

By Ocean Hayward

Anxiety. ADHD. PNES. Okay, you’re probably all well versed on the first two, but the last acronym is probably not as familiar. About a year and a half ago, I was officially diagnosed with Psychogenic Non-Epileptic Seizures (PNES). I always like to joke that, yes, it is an acronym that if stated phonetically would sound an awful lot like penis. Pee-Nes. Just my luck. I don’t typically share my PNES with most people. I used to because the seizures were so frequent that I was afraid I’d have one in front of people. I’d rather them know up front why I’m shaking and trembling like a person during DTs so I don’t alarm anyone.

I started having seizures about 8 years ago. They aren’t fall down, unconscious on the floor-type seizures. They are tremors, twitches and jerking motions that I have no control over. They can last for a few seconds, to a few minutes, to a few hours. It all depends where my state/ level of anxiety is. During the attacks, my blood pressure elevates as well. My seizures are my body’s way of dealing with extremely high stress situations. I’m not sure why it reacts with seizures. Maybe it’s because I tend to be a quiet person, especially when it comes to how I feel. I try to avoid conflict as much as possible and when faced with the anxiety of having to confront someone, that tends to set off the seizures quite a bit.

Certain situations are much more stressful than others. A big one for me is crowds. I hate crowds. Over the summer, my husband and I were walking along the Saint John waterfront and it was “Saint John Idol” night. You know, like American Idol? But with Saint Johnners singing instead. For whatever reason, the whole “Idol” show concept is still surprisingly popular in Saint John, even though in every other place in the world the craze has fizzled out.  It seemed that everyone in Uptown (That’s right, every other city/town has a “downtown” but Saint John has an “Uptown,”) and surrounding areas had amassed into this tiny closed-off-to-vehicles street. Some idiot (because it should be called Saint John Idiot/ American Idiot, in my opinion) was up there singing their heart out and I was stuck with my husband trying to walk on this street through the crowd of both people standing still and watching the Idiot and people also just trying to use the street as a through-way to another part of town (like my husband and I). I started to feel the panic because of all the people around me. My husband was behind me and he could see my body jerking, shaking and trembling as I tried to keep my calm. If I’d been asked to rate my level of panic, it would have been a 10+.

Suddenly, I couldn’t stand it anymore; I needed to be out of that crowd and quickly. You know how they say to stay calm in emergency situations, like if you’re in a crowded building that’s on fire? I was that person who panics and pushes through and stomps on people and kills them. That was me. I was pushing people out of my way in a mad dash to get the hell away from all the fucking people! I don’t remember much about it other than my feeling of panic, but I’m sure I pissed a lot of people off. Although perhaps my panicked voice saying to my husband, “I have to get out of here” made them sympathetic. All I know is my husband grabbed me suddenly by my waist and pushed me into a pub, and out of the crowd. I was still seizuring, but I was out of the source of my anxiety. In about 2 hours, it was as if it had never happened. But it did.

The worst thing about having PNES is I never know when something is going to happen that will spin me into a frenzied state of nervous energy. It’s unpredictable. Some people with PNES can never hold a job. I am determined, however, to beat PNES. (To improve the humor in the piece, read PNES phonetically in the last two sentences.) Where was I? Oh, yes, I will beat PNES. Er… I will overcome PNES. I have strategies. I use self-talk to calm myself down. I try not to take on too many things at once. I try to make sure I take time to take care of myself. I take drugs. Lots of prescription drugs. And I try to always find the humor in life, even in my PNES. The most important thing I’ve learned on my journey with PNES is that I have to put myself first, and keep myself healthy. I’m no good to anyone else if I’m not good to myself first. And on that note, I’m going to go play with my PNES.