Thursday, February 8, 2024

Being a Highly Sensitive Person with ME/CFS

I've known for a while that I'm a Highly Sensitive Person (HSP). I think because of it, I've built up a lot of defense mechanisms and walls in my life to protect myself from too much stimuli. I appear judgmental, stubborn, and maybe even a bit of a zealot. I am fully aware I come across this way, even though I am kind and loving towards people. But I also think it makes me much more in tune with my health. I read my own body well, and doctors have often commented on it with surprise. It also makes me able to communicate clearly, and that's partly why I need to write so much!


Being a HSP means that I'm easily overwhelmed by stimuli. I read energy from everything: people, the soil, trees, animals - everything. I feel the energy these things emit in my soul. It also means that lights, smells, noise/music, and physical feelings give me a ton of stimulation. The music playing needs to fit my mood or it will make me agitated, because music has a really profound impact on how I feel and think. If lights are too bright I'll start to feel dead inside, like I'm shutting down. The way fabric feels on my skin can make it really hard for me to think of anything else.

When I was younger I thought all this talk of energy and vibes was really hippie/ immature/ "spiritual" in a bad way, and so I actually fought against it. I thought it was going to lead me astray, off the straight and narrow path I was supposed to follow as a Christian. As a result, I acted in really strange ways at times. I was feeling sensitive and didn't have the tools to deal with it, so I had moody reactions or said "no" to people, acting really holier-than-thou about it. I remember having emotional meltdowns that I couldn't put into words, which was strange because I was usually a fairly even and stable person.

I remember one time when my best friend asked me to listen to a song that meant a lot to her, and I told her no. I refused to listen. She asked me why, and I couldn't explain why - I didn't even understand. So my lack of explanation made her try to force the song on me, but I blew up and yelled at her, refusing to listen. She was angry with me, and rightly so. I later listened to the song and liked it, and I tried to apologize to her, but she didn't want to hear it. Why was I like that? Well, because I'm too sensitive and I didn't have the tools or knowledge to handle it. 

So, over the years, I've learned what works for me. "Safe" things. I fight hard for things I've found that work well for me. Diets, supplements, types of lights, types of fabrics, music, smells, water temperature, etc. These things are "safe" for me. While I'm interested in learning about other things, or even trying them out when I'm feeling stable and grounded enough, I don't want anything that isn't safe for me in the moment. One day I might feel strong and stable and want to be adventurous and try something new. The next, absolutely not - let me put my headphones on and listen to the same album 5 times in a row while I block out the world. 

Once I finally read about HSP and realized I am one, I saw patterns and defense mechanisms in me that formed from being a HSP. Then I learned that my personality type is INFP 5w4, (Any article I could find on this was full of an overwhelming amount of ads, sorry.) (If you don't know about MBTI and Enneagram types, click the links. I took these tests officially in college, I didn't use these free online versions.) I'm a really odd duck, and very few people have my personality type - especially women! My 4 wing is delighted by this (4 loves to feel unique), but my dominate 5 (grounded observer/ researcher) finds it really frustrating. I'm not a well-researched personality type, so therefore I have to observe and record myself to learn about myself. The more I observed my own patterns and defenses, the more I realized why I am how I am and it all begun to make sense. 

This deep-dive into examining my personality helped me learn how to stop feeling so stimulated from everything. I learned how to create a bubble around me so I could be in public without getting drained by everything. When I was younger and had energy, I enjoyed the stimulation most of the time. I felt like life was an adventure full of things to experience and feel deeply. So I didn't use a bubble back then, I fully experienced everything. I think a lot of people liked me because of it, until I felt overwhelmed and became very blunt with my words, accidently insulting people. 

These days, since developing ME/CFS and having almost no energy, I can't simply enjoy all the stimuli of the world because it drains me rapidly. I had to learn to create that bubble to protect myself. The problem is that the bubble doesn't always work very well. It makes me feel super introverted, detached, and selfish. It protects me from feeling the world around me too much, but it causes life to lose its charm. 

And so I feel rather... bland. I feel like I'm living life in black and white, when I have the ability to see life for all its colors. This leads to me not expressing my feelings, not going out and enjoying things, and feeling rather depressed. Being a HSP requires A LOT of energy to process everything, and if I can't process it because I don't have the energy, I feel like I'm lost and world feels so far away. 



I've found that I can strike a balance and thrive when I'm in safe places. The more familiar I become with people, stores, brands, artists, etc, the less I need my bubble up with them. Familiarity leads to predictability. This bothers me about myself because I love to explore the world, learn about different people and cultures, try out different foods and experience life. But, familiarity means less stimulation. It's a filter I can rely on to prevent myself from getting overwhelmed. I'm very loyal to what I'm familiar with... even when it's not necessarily the best option for me.

It's really a crazy thing how I have an energy metabolism because of my personality type, then chronic illness on top of it. I've talked to many people about this, and they are often confused because they have never had to think about this. I view everything I do as transactional: how much energy does it cost? How much energy will it drain from me? How much energy is worth spending, and do I gain other benefits from spending it? Most people still have the ability to "push through" even while tired, so they don't need to think through the energy transaction. "Pushing through" causes something called "Post Exertional Malaise" or PEM in me (basically, I have to recover from spending energy and I'm not able to do anything while recovering... and I feel like I have a mild flu during it.)

So... this blog might make it sound like being an HSP is a burden to me because I have ME/CFS too.

I don't think I view it that way. I think it's a gift. I think I have the ability to experience life in a really intimate and beautiful way. I think I have the ability to find meaning in anything. I think it makes me a little slow and hesitant, and probably caused me to be a late bloomer in life. I'm too busy smelling the roses and learning what they have to teach us about the meaning of life, while everyone else is running forward and advancing in their ambitions. I think it's why I'm not ambitious. I think my gifts come from fully experiencing the world instead of trying to win at the game of life. The problem is... I really need to find a way to use these gifts to make money.... hahaha! That said, I was always really good in school or in jobs. I never had problems performing well. 





What are my traits as an HSP INFP 5w4? Let's break it down:

- I will research the heck out of anything that I have strong feelings about. (But I couldn't care less if I'm not emotionally involved.) The trouble is that ME/CFS can make it really difficult to read or comprehend, which leads me to feeling really frustrated and depressed. 

- I should be able to master things, because I have the ability to get really good at skills I put effort into. The problem is that I value perfectionism... and I tend to be sloppy. I get frustrated with the fine details and I rush through them just to get to the big picture. I see it in my drawing and art. My vision is rich with detail, but my execution shows a lot of laziness. It really bothers me about myself. ME/CFS amplifies this to a degree that it prevents me from even trying. I rarely draw anymore and I used to draw all the time. 

- I always assume I'm a student, never a master. This gives me imposter syndrome in everything I do. I'm constantly questioning my expertise on anything. I never feel like I know enough about anything, therefore I never feel like I can call myself of a master of anything. (And I have found that I know some things way better than other people who do them and make money doing them.) I have to get out of my own way! ME/CFS has made me feel like it's pointless to try anyway, because feeling like an imposter is worse when I feel like a tired imposter. 

- I have a mind for rules, sequences, logic, and protocol... but it's drowning in a pool of feelings that I always consult first. My dominate cognitive function is Introverted Feeling, so all my thoughts are filtered through how they make me feel. If I ignore feelings then I can become insensitively factual, like a walking encyclopedia (I've been called this before.) Programming languages made sense to me, but bored me because I never advanced enough to make artistic or emotional expressions with it. I'd probably be phenomenal at making story-driven video games if only I had the willpower to learn. (But math? I HATE math. Numbers are always a scramble in my head - they don't make sense! It's like I'm dyslexic only with numbers.) So imagine being too tired to think logically because of ME/CFS... my brain turns into scrambled eggs! I confuse myself often... 

- Morals and ethics are super important to me. I'm always analyzing the "goodness" of choices, and how we can improve to do more good, or do good in a better way. I'm sometimes too much of a morality zealot though, and it prevents me from becoming friends with people... I have the ability to make people feel very judged. I'm such a kind person, but I have a tendency to unintentionally stab people right in their moral compasses. Sorry... I honestly am not trying to be judgmental, and it doesn't mean I think people are "bad." I think we all have room to grow and sometimes I issue challenges to grow... it means I care! ME/CFS doesn't change this about me... but it does lead to me being really blunt, because I get too tired to finesse my words to sound kind instead of judgmental. 

- I read people, and quickly. When I talk to people I put myself into their perspective to understand why they say what they say, and I often end up acting too understanding of people I disagree with. (Unless I'm overwhelmed or too tired, then I tend to speak definitively and guarded without being considerate.) I can debate really well when I'm passionate, but I still see the other person's perspective. Interestingly, ME/CFS can cause me to listen and believe people without much critical thought. I'm too tired to anything but accept what they say, until I get the chance later to reflect on their words and process them. 

- I love fantasy and sci-fi stories with rich characters and moral dilemmas for me to organize! (But I have to consume the story quickly enough before my mood changes and I want something different to consume.) Especially with ME/CFS, because I need to enjoy something completely before the next crash, or I'll take weeks to recover and begin to forget details about the stories. I'm currently reading a book I love, but I've been unable to read it for 4 months... I feel like I need to start it over from the beginning because I can't remember details. 

- I love when people know themselves well enough to express themselves in how they dress or groom themselves, because I'm attracted to honesty and sincerity through self-expression. (But I'm also highly judgmental when it looks fake, and I tend to dress bland because I don't want to feel like I'm trying too hard too.) I love sincerity and hate fake. 

- I get bored and distracted easily. It's not due to attention issues (I don't have ADHD.) It's because I find so much in life to be shallow, uninspiring, and not worth my energy. When something catches my attention, I can focus and analyze it deeply. I can talk for hours about one subject. (But I am so bored when people just want to talk about superficial things, or when people don't have the ability to talk deeply about things.) ME/CFS gives me the excuse to tell people I'm too tired to listen, thankfully... ha. 

- I CRAVE deep soul-bonding connections. If you and I can talk soul-to-soul, I'll love you forever. The problem is that many people don't know themselves well enough to do this. People have to develop emotional intelligence, spiritual integrity, and a strong moral center to be able to speak from their souls. We live such a fast-paced world with too many distractions, it's actually really difficult for people to learn about themselves and their passions. So many people are constantly being entertained by short videos online in all their free moments, and they're losing their connections with themselves. More and more people are feeling agitated when they're not being stimulated. I connect with people who can sit with me without needing stimulation. 

- I need to move. Going for walks and doing chores help me think and listen more clearly. I do best in jobs where I'm on my feet moving around. When I sit too long to rest, my brain goes blank. I think a big part of this is POTS, because my blood pressure goes down a lot and I lose circulation. I can day dream beautifully in a hot bath, because the heat is keeping my blood flowing. But if I'm sitting at my computer too long I feel my brain turn into mush, so I need to be caffeinated or take licorice pills to keep my circulation flowing well enough to tolerate it. I've always performed better while moving, even before I got sick... which makes developing ME/CFS even harder to deal with! 

- I feel uncertainty and insincerity in crowds of people, and that can be super draining. Crowds of people usually come with a lot of noise, smells, awkward eye contact with strangers, judgments, expectations... unless it's a concert and the crowd is unified and into the music! Seeing U2 and Florence and the Machine in concert were like religious experiences for me, because the music spoke to me and the energy of the crowd was incredible! That many people together, feeling the music together all at the same time... it was like fixing something broken in my soul. It was a unified experience that felt so big... we were all sharing the same big feeling. It's so therapeutic! I've felt the same energy at sports games too. When the crowd is unified and excited, it's the best energy in the world. I thrive on feeling connected and in harmony. 

(My own video from Florence and the Machine's Dance Fever Tour, 2022, St. Paul, MN.) 

"This is a gift! It comes with a price! Who is the lamb and who is the knife? Midas is king and he holds me so tight, and turns me to gold in the sunlight!"

U2 - Joshua Tree Tour 2018, Minneapolis, MN (My own video - I didn't take many because I was lost in the magic of the concert, so this was the best quality video I did get. The others are pretty blurry.)

"You've got to cry without weeping, talk without speaking, scream without raising your voice!"
Have I ever mentioned how much I love Bono? He's one of my favorite people on the planet right now. 

- I thrive in rules and structure, as long as I'm free to be independent. I don't conform to systems if they don't work, and if the rules don't work for me then I leave. I don't participate. I need structure, but it needs to make sense and be healthy. For instance, driving! I follow the rules of the road because it's safe and predictable, and if everyone follows the rules then traffic will flow well without problems. I get really frustrated with others who think they don't need to follow the rules and are unpredictable drivers, because I feel like they're the reason why there are so many traffic problems. I want everyone to be safe! So I don't drive in places where I can't trust other drivers. I just don't participate in that chaos. 

- I have the ability to take a step out of myself and look at all my thoughts and feelings from the outside. So, I feel deeply, but I'm able to logically process it as though I'm detached from the feelings. I think this is a uniquely Enneagram type 5 trait, and I think it saves me from becoming crushed by being a HSP. I think it also helps me regulate my INFP nature. I've met a lot of INFP who don't know how to manage all their feelings, and it holds them back from growing. My feelings do get in my way very often, but I can recognize why when I analyze myself. Then I can learn and grow. 



The amount of energy it takes me to be me is... a lot. Being so fatigued ruins my brain, and makes me feel disconnected with the world around me. It makes me feel like I'm not a complete person. Fatigue numbs my thoughts, my feelings, my senses, and my body (I get so cold!) I process the world around me based on feelings, and I clarify my feelings with my brain... but when feeling things drains me and my brain doesn't have the energy, then I just exist. I don't react well to anything. It's hard to enjoy anything. 

I never liked too much alcohol and I'm not the biggest fan of marijuana, because I hate losing control. It's nice to give my mind a break and feel my tense body relax, but I want to be able to end that break and regain control the moment I need to. Not feeling in control is a huge fear of mine.

I would LOVE to read other people with ME/CFS talk about how it affects their personalities too. I know it makes people feel muted, but that means something different in each personality type. The energy we do have has to express in some way, and I tend to express my energy through analyzing and researching things (and writing blogs to help me express.) Other people might need to express their limited energy in other ways. What parts of our personalities shine through this terrible personality-suppressing illness? 



....


Look at what all this typing does to me. Look at my hands. They are so icy cold that I'm actually having a hard time getting my joints to bend to press the right keys. I am hitting baackpace like crazy to correct allmy ammoying mistakes and so I"m lieving this esntance l,ike this so you can see how amany nistakes i keep making whle trying to teype from how freaking old my fingers arefeeling. My brain needs me to write so I can get all these thoughts out, but I'm SO COLD from all this typing! 




Tori Amos - Metal Water Wood


Eivor - Piece by Piece

Rhodes - Sunlight












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