My Life "Plans" Have Been Reduced to, Basically, Just a Blob: A Spoonie's Thoughts from May

It's the end of the month, already? Where did the time go?! I have SO many jobs on my to-do list still itching to have a line scratched through them. Do you ever feel like there's just too much to do and not enough time to do it all? Or is that just me??

Well, those jobs will just have to wait a little bit longer, 'cuz today I'm busy blogging! To wrap up this crazy month of quarantine and final exams, I decided to join the awesome link-up party going on over at A Chronic Voice. Time to dive deep and share my thoughts, y'all! Here goes:

1. FORESEEING
Who else out there is a control freak? I always want to know EXACTLY what the plan is and exactly how I fit into that plan. By the age of thirteen, I knew exactly what I wanted my college major (and minor) to be, exactly how many kids I wanted to have, and exactly everything about every other detail in between. My life was all mapped out and I simply had to put in the work to make my dreams happen.
Then one day, God must have taken a look at that bullet-point outline of my life and laughed until His sides hurt. Next, He decided it was time for me to learn a little bit about trusting Him instead of myself. So that's how my puny little plans saw the warmer end of a blowtorch. My dad lost his job, my family fell apart, and everything just kinda went downhill from there. And then I thought it couldn't get worse, but it did. Chronic illness hit my body like a truck while a deep, dark depression wrapped its tendrils around my mind. 
Fast-forward to today. Some things are better, but other issues in my life remain as broken as the day they started. My chronic illness, for one thing, has decided that it is here to stay. Yet at the same time, I've also been granted blessings which I never would have expected or deserved in a million years. 
All this is to simply say: I have absolutely no idea what I foresee in my future.



Just take a deep breath and go hold a fuzzy baby goose.
Because everyone raises baby geese in their backyard... right?
Oh wait, maybe that's just my family!! :D

June marks my twenty-first birthday. I'm not thirteen anymore and I definitely don't have my life all planned out anymore.
But you know what? That's okay.
There's nothing wrong with living life one day at a time. Especially when the population of the world gets hit with a huge, mysterious pandemic that spreads fear and panic faster than the virus itself. It's okay not to know everything during this time. Instead, just breathe. Stop worrying for a moment and look around you. Smell the spring flowers and hold a fuzzy baby goose. Enjoy today just for today, and let tomorrow deal with its own troubles. 
Now, I definitely still have one eye on the {very fuzzy} future. I'm still studying hard to earn my college degree. I'm still saving money so I can someday gain some semblance of financial stability. I'm still investing in relationships with the people whom I love. And I'm still trying, as painful as it may be sometimes, to grow deeper in my relationship with God. These are the things in my life that will never change.

But apart from those things, it is my goal to set aside my control-freak tendencies. I don't want to waste my precious energy by making plans that are just gonna get derailed anyway. Because here's the hard truth: My body's absolute unpredictability makes my whole life unpredictable. Even just this morning, the simple task of picking spinach in the garden got cut short when my legs abruptly decided that they were too shaky and weak to support my body anymore. And just like that, my plans for the day were obliterated and I spent the next five or six hours in bed. 
I never know when my POTS is going to rear its ugly head and trash my plans. So I've honestly kinda learned not to make too many plans in the first place. My life "plans" have been reduced to, basically, just a blob. But I rest assured, because I know that my Father in Heaven does have a plan for me. And that divine plan for my life is so much more perfect than anything my little brain could ever concoct. 
2. UPBRINGING
I was always taught to be tough. 
"Oh, you fell off your bike a scraped your knee? Well, crying about it won't fix anything. You know where the peroxide and band-aids are -- go inside and fix yourself up." 
Now, don't get me wrong. I truly love my mom, and she has many great qualities. However, sympathy for my hurts wasn't exactly her strong suit when I was a kid. 
And I learned from her. I learned that pain was a bother, that blood was an inconvenience. I learned to silence my body's messages because I thought they weren't worthy of being heard. I was a tough girl. Nothing could break me.

And then... it did. My POTS started subtly enough, but I didn't listen. I figured I was just a normal sleep-deprived college student. So then my POTS decided to make me listen. It hit me in full force and left me utterly, completely broken. And no band-aid in the world was big enough to fix this new boo-boo.
Today, I have learned to play a strange balancing game. On the one hand, I ignore my pain and dizziness and aching and everything else going wrong in my body at any given moment so that I can at least pretend to have a normal life.
But on the other hand, I've learned to always be acutely aware of the sensations swarming my mind. Every new symptom I feel -- every muscle spasm, every headache, every blackout -- receives careful evaluation: Is this nausea on my "normal" spectrum, or is it worse than normal? Do I need to call my doctor? What about this blasted headache -- is that a new feeling, or is that just another old familiar symptom for me?
Each day is a struggle as I play this brutal balancing game. If a symptom is new or worse than before, I talk to my doctor and run some tests. I don't want to miss something that could easily be caught by my doctor. But if the symptom is just another part of my everyday POTS journey, I don't bother my doctor. He's already helping me as much as he can, anyway. I just take my medicine, drink a huge glass of water, and tough it out. Just like I did when I was a little kid. 
3. SOOTHING
The panic of quarantine. The stress of final exams. And the annoyance of more doctor appointments than I expected this month (Apparently I have a cyst in my wrist?? So my body is just making little bubbles inside itself... cool.). Needless to say, I've been desperate for a little soothing this month. 
As much as I would rather not admit it, let's be honest here: my first coping mechanism is Netflix. But endless quarantine means endless Netflix, and I can only binge-watch Riverdale for so long. 
So I've been trying to steer away from the automatic habit of pulling up Netflix on my phone and checking my brain out for the day. Instead, I'm trying to find activities that are soothing but also constructive. Here's my top three:

1. Turning off distractions and focusing on God. I wish Bible study was my automatic coping mechanism, because it definitely heals my mind a whole lot more than Netflix ever could. Time to make new habits, right? Lately I've been reading a free devotional from Matt Redman called 10,000 Reasons. I also just bought a new guided prayer journal last week, and I've already started inking up its pages. It's so satisfying and so healing at the same time. 
2. Getting covered in fun paint colors. I absolutely love the satisfaction of signing my name on a finished painting. I know it's not April anymore, but this month I just discovered The Art Sherpa's free collection of Acrylic April 2020 tutorials. And I'm loving it! I love listening to quiet music or nature sounds while I focus my mind on the colorful pigments my brush holds. Sometimes, though, I'm not sure if I get more paint on myself or on my canvas. That's what showers are for, right? Oh wait... I don't have the energy to take a shower. Guess I'll just be covered in paint for a bit! :)
3. Breaking a sweat on my yoga mat. I used to love running, but POTS took that away from me. So after two years of forgoing exercise, I've decided to kick that lazy, lie-around-all-day-and-not-move habit. After a quick YouTube search, I found Yoga with Adriene's free 30 Day Yoga Journey for 2020. I'm taking things slowly and carefully (definitely gonna take me a bit longer than 30 days), but I am pleased to already feel just a little bit stronger than I was last month. So that's my goal: one step at a time. One step at a time is one step closer to my goal than I was one step ago. 

All of this sums up just a small peek at what I've been up to this past May. I'm feeling hopeful as the calendars flip to June. Guess we'll have to wait and see what comes next, right? I can't wait!

In the meantime, my friend, stay strong. Try not to stress out too much about whatever is around the corner for you. Regardless of what comes, I'm praying for you.

Bonjé

__________

P.S. How would you respond to the writing prompts of foreseeing, upbringing, and soothing? How are you feeling about the month ahead -- hopeful, anxious, overwhelmed... or all of the above? Join the conversation in the comments below!

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My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six

Hi there! If you missed the earlier snippets of my story, no worries! You can catch up here:

I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

The Most Terrifying Night of My Life: My POTS Diagnosis Story, Part Two

Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three

My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four

Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five

I was faking.
I had to be.
It was the only way my symptoms made any sort of sense.

Some doctors said it in a kinder way than others, but each doctor eventually reached the same soul-crushing conclusion.

I became an expert at reading the facial expressions of each new doctor. Initially, each new appointment would start out well with a professional sit-down-and-tell-me-what's-ailing-you face. Then I would get the we'll-do-a-round-of-tests-and-get-to-the-bottom-of-this look. Perhaps at some point I'd even be granted a wow-you-must-be-really-strong-to-deal-with-this look. But without fail, by the end of our time together, each doctor's face would eventually reflect the only-a-psychiatrist-can-help-this-girl expression.

My case wasn't helped by the fact that my symptoms noticeably worsened after a spring break's worth of family drama (I've since learned that these flare-ups are totally normal in POTS patients under stress, but at the time we had no idea what was going on). So we eventually succumbed to the pressure from my doctors, and my parents paid for me to start seeing a Christian counselor. We honestly had no idea if counseling was the answer to my problems, but by that point we were running out of other viable solutions.

My counselor did her job well. She listened to my long story about doctors and health issues and fear of never finding answers. Then at some point, our conversation transitioned to discussing emotional trauma from my childhood. The pain I held from years past was still as raw and real to me as the day it happened, and I wasn't able to speak of the past without bursting into tears. That day I was able to tell my counselor things which I had never dared breathe to another soul. Thankfully, my parents (to whom mental illness was a slightly foreign concept) recognized just how much I needed counseling and paid for my sessions to continue.

After a few meetings, my counselor voiced her suspicion that I was suffering from Conversion Disorder (also known as Functional Neurological Disorder). Yet she also encouraged my parents and me to pursue further medical testing. I appreciated her caution. Unlike my doctors, my counselor didn't want to just assume that the cause of my symptoms was solely psychological.

However, while we continued to search for medical answers, my counselor was more than happy to help me sift through the mountains of emotional baggage which I was hiding from the world. My meetings with this counselor were intense. Although she was unable to heal my body, she helped heal my wounded soul more than I ever thought possible. And she didn't just encourage me to talk about wounds of my past; my current struggles were relevant too. My counselor became one of my biggest cheerleaders as I learned to face life with a chronic illness.

And by then I definitely needed every cheerleader I could get, because my life had transformed into something I no longer recognized. The social butterfly with friends at her side and dreams in her eyes had disappeared. Instead, I spent most of my time curled up in my bed desperately trying to recover from the fatigue of spending two or three hours sitting in class. I no longer dreamt of the future. Just surviving one or two days at a time was a battle which seemed impossible to win.

It took every ounce of my strength and willpower to keep fighting that battle. I remember especially hating anything relating to the medical world. I didn't want take any more pills. I didn't want to go to any more appointments, didn't want to see any more doctors, didn't want to keep searching for a diagnosis. I just wanted to bury my head under my blankets and never ever come out again.

While I was busy hiding from the world, my dad kept making appointments for me to see more doctors and have more tests done. Since we hadn't been able to find answers in my hometown, my dad started researching other doctors in other cities who could possibly help me. He made appointments with more doctors than I honestly care to remember. I was annoyed by his persistence, but at the same time it comforted me to know that he was fighting for me even after I had given up.

This was the night before my Mayo Clinic appointments.
I laid on the couch, attempted a smile, and wondered...
Will tomorrow finally be the day I find my diagnosis?

One batch of appointments my dad made for me was at Mayo Clinic in Minnesota. So after months of waiting for appointment day to arrive, my dad and I took a seven-hour road trip to Mayo Clinic. (He drove while I alternated between sleeping and staring out the window; I was no longer allowed to drive because of my seizures.)

By this time I had grown used to the disappointment of not receiving answers from any of my doctors. But all the way to Mayo Clinic my mind kept churning over this thought that maybe... just maybe, the doctors here at this prestigious hospital might be smart enough to find what is wrong inside my body. 

One of my scheduled medical tests at Mayo Clinic was a sleep-deprived EEG. To take this test, I first had to achieve a state of sleep deprivation. So after a long night of bingeing Netflix from the couch in our Airbnb, I dragged my exhausted self into the car shortly after the sun came up the next morning. I remember feeling completely icky and nauseous and shaky all over from lack of sleep. Once we arrived, my dad helped me navigate the many beautiful halls and wings of Mayo Clinic. I finally found the correct waiting area, checked in, and sat down to wait. (And I was so tired by then that I definitely snoozed a bit while I waited.)

I was eventually taken to an EEG testing room, where I sat while the nurse scrubbed little spots on my head until my toes curled. Then the nurse glued the EEG electrodes to my scalp, helped me into bed, and turned out the lights. Alone at last, I curled up under the thin hospital blanket and went to sleep.

When my test was over, I remember the last thing I wanted to do in the entire world was wake up. The lights were too bright. Why can't doctors ever just let you rest for a bit?

Anyway, I kept my eyes open long enough to hear that the results of my test were completely normal. And unless I wanted to admit myself for a more extensive, week-long monitoring, this doctor was done helping me.

The sleep-deprived, zombie version of me then struggled through a few more appointments, but every single test result showed the same thing: my body was 100% disgustingly healthy. Nothing wrong with me. That is, except my mind. My doctors all agreed that my mind needed help.

Because they had no other answer for me, my doctors referred me to Mayo Clinic's center for behavioral health. Amazingly, my dad was able to make a next-day appointment for me with one of Mayo Clinic's doctors who specialized in psychiatric spells. I didn't want to go, but Dad said I should at least go to the appointment and hear the psychiatrist's advice. We didn't think anything would come of it, but we just had to wait and see.

Then my dad drove me back to our Airbnb, where I locked myself in the bedroom and cried my eyes out. I was too upset to sleep. Although my body was still sleep-deprived, I wasn't tired. I was angry. Angry at the doctors, angry at my body, angry at myself, angry at God. My mind raged with the frustration of yet another dead end. Why had I ever let myself get my hopes up? What made me think these doctors would be any different from all my other doctors? Why couldn't I find any answers? Why, why, why? I cried and prayed and raged for what seemed like hours in that tiny little Airbnb bedroom.

Eventually I fell asleep. And the next day, I kept my appointment. I was given a full mental health evaluation at the clinic. My psychiatrist, who was extremely kind, diagnosed me with four things: Major Depressive Disorder, Persistent Depressive Disorder, Generalized Anxiety Disorder, and Panic Disorder.

And based on my evaluation and on the fact that we had no other medical explanation for my seizures, my psychiatrist also diagnosed me with a fifth item: Functional Neurological Disorder (FND; also known as Conversion Disorder) with Psychogenic Non-Epileptic Seizures. Basically, my psychiatrist told me that the trauma I had experienced as a young girl was now manifesting itself as physical symptoms within my body. And the only way to cure those symptoms was through counseling by a licensed therapist.

[Please note: FND is actually a real illness with real physical symptoms, and I am not trying to belittle anyone's struggle with FND. I was given very, very little education by my doctors about this illness, but have done enough research to know that this illness is not at all just "in a patient's head". My more recent POTS diagnosis, however, rules out my previous diagnosis of FND.]
___________________________

I do not deny that I struggle with my mental health. The first four diagnoses from my psychiatrist were absolutely correct, and I am now on medication and in therapy which helps me manage those conditions.

But I have since learned that many of my physical symptoms (confusion, weakness, fatigue, dizziness, near-syncope, non-epileptic seizures, etc.) are not just because of mental trauma. The symptoms that I experience every day do have a true physiological explanation. I don't need a psychiatrist for my seizures; I need a cardiologist. When I feel lightheaded and confused, I don't need to practice grounding techniques; I need to lie down because gravity is literally starving my brain of blood. And when I am perfectly happy but my heart keeps racing, I don't need another anxiety medication; I need medication to raise my blood pressure.

But back then, I didn't know that I had POTS syndrome. Functional Neurological Disorder (FND) seemed to be the only explanation I would ever get. I was too tired to keep pushing for a different answer that I might never find. I was done fighting. So as much as I hated my diagnosis, I buried all my doubts and determined that I would make the most of this brand-new diagnosis.


I took all of my psychiatric medications, even the ones that made me feel worse instead of better. And every night I stayed up late researching the heck out of FND, trying to learn new ways to fix my illness. I went to all of my counseling appointments. I practiced coping methods as I trudged through the trauma of my past over and over. And I stared my demons in the face and told them to go back to the hell where they came from.

My depression and anxiety improved, but my other symptoms did not. So I came to the conclusion that I must not be trying hard enough. I was obsessed with the idea that I was the only one who could fix myself. If only I can find the right switch, the right trigger in my mind, then I will be healed. I began to blame myself for still being sick. This led to more depression, more anxiety, more confusion. Some days, I just gave up. Other days, I tried to drag myself out of bed and keep fighting. Every day, I blamed myself for the illness that none of my doctors were able to identify.
___________________________

Come back next week to hear about the day I got my CORRECT diagnosis! (At least, I'm hoping it'll be next week. I've been dealing with a bit of a flare so my writing energy has been kinda compromised lately.)

Update! Read my final post in this series here:

Finally, An Answer: My POTS Diagnosis Story, Part Seven

As you face this coming week, stay healthy and strong. And stay at home. I'm praying for you!

Bonjé Gioja

P.S. Have you ever reached the point where you were so tired of fighting that you just gave up? Do you recommend taking medications for mental illness, or do you prefer to tackle things with natural remedies? Let me know in the comments below if you have any tips for staying sane during this quarantine! :D


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