On Brain Fog, Chronic Stress, and The Future

It’s 11:00PM and I’m laying in bed next to a snoring (adorably) Jon, feeling my heart beat in different places on my body in seemingly different rhythms all at once. My hand is pulsing slowly, my chest thumping hard and fast, while my legs seem to throb relentlessly at an unsteady pace.

Things have been weird lately. I live everyday in this relentless fog that seems to cover everything like a blanket and leaves the world with this odd and uncomfortable dream-like feeling. It started with my memory, blurry vision, occasional bouts of confusion. Now, I have days where I can’t seem to focus enough to do simple math. It’s actually rather terrifying.

After a few weeks of complaining my mom suggested I see the concussion specialist I saw for my 6/7 concussions in high school. She told me that it could be an accumulation of previous head injuries finally taking their toll on my body, or quite simply it could be brain fog.

I’m a firm believer in the latter.

If you haven’t ever experienced brain fog, let me just tell you it’s torturous. You wake up every morning groggy and semi-confused about where you are and if your dream has ended. You pull yourself out of bed and slump to the kitchen where you’ll most-likely try to put water in the cat’s food bowl before you realize that something isn’t right and try to direct yourself to the cupboard for an actual cup. If you work, like me (that’s also new), you try to concentrate while you drive yourself to work on what feels like auto-pilot. At work you’re extra tired even though your shift just started, and you sometimes forget things you’re supposed to say to the customers that you service. About two hours into your shift you begin wondering how you’ll be able to drive yourself home, as out of it as you feel. When you get in your car after your shift you automatically get anxious. You feel like you’re asleep behind the wheel even though you’re awake, wide awake even. When you get home you forget to put the car in park before you get out, and then you get mad at yourself for forgetting.

I find myself most days wishing on loose eye lashes and 11:11s for a clearer perspective.

It’s difficult.

It’s especially difficult when you feel like no one takes your symptoms seriously.

And let’s be honest, over half the time they really aren’t taken seriously…

It stresses me out. A lot of stuff has been stressing me out. At the end of May we had to put down one of our puppers, which was incredibly difficult and very sudden. She went from walking to not being able to stand in a matter of two days. When we took her to the vet they told us she was paralyzed from the waist down and that it was spreading but they didn’t know why or what was causing it. So… there’s that. I started a new job that is very social and active compared to how sedentary and isolated I spent my time in previous months. So, that’s been a big change. Mentally and physically I’m still not used to it. I started cognitive rehab for my brain fog/ post-concussion syndrome (whatever) and it is really frustrating. I basically go in once a week and pay $50 for a clean-cut woman with manicured nails in scrubs to tell me I’m doing too much and need to do less every day. Well, I work and go to summer school and have other responsibilities soooooo. I can’t put my life on hold that easily (unfortunately).

Stress takes such a toll on my body. It’s ridiculous how stressed I feel physically when I’m mentally wigging out. This week my personal favorite has been chest pains. Are they cardiac or psychosomatic? The world may never know. I’m sore everywhere every day. Last night I got up in the middle of the night to use the bathroom and wondered to myself if I had somehow broken my foot in my sleep because it was so incredibly painful to walk on. My stomach officially hates me and has decided that it’ll do as it pleases regardless of how much healthy bacteria I feed it (yogurt is love, yogurt is life), which just makes me nauseas and acidy all day and night. And to top it off, I have nightmares every single night (yikes). I have them so often that they’ve stopped freaking me out and I’ve started to become amused by them. 

The night before last I had a vivid dream where I ate rocks and then got violently sick while hanging out with John Boyega (that storm trooper from the last Star Wars movie that goes rogue). Every night it gets weirder. Last night I dreamt that I was actually dreaming an alternate universe where Jon would rather deal with the unfortunate side effects of male birth control (why don’t you exist) than be with me, and was trying to wake myself up in the dream. Which makes no sense whichever way you look at it; birth control doesn’t stop you from being attracted to people, and we had literally just had an important conversation about self-confidence and body image right before bed. Like come on brain. Chill.

Most days I just try to shake off what I’m feeling and turn it into a bad joke, which ends up being pretty unhealthy. Like, “well I’m not dead yet so I guess this is okay.” It’s not funny. I do this at work especially. Sometimes I’ll start to feel a little woozy and I’ll notice my heart rate rising to 130-140 bpm, and I’ll just internally laugh at myself. Like, “lol my stupid heart and weak body.” And it’s not helpful to think those things at all. But, for right now it’s almost an auto-response. And, because my mind is so foggy, I can’t really pinpoint when I started doing it or how. I can’t focus on stopping myself from thinking these things, because my focus in the moment is just getting through the symptoms and dodging awkward conversations about having to leave work early or needing a longer break.

I’m trying to see the bigger picture here.

I’m trying to focus on years from now when I’ll feel happier, healthier, more concentrated. But, it’s difficult to have that mindset when this fog feels so permanent and having a heart with a mind of its own feels so threatening.

For now I’m holding onto my determination to graduate college next Spring. My plan is to adopt a puppy and start my life with a fur-friend (maybe even service doggo) that same week.

Im looking forward to that.

And it’s not that far away. I just have to keep hope.

Xoxo,

How to Start Over | New Beginnings

Whoa, whoa, what’s up guys?!
I hope all of you are doing great and feeling wonderful!

Last night’s full moon has surely taken a good bit out of me and lots of other people I know! It’s so weird how something as simple as the moon can have such a large impact on our bodies and behaviors. My mom and I were in the car yesterday evening and we were both just complaining to each other about our aches and pains, our insomnia, etc. when we both realized that it was the eve of a full moon!

Yikes!

She works in a hospital and swears the emergency room volume goes up ten-fold on nights with full moons. So, good luck to her today!

Anywho, now that the full moon is waning, better times are brewing!

I’m talking about new beginnings! Who doesn’t love those?

If you follow Living with Spunk on Instagram (you should), then you know that yesterday’s story was brief but important! Whatever you’re going through, whether you’re a spoonie with dysautonomia like me or a plain jane who’s had a bad day, it is going to get so much better! Yesterday, for the first time in five months, I drove by myself multiple times! Whoa! Mega whoa! I was definitely patting myself on the back by the time I got home; celebrate the little victories! The last time I drove by myself (before this), I had a full-blown anxiety attack. It wasn’t fun by any means and it really put me off driving alone again. I was cleared to start driving again in March, but after going so long without driving I sort of just continued to avoid it. When I finally did get behind the wheel again it was terrifying! All of a sudden I was in control of this huge, heavy vehicle when some days I barely feel in control of myself! But hey, baby steps. Everything is about progress, and I’m sure as hell progressing!

I’ve come such a long way just within the last month, and I plan to go even farther.

Later today I have a job interview and I’m driving myself to it.

Nerves are high, and emotions are higher (lol PCOS). But, I am so ready to move on from being a couch potato! I have binge-watched more Netflix since I have been home than I am proud of…

I am so ready for my new beginning.

“We cannot start over, but we can begin now, and make a new ending.”

– Zig Ziglar

I had a great friend my first two years of college. We’ll call her Anne.

Anne and I grew close, very close, and I’m not even really sure how. We lived on the same residential hall and had mutual friends. Somehow, we became the best of friends. We thought we were a lot alike, but thinking back on it we were always so different and that’s what made us work. She was studious and well-mannered with long-term goals and morals. I was an anxious mess that skipped classes, raised hell about equality, and carried a very loose set of morals. She kept me in-line and took care of me when I needed someone, and I helped her relax and live a little when she wanted to. Anne and I got into a lot of arguments sophomore year, many that ended in tears. Lies, misunderstandings, and our opposing personalities eventually drove a wedge between us. We kept trying though, or at least I thought that we were. We took a trip together, and on that trip I believed 100% that we would be able to mend whatever bits of our friendship we could. However, it didn’t work out. Just as suddenly as we made friends, we parted ways.

It was a mess, honestly.

There are things I wish I hadn’t said but at the time I was still so hurt about it.

We’ve all been there.

Anne mentioned something towards the end about how during our friendship I exaggerated things to make myself seem a victim. I’m sure that at the time she was angry and maybe she meant it, maybe she didn’t. But it’s sort of stuck with me through everything.

When I met her I was, like I said, an anxious mess. I was more like a disaster honestly. I was in an unhealthy relationship, mentally recovering from childhood sexual assault, and trying to figure out the entire independence thing. I went through a phase where I was all about tattoos, piercings, blue hair, and late-nights out with guy friends (ew not like that). I had all of these feelings that I didn’t understand and I’m sure that a lot of that translated into crying in the shower, starting fights that I didn’t need to, and trying to one-up everyone in the “I’ve been through more” game. I’m not necessarily proud of that time in my life. But, it helped me grow as an individual and if I hadn’t gone through it I wouldn’t be the woman I am today; the woman who has decided to not ever be a victim again.

I think when I got sick I lost track of that part of myself. Today, Anne was on my mind and she reminded me that I’m so much stronger than this thing.

So, back to the theme of new beginnings…

This one is mine, and you can have yours too.
We could all use an Anne, right? We could all use a wake-up call.

So, how? How do we start over? How do we make way for new beginnings?

It’s as simple as deciding. A few weeks ago my mom told me that I only felt sick because I chose to. At the time, it broke my heart. I felt like she wasn’t validating my feelings and battle with my health. But, now I realize what she meant.

I can choose happiness.

She sat me down and told me a story about my grandfather, before his death, who had lived a coward a great deal of his life. She told me that when he was diagnosed with cancer he made the decision to begin living what little life he had left, and that he regretted not making the choice sooner.

Everyone has bad days, some more than others. But, it’s what you make of those days that matters. Struggling is a part of life, and it’s totally okay to not be okay sometimes. It’s okay to feel discouraged, angry, etc. Emotions are a huge part of what makes us human! Feel them!

But, don’t sacrifice your chance to be happy by relishing in the pain, your symptoms, your terrible job, etc. Yes, you might be stuck in a position that you don’t like or want to be in, but you’re just going to be miserable if you don’t adopt an optimistic and positive outlook.

I’m guilty of this, as I’m sure many of you are.

Jon and I got into a bit of a heated discussion at the beginning of this week because l decided to take on a pessimistic attitude about my illness. Jon mentioned that he believes exercise could help condition my heart so that when I have bad days, they aren’t necessarily terrible days. He thinks that exercise can help me heal. But, he got frustrated when I told him that I wasn’t interested in exercise, because… I don’t believe I’m going to get better. I finally admitted, to the both of us, that I don’t necessarily believe my condition is going to improve.

And that’s the problem.

I’ve been sitting around the house, not really trying to find a way to feel better, just sulking since January. That’s my mistake.

There are so many other things I could have done with my time, but I chose not to. I chose to sit and feel sick and feel unfortunate and to make myself a victim to pessimism, negativity, to my illness.

I have no reason to believe I won’t get better. But somehow, I suddenly chose to.

And now, I am choosing not to.

From this moment forward I am choosing happiness. I am choosing optimism. I am choosing smiling instead of crying. I am choosing strength instead of weakness. I am choosing to adopt a better attitude about my illness, my life, and the outcome of it all.

It’s as simple as that.

You just have to choose.

Mind > Matter

If you don’t mind, it doesn’t matter!

Thanks for joining me on this awesome journey.

Until next time,

The Reality of Suddenly Being Diagnosed with an Invisible Illness

Beware: this post is deep and full of self-doubt. It isn’t about inspiration and motivation, it’s raw and honest. It’s about my greatest fears right now and my struggles. It was hard to write. I’ve written and re-written it at least five times and I’m still not completely satisfied.

 


This morning I woke up feeling fearful, and I’m not even sure of what.

Lately I’ve been feeling better, physically, than I have in the past three months. My resting heart rate has decreased to a healthy level, and has stayed there for the past two days. But, that’s not to say that it isn’t going to go back up. It most-likely will.

I’m in the process of signing up for my senior year of college classes. While most students find this somewhat stressful, I find it overwhelming. I had to leave school for the last half of my junior year, who’s to say that I won’t struggle through my first semester back? I’m scared that I’m not going to be able to jump back in the swing of things, at least not as quickly as I would like.

Right now I’m trying to find strength just to enjoy things that I used to, to drive, to carry a job, to focus.

I didn’t ask for this.

I was on the dean’s list at school, working in the Student Life office on campus, a Community Advisor in the residence halls, and an overachiever with a full schedule.

I got coffee with my friends on the weekends, planned to go hiking in the summer in the mountains, and dreamed about the adrenaline rushes I’d get exploring new places.

Fast-forward three months, and I can barely leave my bed some days.

I have Inappropriate Sinus Tachycardia, a condition that won’t kill me but will make me feel “uncomfortable and “distressed (as the doctor explained it) throughout the majority of my day (Click here to read more about my diagnosis).

The reality of being diagnosed with an invisible illness, is everything seems to happen suddenly.

Suddenly I can’t do the things I used to. Multitasking on projects suddenly stresses me out. Walking around feels like running; I exhaust myself just taking a shower or brushing my teeth. When I talk fast and excited, my heart begins to race and suddenly I can’t breathe. So I have to pause doing things where I never had to pause before.

I was a lover of public speaking. A few days before my first trip to the hospital with tachycardia, I gave a presentation. I remember feeling out of breath, overly anxious, almost light-headed. I don’t get like that. I love talking in front of large audiences, it’s like a tiny adrenaline rush with every presentation and speech. My body can’t handle those little adrenaline rushes anymore, not right now.

I keep thinking to myself:

What happens when I have to do a presentation and I can’t stand or speak for long periods of time? What happens when I get stressed about a test and faint?

I didn’t ask for this. I didn’t know this was going to happen.

I’m trying to take every day step by step. But, some days it’s just so increasingly difficult to balance life and living with having this illness.

The reality of being diagnosed with an invisible illness, is that a lot of people aren’t going to take it seriously and sometimes you’re going to doubt yourself.

Since being diagnosed with IST, it’s been suggested that I’m lazy, spoiled, mentally unstable, incapable of handling stress, etc. The people who say these things range from friends, family, and at one point… even my significant other. While they aren’t wrong in all aspects, stress is hard for me to handle right now, these things aren’t the cause of my problems. It still blows my mind that after being put through medical testing spanning over a three-month time period, being diagnosed with a heart condition by a medical specialist, and sharing my story through social media and Living with Spunk, some people have the audacity to suggest that my illness isn’t real. It’s very real. I have to deal with the very real consequences of living with it every day.

Everyone seems to “know” what you need except for you. All of a sudden your friends and family are trying to be your doctors, advisors, and support system.

After hearing these things, you sort of begin to doubt yourself as well.

I doubt my ability to do a lot of things now, things that I loved doing before.

The reality of being diagnosed with an invisible illness is, some days are worse than others.

You find yourself starting to distrust the good days, because you already know that another bad one is around the corner. Which, honestly sucks.

I’m not saying that I don’t enjoy the good days, because I try to make the most of them. But it’s also hard to recognize that the way I feel on a good day, isn’t going to last forever.

It’s hard not to be hopeful that it’ll lead you back into good health. I’m an optimist.

But, unfortunately so far, that hasn’t been the case. Not for me.

I still have bad days.

They’re getting easier to deal with, so it seems, but they haven’t magically disappeared like I wish they would.

The reality of being diagnosed with an invisible illness is, you’re going to face anxiety about your situation.

I’ve always been an anxious person. It runs in my family, and we all have varying degrees of it. But I’ve always been able to understand and control how it affects me. It seems like all of a sudden, since about a week before the episode of tachycardia that first landed me in the hospital, I just can’t control it like I used to.

I still follow some of the same rules that I have in the past when it comes to dealing with anxiety, like avoiding caffeine, sticking to herbal teas, using essential oils, doing yoga when I can, and challenging maladaptive thoughts, but it doesn’t really cut it anymore. These things still help, don’t get me wrong. But certainly not the degree that they used to.

Having a hypersensitive heart means that the slightest bit of anxiety can cause a panic. Oddly enough, sometimes if I get too excited about something, it sets off a panic attack. It’s like my body can’t handle it.

For example, a few weeks ago I was in the process of trying to catch a stray cat to give it a new home. Well the night that we finally got the cat I was over-the-moon excited, so excited in fact that I experienced an adrenaline rush that led to shaking, crying, and ultimately a really bad panic attack.

It’s unfair.

I keep finding myself in situations where I’m having a full-blown panic attack for what feels like no reason.

But the more it happens, the easier the attacks are to get through (kind of like everything).

The reality of being diagnosed with an invisible illness is, you may not know if you’ll ever feel the way you used to.

I don’t necessarily know that any of my symptoms are going to go away. They could, for sure. But when? Why? How? A big problem with IST is that no one really knows what causes it, how long it will last, or exactly why it ranges in severity from person to person.

They know that some people have triggers, but it still varies from person to person.

For instance, if I eat after about 8:15pm I typically experience worse symptoms first thing in the morning. If I don’t sleep well, I experience worse symptoms the whole day.

I keep wondering:

Is this affecting my quality of life, and to what degree?

It’s a lot of trying to find acceptance in this new and unfamiliar you. Which has been particularly hard for me.

Don’t get me wrong, I’m fine.

I’m obviously not in the best shape of my life. I’ve had good days and bad days, great days and terrible days, but I’m making it.

I don’t want you guys to read this and think that everything is terrible, that I hate my life, or that I’m unhappy.

Because, I’m not. The good days make up for the bad ones, even the really bad ones. The people in my life make up for a lot, and the memories that we make together mean everything to me right now.

But I do want you guys to read this and realize that invisible illnesses are just as real as others. If you’re a sufferer of one, read this and know you aren’t alone. If you don’t have an invisible illness, just read it and try to understand what it’s like to have one. Invisible illnesses seem impossible to understand, until you’re diagnosed with one… and I hope you never are.

Everything happens for a reason.

Even if we can’t understand the reasoning.

Remember that, and hold onto it.
That’s what really gets me through the bad days.

Thanks for reading.

Xoxo,

The Reality of Taking a Leave (from Uni)

This post is going to be a bit more personal than many of my others. I’ve had a lot on my mind recently and I made this blog with the intention to be 100% open with you all and 100% invested in its success. So here I am, sharing my current reality.
The following is my experience.

If you’ve read my post Living with Tachycardia 101, then you know that I’m currently taking a short break from my studies to deal with some medical problems.

This post is directed to those of you in similar situations, thinking of leaving or having left due to medical illness.

It took me almost a month to make the decision to leave college for a semester, and I still feel uneasy thinking about it. It feels unnatural, being home while my friends are studying and being independent from their parents.

You might lose a great deal of independence.

My independence was a big deal to me. Before I began dealing with tachycardia and the other various symptoms that have popped-up along the way, I was as independent as I could be. I bought my own groceries. I paid for school by myself as much as I could. I set my own schedules at work and school. I didn’t depend on my parents for dinner, a ride anywhere, etc. That changes when you leave, especially when you’re sick.

I came home feeling dependent on my parents. Dependent on their approval especially.

Was I making the right decision? Were they disappointed in me?

It took me a few weeks to realize that I had to do what I thought was best for myself, regardless of the opinions of anyone else.

You could spend a lot of time alone.

If you’re taking a leave of absence for medical reasons, like I am, and you can’t work right away, you’re probably going to be alone the majority of the day every day. My younger brother goes to high school, works sometimes after school, and also has extra curriculars. Both of my parents work during the day. So, I’m left at home by myself at least five days out of the week. At first this seems like an advantage. I know I was excited to be able to rest and relax alone with Netflix and no major responsibilities. But it becomes lonely after a few weeks, and you begin to get tired of being alone.

I keep thinking to myself:

If I were at school, I could call a friend to watch a movie with me.

I could talk to someone face-to-face. 

You’ll probably lose a lot of your support system.

I don’t want to say that you’re losing them because they’re technically still there, but you aren’t. The majority of my support system was composed of college friends, professors, and in some instances even employers. Making the decision to come home, I also had to grapple with the fact that I was leaving all of them behind. The reality is I can’t just pick up a phone and ask my best friend to come over, because she’s miles away in a classroom. I can’t just ask a friend to stay the night because they aren’t a few doors down from me anymore. It’s challenging. I know that they’re still there, but they aren’t within a reachable distance and that makes it so much harder to feel supported. I can’t hug my friends when I’ve had a bad day, because they simply aren’t there.

Don’t get me wrong, my family is a huge part of my support system. But it’s different. It’s so completely different. There’s nothing like watching an old movie with a good friend, being held by them while you cry, or getting milkshakes at midnight because you both feel like your life is in shambles.

You’ll feel like you’re missing out on a lot.

When you leave college behind you also leave behind the culture. I can’t go to the functions on campus because I’m not there. I can’t struggle through midterms with my friends because I’m not taking any. I don’t know any of the happenings on campus and can’t hear any of the new gossip because I no longer work in Student Life. You just feel so out of the loop.

You could struggle with anxiety and/or depression.

This has been a big one for me. Being alone the majority of the time, I’m left with my thoughts. And sometimes that isn’t a good thing.

What the hell is happening to my body? Why am I sick like this? Why is this happening all of a sudden? Will they ever find an answer? Will I have to live like this for the rest of my life?

A lot of the time no one seems to be as concerned as you are, which makes you wonder:

Am I blowing this out of proportion?  

Which leads to:

Did I make the right decision to leave school? 

It’s a downward spiral that leads to intense anxiety. There’s so many what-ifs when you have an undiagnosed illness.

On the other hand, you’ve isolated yourself either in an attempt to manage the anxiety that you’re experiencing, or because, like me, you don’t have access to the public during the day. Isolation leads to depression. You start thinking things like:

Maybe I did something to deserve to feel this way. My friends and family probably feel like I’m a burden. I’m too dependent on my loved ones. Maybe my boyfriend will leave me because I’m so needy. Maybe my friends will stop talking to me because I don’t have school in-common with them. Maybe I should just give up completely. 

You’ll have good days too, even great ones. 

Just yesterday I was in Charlotte, North Carolina enjoying pizza with Jon, thinking to myself how lucky I was to be sitting across the booth from someone so understanding, encouraging, and full of life. That morning we drove almost an hour to the mall to buy lavender-chamomile soap from a store with only one location in the Charlotte area. He didn’t act like it was a chore, and he distracted me from thinking about how I felt. When I started to get anxious about how fast my heart was beating, how dizzy I felt, etc. I just hooked my arm into his and let it come, knowing that if I should fall he would catch me. We got milkshakes at one of our favorite ice cream shops and drove through downtown just so I could look at the big buildings and interesting people.

Your family will always be there for you. 

This morning I called my grandmother because I was beginning to feel discouraged and anxious about how dizzy I’ve been the past few days, and was met with:

You’ve been doing so much better and you’re going to do even better. 

My mother has been my rock through this entire ordeal. When I first decided to come home, she didn’t approve, and sometimes it still seems like she doesn’t, but regardless she’s there for me. She has been to every doctor’s appointment with me, and has been my advocate 99.9%. She looked my cardiologist in the face and said:

As women our symptoms are often brushed off as anxiety. Don’t do that to her. I want you to leave no stone unturned. 

You’ll be just fine.

I’m not there yet, and if you’re reading this you probably aren’t either. But, I’m getting there one day at a time. Someone the other day told me that I was getting better, and I met that with the response:

I’m managing it better. 

And honestly, that’s all that matters.

Take it day by day.

Listen to your body.

Breathe and know that you aren’t alone.

You’ll be just fine. 

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