Life with FND

In honor of Functional Neurological Disorder Awareness week, https://fndhope.org/ has asked those who live with this disorder to share their experience, and what their life is like with FND. Last year, I shared my FND story and how it all came to be, you can check that post out through the link at the bottom of this blog post.

This year, I am going to share what it is like to live with FND. Just to recap, FND is a problem with the functioning of the nervous system, causing the brain to send incorrect signals to the body. FND is as debilitating as other movement disorder conditions, such as Parkinson’s, stroke, and Epilepsy. For me, it happens in cycles throughout the night, and presents itself as non-epileptic seizures on the left side of my body. They will occur during the day if I am stressed, sick, eat gluten/dairy, have not exercised for the day, or have any added physical stress to my body (sunburn, digestion issues, sore muscles, hormone fluctuations). I have had this condition for ten years, but was misdiagnosed for eight of them.

I want to share my story to spread awareness because this can apply to people with FND, but also those with other conditions that are afraid or embarrassed to speak out. While I can work out, go to class, and live my life just like everyone else can; having FND adds other dimensions to my life that others don’t have to worry about. This post is not meant to focus on what FND has taken from me, because there are just as many positive aspects FND has contributed to my life as there are negative.

1. FND moves me

Having a condition that moves my limbs for me is just plain annoying! It makes everyday things hard to do, but the biggest one for me: sleeping. There’s no way to describe the helpless feeling I have when it keeps me frozen in a certain twisted position during the night, or in public, not knowing when it’s going to let me go. I refer to it as an “it” because even though it’s my body doing this to me, it feels like something else moving me. Spells are not a feeling I can replicate voluntarily, it is like a whole other force. When people ask me to show them what it looks like, it’s like trying to make a horse into a unicorn, it may look somewhat close, but it isn’t a real representation. The best way I can explain it is to imagine flexing a straight arm and leg, but multiply that muscle tension by about ten. Then, twist your arm and leg into unnatural positions, add some shock feelings in your brain, and hold it still like that until it releases from the death grip just to jerk your arm until it feels like it has ripped your rotator cuff. I’ve learned that most can’t fathom losing control of half their body, and this is because they think I’m moving my own limbs when I have a spell in front of them, or tell me to “just stop doing that.” As frustrating as it is for people to think I am doing this to myself, I can’t expect them to understand because our bodies were made to work in harmony. Many ask if spells scare me, and my answer is only during a “flare up.” My flare ups happen when I am sick, overly tired, don’t work out, or have any added physical stress. I have gotten used to the feeling of the everyday mild spells during the night, they have become my norm. But when I have a flare up; any sudden movement, bump in the car, loud noise, flashing light, poke, or startle will set it off, prohibiting me from being able to walk on my own, and will pull me to the ground no matter what time of day it is or where I am. It is terrifying times like these that have made my birthday cake wish every year since fifth grade to be a cure for FND.

2. FND makes me responsible

My FND keeps me on a consistent schedule of exercising, eating right, scheduling appointments, managing stress (trying to), and getting to bed at a decent time. Because of this, it has made me more responsible, makes me more efficient, spend time wisely, and makes me consider my actions a lot more. I’ve learned to gauge what I do in order to not exhaust myself, and that some situations aren’t good for me, or anyone for that matter, to be in. Is staying up an hour later to watch Shark Tank worth having a worse night? I know I will thank myself if I just go to bed (but I don’t, I haven’t fully grown up in that sense). Is procrastinating this homework in order to catch up on sleep from deciding to watch Shark Tank the night before going to reduce my stress levels? That one is always a toss up. Will skipping this workout since I was up all night with spells benefit me? Skipping makes it worse, so I don’t miss a day no matter how tired. Is this cookie full of gluten and dairy that takes me ten seconds to eat worth hours of spells tonight? Sadly, no. Is going to girl’s night out and staying up late worth a flare up? Absolutely! Gotta have a little fun. I have gotten good at choosing which battles are worth fighting, and because of this, I sometimes forget I’m not actually 25-30 since I weigh out the costs versus benefits more than the average 20 year old. College shenanigans like drinking or other unhealthy bonehead moves aren’t worth the effects that follow, which is why I don’t, won’t, and haven’t (I may act 21+, but I’m still 20, duh), participated. I’m glad that I am responsible in that sense, because walking up The Hill coming back from a sub par house party in the middle of winter at midnight without a coat because girls are “too cool” to carry them is not my ideal night. Wise beyond my years, and no record of hangovers, has never felt better, and for that, I thank FND.

3. FND is a leash

Because I have to consider the reaction that comes from every action, I have to turn down activities or events that I want to be a part of, but know will harm me more than help me. I’d love to go on a two AM Perkins pancake run with my sorority sisters, or a midnight movie showing, but I know it will screw up my sleep schedule and make me miserable the next couple days. There have been morning study sessions or breakfasts that I missed because of morning neurologist appointments, or have to get my workout in so I don’t flare up during the day. (Working out at night is not as effective as morning workouts). There are days when my energy is so low from being up the night before with my spells, that I simply can’t go out with friends that night, or do anything at all because pushing myself to do more than I should will make the vicious cycle worse. It is a vicious cycle of having a disorder that makes me tired, but is caused by being tired. FND is a leash in the sense where I can only venture out so far and explore a limited amount before having to stop. It gets frustrating having to consider every decision I make, or invitation I get, when all my friends can just say yes or no in that moment without thinking about how it could affect them in the following days. FND is also a leash in the way that it instilled a fear in me that if I do something outside of my routine, something bad will happen to me-like a shock collar. The fear keeps me from being able to venture out past my routine that more serves as a boundary. I have been trying to make the leash longer (like one of those retractable ones) by allowing myself to do more fun college things with friends, but it definitely takes patience trying to break something I have practiced for ten years. Lastly, I’ve been hooked up to many wires…can’t go very far when you are hooked up am I right?

4. FND reveals my support system

I am grateful for FND because it shows me who I can depend on. Psychology shows that we have negative implicit biases no matter how hard we try not to, that’s why there is stigma against abnormal in the first place. I have found it interesting how “normal” I am treated everyday because my FND can’t be seen, but once I have a spell in front of those same people, they treat me differently. I don’t want those people as my friends, so FND is a blessing in disguise because it reveals people’s true colors. Growing up, I have been called inappropriate names, mocked, excluded, pointed at, and even have been singled out during a college psych class for being “mentally handicapped” during a unit on people with psychopathic mental disorders that ended up in jail. As much as those comments and actions hurt in the moment, it wasn’t due to the cruelty of it, but more the frustration that they didn’t understand my brain is structured perfectly normal, just like theirs, and FND doesn’t change the way I think or act at all. I’ve come to realize that people don’t necessarily dislike those who are “different,” but rather, are scared of what is uncommon, and attacking them is easier to do than trying to learn what is actually going on. You know when you’re in a public bathroom and someone knocks to see if someone is in there? Yet every time, you are frozen and don’t ever know what to say without making it more awkward? This is how people react when they find out I have a disorder; hesitant, embarrassed, and temporary lack vocabulary. I’ve found that people feel more comfortable when I am comfortable with my disorder. It’s like when someone hurts themself, and you’re allowed to laugh once they laugh, because that means everything is ok. While my FND may look like I’m not ok, I truly am perfectly ok, and perfectly myself. It’s a very anti-climactic disorder because people envision non- epileptic seizures to change my personality and current state, but the only thing that changes is the fact that my left side is now moving on its own. Most don’t know it’s happening until I point it out because I’ve made times where it’s pulling me to the ground look like I’m picking up something I dropped, or “casually” leaning against a wall when it isn’t allowing me to stand on my own. My best friends to this day are the ones that have stuck with me through it all, didn’t exclude me from their games at recess (5th graders can be nasty), and are comfortable around me when having spells. It has also shown me how much I can depend on my parents from the effort put in trying to learn more. Having my support system is so beneficial because it is great to know that they see me as the same person I was before I was diagnosed with FND, aka the same.

5. FND keeps me paranoid

It’s frustrating having a disorder that doesn’t let me relax, both literally and figuratively. In the literal sense, when I sit or lie down too long, and no muscles are engaged on my left side, my brain thinks it has lost that half, which causes the random firings to make sure they are still there. The brain is often times compared to a computer, and this goes to show that even the smartest “computer” in the world can have glitches (just like smart phones aren’t all that smart, I’m looking at you, Siri). In the figurative sense, FND never leaves the back of my mind no matter how hard I try. People tell me to “just forget about it,” but that is like telling you to stop thinking about an assignment you have due. FND is like a never ending assignment without a due date. Since I was diagnosed, I remain paranoid that it will happen at times I don’t want it to. I can be out with friends, family, or on vacation, but can’t fully enjoy it like I should because there’s the thought my FND could show up to the party as the funky uncle that no one invited. I’m not saying it keeps me from having a good time and consumes my thoughts 24/7, but it would be nice to have a movie night with the girls, not having a single thought about sitting too long, or the possibility that I may have a spell. The biggest one for me, is that I never feel like I can fully relax at night because my spells happen once I fall asleep (this includes naps). Most people look forward to going to bed at night, but I dread it because I never know what the night has in store for me. I actually enjoy when my alarm goes off in the morning because that means I can finally be done sleeping, and can go work out to make it all stop. I can’t wait for the day I can wake up in the morning feeling like I didn’t just do a full workout on half of my body, paint a canvas at a sorority event without planning an escape route if I have a spell during it, or go to bed without being scared.

6. FND makes me strong

FND has made me strong in every way possible; solid in my values, mentally strong, spiritually strong and even physically strong as my left side is stronger than my right from years of spells. I have always told myself that while FND controls me physically, I don’t let it control me in any other way. I don’t ever want to be defined by my disorder or let it consume me. In order to do this, I have had to stay strong in some tough situations like scary procedures, terrible medications, being pulled underwater during a spell, long nights, and frustrating moments when it would have been easier to let them break me. I’m fully aware that I am not living the life of a typical college kid; as I explained in last year’s post, FND has caused me to have to live without a roommate, be on some wonky medications, depend on my parents more than the average 20 year old, and drive back and forth many times for doctors appointments. It has been hard to stay positive at times, but I have gained strength by giving my fears and hardships to God, and that is what motivates me to keep going. I look back at all I have gone through since fifth grade, and realize that all the times I felt I was struggling to stay above water, I actually was doggy paddling like a pro. I couldn’t have done it if I didn’t become stronger in all areas, and used God as my crutch. Many of you know that Philippians 4:13 “I can do all things through Christ who strengthens me” is THE verse I live by. I internalized these words, and have seen how they have applied to my life by overcoming obstacles with the strength I have gained. FND has taught me how to dig deep for courage when I need it, and that I can do so much more than I ever thought I could.

7. FND is not relatable

FND is not well known, which makes it hard to explain to people in a way they will grasp it. Explaining what I feel is like trying to think of a word or name, and it is on the tip of your tongue, but you just can’t pinpoint it. I can explain it in the best way I can, and people understand the concept, but there is no way for them to experience or know what FND feels like. I wish there were some type of simulator so people could feel it like I do. It is frustrating having something out of the ordinary because I want to be able to talk about it with others when it is giving me a hard time, especially my parents. While they know me better than anyone else, FND will always be the one thing they truly don’t understand about me no matter how hard they try. Humans are great at bonding over tough times. We’ve all been there; getting stuck in a downpour halfway across campus, washing the dishes and touching a soggy piece of bread in the sink, stubbing your toe, the whole class bombing a test and joking about it together because it wasn’t just you, and my personal favorite; seeing my sorority sisters complain together over how sore they are from a sisterhood”Lauren workout.” It helps to talk about experiences we have all shared at some point, and eases stress knowing you aren’t alone. But with FND, it is hard to do because while people try to relate to me by saying their arm twitched randomly one time at night, or flop their arm around “pretending” to be like me, it just isn’t the same, and actually makes me very upset inside. In addition, FND looks different for those who have it. I am a part of an international FND group, and through this, people share their experiences, tips, and give/get support. While it’s nice to be in this group, I still haven’t encountered someone else who also has FND on only one side of their body, and only while sleeping. Tactics that help ease my symptoms don’t help others, and tactics others have found to help, don’t help me. Even those with FND can’t entirely relate to each other, and because of that, it feels like I am stranded on my own little FND island. It would be nice to have some visitors every once in a while.

8. FND gets me involved

So many people in the U.S. suffer from FND and they don’t even know it. Being someone who has had this since I was ten, but not knowing I had it until I was 18, I don’t want others to endure what I have if they don’t have to. While I made it my mission to stay strong, and stay myself through my journey, not all those with FND have been able to. In the FND group, I see countless negative posts about how down and hopeless they are feeling. These posts hurt to read, and while I personally understand how it is easier to adopt a negative mindset because FND does truly impact quality of life, I want to be proof for those people that it doesn’t have to be like that. You become what you believe, and I am LMC, not FND. While FND is not psychological, it definitely helps to maintain a positive headspace, and is a lot healthier. I have tested many theories like cutting gluten, dairy, soy, and egg out of my diet, not eating past a certain time, sleeping with sandpaper, rubbing ice on myself, brain exercises called BBQ rolls (not as yummy as they sound), sleeping sitting up, medication made for Parkinson’s, taking so many supplements to the point where I bought out all the pill boxes at Walgreens, weighted blankets, consuming “seratonin smoothies”, bananas and peanut butter at three AM, anti seizure meds, lasers, and some things that have come close to stripping my dignity away. But even then, all of that is worth just one improvement. I enjoy sharing my findings with the FND community because anything that helps take away a symptom is worth a shot! Knowing that I may have helped to ease someone’s spells is what motivates me to keep going through these weird treatments. My spells are mild compared to others who have it full-body and are wheelchair bound. I spread awareness for those people who have it worse than me because I’m grateful to live an active life and be able to be a voice. I’m passionate about spreading FND awareness because I believe that there can be a cure, it just hasn’t been studied much before. Ever since I have started to share my story, I feel like I can be myself, because I know that the more people know about FND, the less I have to hide it. Everyone deserves to feel comfortable with themselves, and this is why I spread awareness for those who struggle with anything “out of the ordinary.”

9. FND is daunting

Anyone that knows me, knows I’m future-oriented. I plan out my days, weeks, months, and even have a rough outline for my next ten years on Pinterest. FND doesn’t fit into any of my plans, and can’t be scheduled into my Google Calendar, because it has no forecast telling me that Tuesday will be partly cloudy with a chance of midday FND. There are days where I feel great, and don’t think about my disorder at all. But then there are the days where it occurs to me that there is no cure, and I’m stuck like this for who knows how long. It’s so easy to get down on those days, and let daunting thoughts enter my mind. What if I’m stuck in my rigid routine for the rest of my life; not being able to travel much, always being paranoid, having to work out every morning, not sleeping, etc? What if it affects my future in the workplace? I can’t just skip work if I am having a flare up like I can with college classes. And the biggest one for me, what if it spreads to the rest of my body? My FND started in my arm, but as time went on, it spread to my leg, and then my neck. Having it spread to my right side, or begin to happen during the day, would make me have to learn how to live my life in a new way all over again. As dramatic as that sounds, it is something I have to consider because everything about FND is unexplored territory; there is no way to predict what it will be like in the future because there is no way to study it yet. While I have been able to adapt to life changes so far, changes continue to increase their magnitude as I am getting older. For a disorder that hates when things change, this could be a problem! Trying to imagine what my next year, even month, will be like is like trying to see the other end of the ocean- impossible. As much as I like to plan, I get ahead of myself, which is why I try to adopt the “one day at a time” idea. For now, I just tell myself I’ll deal with it when I get there, and believe in God’s plan for me.

10. FND makes me confident

Having FND has, and continues, to teach me to be comfortable with who I am. It helps me to see myself how God sees me; fearfully and wonderfully made. Having a condition that forces me to be in touch with myself, and has been an actual problem in my life, has revealed that there are bigger problems than getting beat in a round of middle school Lightning, my position in the social hierarchy of high school, or getting turned down from one internship. I wish I knew back then that I should have been putting my effort into accepting myself instead of dwelling on negatives because my last couple years could have been a lot happier if I did. If I had not learned to laugh at some of the ridiculous adventures this disorder has taken me on, I wouldn’t be who I am to this day. I would be insecure, embarrassed, and live in a protective shell. I mean really, it is kind of funny to think back on the times I keeled over out of a chair, cartwheeled down hallways, had to be hooked up to a ceiling belt in order to use the bathroom in the epilepsy unit as protocol, made my parents leave a movie to help me walk during a spell later finding out they were glad to leave because it was terrible, scared my dog away, or got a spell to stop 30 seconds before I had to have full control of my limbs in order to compete flips on a four inch beam in front of hundreds of people. While it is still hard to feel comfortable with the disorder happening in the moment (seeing a dad help his 20 year old daughter walk without falling leads to stares), it has made me comfortable with all other aspects in my life. I feel no need to fit in or follow other’s leads. I am so solid in my values, who I am, and what I do, that I am unshakeable, and I love it. I am perfectly fine being a sweaty tomato at the gym, going to class without makeup, having toilet paper stuck to my shoe, violating social norms for class, and dancing down the aisles of Target with my sisters when none of them would dare to, because all of that doesn’t even compare to the embarrassment I’ve felt from my FND in the past. I will admit, I used to be concerned with how others thought of me because I thought of FND as extra “baggage,” so I thought I had to be perfect in every other way to compensate for my disorder in order to be accepted. I have now learned there is no need to do that because there is nothing wrong with following a routine, being solid in my beliefs, my faith, or doing things differently than others. Being confident in myself has made me confident in my abilities, the future I’m making for myself, and truly embraces the “I can do all things” mantra I live by. There is no better feeling than knowing who you are, what you are passionate about, and putting your whole heart and effort into it with no distractions or doubts that you will be shaken.

FND has taught me so many things about a wide range of topics like neuroscience, psychology, gastrointestinal functions, nutrition, movement, relaxation, how annoying soy is,…but the biggest thing, is that even the most terrible things can have silver linings. It has taught me to find the good in every situation, even if it took me ten years to find this one. The other day I was asked in class what one thing I would change about myself, and my FND didn’t come to mind. While there are some parts of my life I would go back and change, like flashing the custodian due to a faulty shower rod, I wouldn’t go back and change the fact that I was diagnosed with FND, because it made me into the woman that I have wanted to be since I was a little girl; strong, grateful, confident, successful, and a leader.

Thank you to all my friends and family who made it through another novel of my story, and continue to be my biggest cheerleaders-it doesn’t go unappreciated. I hope this post has helped to make you all more #FNDAware. Feel free to ask any lingering questions, or check out last year’s blog post below!

~Lauren

https://lcasey47.wixsite.com/lifeoflauren/single-post/2018/03/29/My-FND-Story?fbclid=IwAR31fw8Sdkt-fhdgxynbqAggdyWxYAmCNAcMuYeIu0QcQNrry7sFdsnATJ4

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