In preparation of Functional Neurological Disorder (FND) Awareness Day April 13, http://fndhope.org asks those who live with this disorder to share their stories to create awareness for a condition that very little know about- including the best doctors. While I have had FND for 13 years now, this is my fifth year sharing my story, and I will always be a voice for others with FND that choose to keep it hidden out of fear. When I tell others for the first time that I have a disorder that causes non-epileptic seizures, their minds tend to jump to the conclusion that living with it is unbearable, and I am limited. While some days definitely feel like their conclusions aren’t that far off, a majority of the days aren’t like that, and sometimes I forget that I have the issue of losing control of half my body. An average day with FND (for me at least), is a lot more anti-climactic than you’d think. Of course, I have had 13 years to adjust to the way I manage things, and some habits I do seem completely normal to me now that may seem odd to those without FND. But even then, I can still physically and mentally do everything that everyone else can, it is my reasoning and motives for why I do what I do that makes my average day different than yours. Some people don’t understand that I get to the same destination as them, but use a different route to get there.
Countless numbers of people over the years have politely tried to ask me about living with FND. I can always feel their desire to grill me with even more questions, but hesitate like they’re asking me about how my last OBGYN appointment went. I’ve realized that it can be just as hard for people to ask me about it, as it is for me to bring it up or ask for compromises. To this day, I still struggle voicing how I need to do things a little differently because it is the most vulnerable part of me. I’d honestly have an easier time strolling downtown in my underwear than talking about it because of all the ended relationships, discrimination, and adversity it has caused me in the process of trying to explain it, what an attempt to treat it looks like, or people seeing it. Not talking about it, and no one asking me intentional questions has left a huge gap in understanding; something I have always strived to have from others. The purpose of this post is to finally answer: what is a day like with FND? And in doing this, I hope to create more awareness, comfort, and understanding, so I wouldn’t prefer strutting my stuff in my skivvies over talking about what I need in order to thrive! (Stay tuned for an announcement at the end)!
Before I dive in, let me rewind a bit for those who are new or need a quick refresher of my story. FND is a problem with the nervous system that causes my brain to send incorrect signals to my body. To put it in IT consultant terms: the hardware of my brain is A-Okay, but it’s a software issue. FND presents itself differently from person to person, but for me, it causes non-epileptic (no abnormal or damaging brain activity) seizures on only the left side of my body, and primarily when I sleep at night. BUT, “spells,” as I call them; will happen during the day if I get sick, am overly stressed, don’t exercise everyday, sit too long, travel, or eat too much dairy (no biggie, right?). While it is a non-epileptic seizure, I remain fully conscious 95% of the time (the other 5% is new and hopefully not here to stay). It’s hard for people to wrap their heads around the fact that nothing about me changes during a spell. My witty sarcasm remains fully intact, I can still hold full on conversations about the Bachelor, do all my work, and I am not the “R” word as I have been called before.
It all started by contracting a weird rash when I was 6 and not knowing it was Lyme Disease. The Lyme seeped into my nervous system 4 years after the initial Lyme exposure, and my first spell occurred when I was in fifth grade. It wasn’t until 16 years later I would find out I have had Lyme all this time…whoops. Before discovering Lyme, we were never able to find answers as to where FND stemmed, but then, I went to a wedding that got moved to an Alpaca Farm because of Covid, and the Lyme “woke up” after something must have bit me on the farm which caused a red circle to appear on my arm, and I got very sick for a month (of course this all happened my first week of work EVER). That is when my current functional medicine doctor proposed the theory of having Lyme all these years, and was correct, which in turn finally gave me the answer of where FND started. There is no known cause as to why the nervous system and brain stopped communicating correctly when triggered by the Lyme, and because of that, there is currently no cure for FND. I can vividly remember what my first spell was like, including how I didn’t know how to tell my teacher I lost control of my arm, so I just didn’t say anything at all. I remember every detail from that day down to what I had for breakfast, what I was wearing, eating my Spongebob edition cheez-its after school, & telling the paramedics that I didn’t want to ride on the stretcher because it’s embarrassing so I walked to the ambulance at the doctors office. I remember all this because that is the day I had to start living differently than all my friends and family. It is confusing for those to understand that my Lyme is being treated, but that doesn’t mean FND follows suit, and I don’t know if or when it will ever go away- but I always have hope that it could. So with that, let’s look at at a typical, average week day for me with FND, shall we?
- Wake up! Most people have to use alarm clocks to get up for the day, but in an oddly helpful way, my FND is a built in alarm clock that wakes me up at 6 everyday for work, or whenever I know I need to get up the next morning. If I tell myself that I need to get up at 8 the next morning, my subconscious must remember that and my FND will wake me up with a mild spell at that time. I have absolutely no clue how it works, but as a neuro and psych geek, it is fascinating. I also have different “types” of spells. Each kind is like my body communicating what I need in morse code as weird as that sounds. My “wake up” spells usually are short and mild, while my spells while I sleep are violent. My “during the day” spells feel different than the “at night” spells. I can tell when it’s an “I haven’t worked out today” spell versus a “I am sick” spell. Like I said, oddly helpful.
2. Daily dose! The next key component of my morning is making sure I take my daily dose of…….coffee (did you think I was going to say medication? For the record, there is no FND medication). Just like almost everyone else on this planet, I start my morning with coffee, not some voodoo method or practice like I have had some people tell me that’s what they thought I did with my mornings to manage FND. But also, FND will flare up if I get too tired during the day, so coffee helps me in that aspect. Two birds with one stone! Coffee is the beginning of my morning routine that I love to wake up to.
3. Me time! Next, I find “my spot” on the couch and have my me time which consists of reading a daily devotional, journaling in my gratitude and goals journal but ultimately ending up on Instagram in the process, and having my daily greek yogurt even though I am supposed to be dairy free (this is one love that I refuse to abandon). This time in the morning is very important to me not only because it is a form of stress relief for me which is important to keep my FND in check, but also, it grounds me and gives my brain consistency and routine. Starting off my day with a constant makes me feel safe and relaxed- two very important things when it comes to the nervous system to prevent “fight or flight” mode which my body is stuck in most of the time. A lot of the things I do for FND, I would do even if I didn’t have this disorder because quite frankly, I think everyone needs some solitude everyday for their own health!
4. Work! Next, I start my day job as an IT Project Management Consultant! Currently, I am a HR generalist consultant for HomeServices of America Corporate, and I love the work I do, and my team! Having a team that is accepting and understanding is obviously something we all strive for, but for me, it means more than they even know. When it comes to work, this is the aspect of daily life where having FND can create more obstacles than someone without it. Staring at a screen too long, and sitting too long, are both things that can trigger a spell (good thing I work in IT, huh?). Because of this, I have to be very conscious of how long I have been sitting, and use my lunch breaks to get my movement in at the office. I have a favorite walk route through the skyways that is a mile long round trip to Cardigan Donuts just to look in the window and soak up the glorious smell before I go back to my cube. I have had spells at work before simply because I got too caught up in my inbox and didn’t realize I had been sitting too long for FND’s liking.
This is something a majority of people don’t have to worry or think about, which can make it hard for me sometimes when others don’t view life/work through my lens. My FND does not affect my performance because nothing about the way I think or process information is touched by FND. Unfortunately, I have dealt with coworkers and bosses that thought otherwise once finding out about it or seeing it. The thing with invisible conditions, is that I don’t necessarily need accommodations at work, I just need understanding that there are periods of time where it may be worse and I need to stick to a schedule that works for me to manage it. This is where the new normal of working from home has been such a blessing. I can get up in between meetings and go on my elliptical, do handstands, and other things that would be very strange to do at the office when I feel a spell coming on. When it comes to PTO and sick days, life without working from home would put me in a pickle. FND will flare up with even the common cold, so life would be so much harder if I had to choose between having spells at the office every day for a week or so, or using a ton of sick days. Luckily, I don’t have to make that choice since Covid struck the work world.
5. Gym! After work, I hit the gym similarly to how I used to have school, then a 4 hour gymnastics practice every day. Exercise has always been in my life, so having this routine since 3rd grade really carved a pattern into my brain and nervous system. Exercise is my outlet for pretty much every emotion. Going to the gym isn’t an “out of the ordinary” thing. Like I said, my life physically looks a lot like everyone else’s…but it is the motive and reason for why I do things that makes my average day different. Everyone exercises for different reasons; stress relief, enjoyment, strength training, weight management,…but I bet you, the one reason they don’t exercise is to prevent losing control of half their body. Again, I exercise for all the reasons above, but having FND tacks on more figurative weight to my workouts, and if I skip a workout, I suffer more than having pangs of guilt that I didn’t run on the hamster wheel for a half hour. If I don’t get my workout in, spells will happen during the day rather than just at night. This means that I have to strategically plan out my days as to when I will get a workout in at some point, even if I am out of town or sick, otherwise I have to accept the fact that I am probably going to flare up in places I probably would prefer not to (flashback to the mall in Kentucky outside of the Cheesecake Factory). While exercise is a great routine to have, having it be a contingency to prevent something from happening, and having to do it for a certain amount of time in order to prevent said something (I have to get in at least 1 hour of cardio to prevent spells), can be very annoying at times…especially on days I am sick or literally can’t!
6. Shower! There is no difference in how or why I take a shower when it comes to FND, I just thought I’d let you all know that I do in fact shower everyday after a workout like a “normal person.” If you don’t relate to me on this one, you might be the “not normal” one here.
7. Dinner! I love to go out to dinner with friends, family, and have Fry-day Friday date nights with Zach, and to be honest, FND doesn’t slow me down here at all for the most part. Sharing a meal with someone is something that brings me joy and peace, even when I have my nights alone in my apartment and whip up some gourmet frozen entrees from Trader Joe’s. That being said, I still need to be cautious of the foods I am eating, and make sure I nourish my body properly and get enough protein and calories. The nervous system and brain are sensitive to certain inflammatory foods such as dairy, gluten, sugar, alcohol, and anything fried…or basically anything fun. The connection between the gut and the brain is so strong, and that has been a big struggle for me the last few years with healing my gut health in order to help my brain. I used to try to follow this “FND diet” so strictly, but soon realized that trying to live life without my favorite oatmeal raisin cookies (don’t judge me) or greek yogurt was causing more issues mentally and emotionally and not worth it. Even though I don’t quite follow it like I should still, that doesn’t mean I don’t follow it at all. I just have to choose my battles. Dairy is the #1 killer for me and I try to avoid it as much as I can (especially on days I can’t workout, am sick, or on vacation) without making everyone else’s lives harder for trying to accommodate for me. As I mentioned before, I struggle to voice what I need sometimes so I don’t feel like I am high maintenance because I hate the feeling of others needing to accommodate for me, especially when I get the “what kind of symptoms do you get when you eat that?” question and have to tell them I lose control of half my body when I go to sleep that night more than usual if I eat a piece of cheese. For the record, I usually just get an “oh” followed by nervously awkward laughter after that.
Life with FND for me is not as hard as you’d think- my daytime is pretty standard and no one even knew I had FND until I told my story 5 years ago because it’t not that hard for me to hide. But as the clock starts to get closer to bed time, that is when it starts to get tough for me, yet it can’t be seen, only voiced. Most people use the time in between dinner and bed to relax and take a load off, but for me, it is the complete opposite in a mental and emotional sense. As I mentioned in the beginning, my spells are nocturnal and come alive at night while I sleep. At night, they are violent rather than mild. As stoic as I like to try to be, I am fully admitting that I am scared to go to bed most nights especially now that my spells have passed the unconscious threshold a few times and I live alone. Other than fish (long story), sleeping is one of my biggest fears because I never know what each night is going to bring me. People tell me “stay positive” or “don’t expect that it will happen.” The thing is, I never have really had a glass half empty type of mindset with FND even though I am more of a realist. I don’t go to bed with the expectation that it’s going to happen, and I like to give my brain the benefit of the doubt even after the now literally thousands of times it has proven me wrong. It’s so hard to enjoy watching a movie or reading a book when all I can feel is fear bubbling up inside me that I don’t know what the night holds, or if I am going to go unconscious tonight. While no one really knows what my spells look like since they do primarily happen while I sleep, I am glad no one knows; not only because it is still embarrassing whenever I do have one in front of someone after all these years, but also because that would mean y’all would have to be cozied up in bed next to me which would be downright weird!
Sleeping is truly a chore for me. I do not enjoy it most days because it feels more like a half body workout than floating on cloud 9. Oddly enough, spells only happen to me when I sleep at night. If I take a nap, I am untouched. Sleeping is the biggest difference when it comes to living with FND (for me), and I guess it does affect me in a physical sense here because I legitimately am not good at sleeping which just makes it a nasty cycle of being tired, which makes it worse. It is so hard to explain to others what happens to me during the night, and for them to fathom that I lose control of half my body every 30-60 minutes all night long, and then am perfectly fine when I wake up like nothing even happened and go about my day with no one knowing. I can, and always have, been able to sense when a spell is about to happen. A spell itself starts out as my whole left side becoming stiff (imagine flexing all muscles x10), and twisting into uncomfortable positions, staying stuck like that for a few seconds, then my body releases and it turns into violent jerking until it stops for a brief moment before it starts that cycle all over again. No matter what I tell my brain and body to do, it will not listen. People always ask me if spells hurt. No, I don’t feel pain, but rather, extreme strain (but it does hurt when it makes me involuntarily kick tables or fall into counters). The anticipation and fear of knowing what I am about to endure is the worst part. While this sounds not very delightful, I’m actually fortunate that my FND occurs at night and only on half my body (no doctor has ever seen it present like mine does). Most folks with FND have this happen to them during the day, and full body, to the point where it can’t be hidden and truly does disrupt their lives. FND has taught me to find silver linings in everything…and that I can nap pretty much anywhere.
Well, there you have it. While I have had some extremes happen over the last 13 years, again, that isn’t a typical day for me. My FND thrives when I stick with my routine which makes sense because anything that is outside of my routine makes my nervous system more nervous…but I am working on training my nervous system to chill out if I don’t keep routine so I can live a little more. If anything, FND ironically keeps me healthy! It makes sure I get enough sleep, eat well, limit alcohol, have a solid morning routine, take time to move during the work day, not have too much screen time, and exercise- isn’t this what we all should be doing? If everyone did this, I probably wouldn’t be making this post (except for the sleeping is hard part). The reason my favorite verse is “I can do all things through Christ who strengthens me.”- Philippians 4:13 is because I truly believe that I can do all things despite what I have gone through, currently go through, and have the potential to go through. Looking back, I can’t help but be proud of the fact that while I could have been defeated by FND like a lot of FND patients choose to be, instead, I decided to continue to reach my goal of being a college gymnast, was an all honors student, never did or have included it as part of my identity, created my blog to promote awareness as well as continue my passion for writing, and used it to fuel my love for psychology. I basically declared my college major ever since my initial spell in 5th grade (my reasoning was I thought I could graduate, find a cure for myself, write an autobiography about it, then end up on Ellen DeGeneres). While FND may control me physically, I will never let it control my ability reach my goals, succeed in what I set out to do, or diminish my hope. FND has been a blessing in disguise for a lot of reasons – it’s the reason I discovered my Lyme Disease after 16 years – and I will continue to see it as a blessing in disguise, and a tool that God gave me to inspire, teach, create change, and lift up others until the day it goes away.
As I say every year, thank you to everyone who has supported me all these years. You all are one of the blessings in disguise that FND has brought me. Lastly, I am excited to announce that I have worked with the state of MN to get the Minneapolis Lowry Avenue Bridge lit up for the second year in a row on April 13!