In The Summertime
Everyone has a favorite season. Some prefer the twitterpation and blossoming of spring, the colorful leaves of fall, or the snowy white of winter. Most, however, prefer summer. Summer brings about images of sunshine, palm trees and sandy-white beaches; beach balls, water parks, and, most importantly, in the words of my nephew- “no more pencils, no more books, no more teacher’s dirty looks”.
Along with the summer flare of bikinis and tanning lotion, comes the incessant rainy weather, heat and humidity, especially in the little corner of the world I call home.
While I can see the appeal of summertime, I would rather be shoveling snow and buying tire-chains than melting in the hot summer’s day, every day, for a minimum of 4 months. To further my argument: if you’re cold you can never put on too many layers of clothing, but when you’re hot there’s a limit to how much you can take off.
It wasn’t always this way for me, though. For a decent portion of my life, I too was captured by the lure of summer vacation. Now, however, I have NCS, which has the unfortunate effect of turning fun-in-the-sun into faint-in-the-sun.
It works like this: the increase in temperature results in the dilation of one’s blood vessels, which causes a reduction in blood pressure. Blood volume is also lessened due to the evaporation of water in the blood stream. Combined, it leaves even the healthiest of people with a lower blood pressure and those with NCS unconscious on the ground. People with NCS generally have low blood pressure and poor circulation to begin with. When additional factors are added to the already fragile state, the situation becomes even more unstable, and can consequentially lead to dizziness, lightheadedness, fatigue and fainting. In fact, the majority of my fainting episodes have been in hot environments, like the shower, or while outside during the summer months.
Useful tips: Try to stay in air conditioned areas. I carry a handheld electric fan everywhere I go. I keep a small one in my pocketbook and never leave home without it. I also recommend, as usual, extra salt pills to keep blood pressure up, and plenty of Gatorade. And when I say “plenty of Gatorade” I mean plenty of Gatorade. On especially hot days, if I know I will be out for a while, I keep at least 2 bottles on me at all times. Even if you don’t have NCS, it is always important to drink lots of water. For those of you who know someone with NCS- do them a favor and encourage indoor play during the summer. If you have to go outside, call ahead to the location and ensure there are plenty of places for the person with NCS to sit down and cool off. Little things like that can go a long way, and will be much appreciated, even if they are too embarrassed to say anything. We in the NCS club are fully aware that we are a pain in the ass to deal with, and because of that, we may not always speak up when we should. Just because we’re not being vocal about it does not mean that a problem doesn’t exist. Patience and understanding are absolutely fundamental to our wellbeing. If we all work together, there is no reason that a person with NCS cannot enjoy their summer just as much as the next person. After all, in the words of the great Alice Cooper, “school’s out for summer!”
Doubt: Proceed With Caution
Doubt is a very powerful feeling. It can be extremely hurtful, cause discord between friends and families, and result in the alienation of people that deserve much better- much more trust than they have been given. Since waking up that one morning with an unrelenting bout of NCS, I have had to face numerous individuals expressing their doubt, and there’s probably a lot more that I don’t know about. I try to understand their side of it all. That I look normal and sound normal and I have all my functioning limbs and parts. I stand and sit and walk just like everyone else, and they haven’t actually seen me faint on the ground at their feet. “If you look like a dog, smell like a dog and bark like a dog…” So what’s the problem?
Well, the problem is the vertigo, and the feeling of fainting I get on a regular basis. The only reason I do not actually black out completely and end up unconscious on the floor at their feet is that I have a kick-ass doctor that found me the right combination (or as close to right as is possible) of medications. So no, there is no physical sign on my forehead that says “Beware, This Person Has NCS, Proceed With Caution”, but to those people who are my friends, my family, even strangers who meet me for the first time- the fact that some of them experience that doubt and disbelief, that is just them placing a black mark on my character. So what do I do; how am I supposed to feel when it is my family, my friends, who believe I’m just spinning a complex web of lies? Personally, it’s almost flattering. I wouldn’t have thought myself to be that creative. I’d like to think that I’m a moral person; that I always tell the truth to the best of my ability. When people that I love and trust don’t believe me, or make less of it than it is, especially while I’m struggling through something I don’t truly understand, and am in need of their support more than ever? How do I deal with that without simply alienating myself from those around me; those that I would have trusted and believed and done everything in my power to help and be there for in a heartbeat?
“It’s all in her/your (<– insert pronoun here) head.” That 5 string of words are the most saddening and hurtful words that have ever been uttered in relation to me. It has unfortunately been repeated by several people, whether to my face or to others who have told me. And yes, there is a bright side, “at least you know who really loves you.” I know this will come out sounding wrong, but they were all supposed to have loved me. I need to be clear on something though- I’m only speaking of a select few from each category. My brothers tease me about “living” in my bed (as if I had another option and wouldn’t have preferred to be elsewhere), my best friend told everyone in sight I was making it up to get out of going to school, and a random Neurologist with an omniscience-complex I had went to for the first time also questioned if I was making it up- just because he had never heard of such a thing, which meant it couldn’t possibly exist. Mostly though, people either feel they have no reason not to believe me, and many have seen NCS in action if they spend enough time around me, while others just don’t care enough to even form the doubt. It is a whole other issue when they forget I am disabled (NCS IS legally disabling), and proceed to get annoyed when I tell them I’m unable to do something or go somewhere that they wanted to. That occurrence has cost me too many friendships.
I had a pair of friends that I knew would be great together. I did the only thing any decent friend would do and set them up- they immediately became boyfriend and girlfriend and stayed as such for years. In the interim, they became very busy with work and school and family, leaving very little time for all their groups of friends. They decided it would be best if everyone got together at once to hang out (“kill two birds with one stone”), but they would hold these gatherings at places I couldn’t attend- like roller-skating or ice-skating rinks, or in comedy clubs, nightclubs, or restaurants where the parking was located 20 minutes away from the establishment and I couldn’t make the walk. Sometimes it was in outdoor malls and they wanted to “walk around”, or places far enough away that I couldn’t drive to them. Each time, I explained why I couldn’t go, to many protests: “You don’t have to do any skating! Someone will always sit with you, don’t worry!” to which I’d reply “I don’t want to have to be babysat or watch everyone else have fun while you alternate being on duty.” It’s downright depressing, I wasn’t going to make anyone else suffer for me, and what did they want? For me to sit off to the side watching everyone else have fun? No. I tried giving suggestions of activities or places I could manage, but they refused for one reason or another. And so one day, they decided that I wasn’t putting any effort into our friendships and gave me the boot. How sweet and sensitive of them.
I’ve come to the realization that even when people completely believe that you have NCS, they usually don’t understand it, and it can cause more problems than if they didn’t believe you in the first place. For example, forgetting you can’t climb that flight of stairs, or not comprehending why you can’t walk around the mall, or why you can’t go dancing at their favorite nightclub on their birthday. The most recent occurrence involved a professor not understanding why I needed to leave an unairconditioned classroom. I later received an email with the statement, “It wasn’t all that comfortable, but the rest of us managed just fine.” As if I can be compared to the rest of them? I’m NOT normal! Heat is the worst environment for me. It was actually after that happened that I got frustrated enough to go searching for medical articles about NCS. What I came away with was the knowledge that there is a community of people having to deal with NCS just like me, with similar concerns, issues and experiences that I have had. I finally found people who understood what it was like to not only have to deal with NCS, but to have this ever-present doubt from the people in our lives. This was the confirmation that I so desperately sought and never realized I needed. It really wasn’t “all in my head”! I have had others with NCS describe to me how they had to quit their jobs, how terrifying it is to live with NCS, and how a lot of the people they seek support from return nothing but doubt or skepticism.
It is sad that people with NCS have to deal with other people’s doubt, especially when they are going through something so life changing and scary that they themselves do not fully understand. Doctors will tell you how it works and why, but only the individual can figure out what makes the symptoms better or worse, what environments to avoid or how long you can stand before the floor greets your face. We go through a constant trial-and-error for just about everything in our lives, never knowing what could be the next trigger.
So how do you communicate to others what is going on with us dizzy-folk? How do you provide the necessary information in the correct fashion to cease the doubt, the lack of proper comprehension and misunderstandings? Easy. You get one person to start a blog 🙂
Living With Neurocardiogenic Syncope (Vasovagal Syncope) / POTS (Postural Orthostatic Tachycardia Syndrome) 