Imagine you woke up tomorrow and everything you knew about your average life had changed. When you woke, you discovered you were in pain, dizzy and couldn't think clearly. You take it easy for a few days hoping that things will get better; but, they don't. You discover you have some rare brain condition that requires brain surgery. After a bit to prepare, you have brain surgery hoping to finally be rid of these crazy symptoms. Once you heal from surgery, you realize that you have not been cured. Actually, it's quite the opposite. You are now worse.
Welcome to my life. I am not seeking your sympathy. I am not looking for pity. I merely want you to understand a bit more about what it's like to live with a chronic, invisible illness. This post will explain some of the weirder symptoms I cope with on a daily basis. I hope you finish this post with a smile on your face, a deeper understanding of chronic illness, and a greater appreciation for your health.
As a general rule, you wash your hands after using the toilet. Imagine you get confused while washing your hands and when your done instead of turning off the water you turn off the lights. You stand there wondering why the water is running and why you're in the dark. Let's not forget the time the you put the milk in the pantry and the Cheerios in the fridge after making a bowl of cereal. How many times now have you made yourself a bowl of ice cream or a glass of tea only to watch it slip out of your hand. It falls to the floor with a loud crash and you haven't the slightest idea of what just happened. Then there was the time that you brushed your teeth and spit on the floor instead of the sink. You then sat there wondering who was going to clean that up. Just another day in your life.
We've all had that dream where we fall off of something really high and we wake with a start before hitting the ground. Imagine waking with a start, thinking your going to die without the dream. You try to collect your wits; but, that feeling does not immediately dissipate. As a matter of fact, your thoughts are still racing, you want to crawl out of your own skin and you can't slow anything down. You just want to it to stop. Hopefully, you could just run away from yourself; but, you'd settle for death because it would end this waking nightmare. Welcome to a sleep related panic attack. Your one of the lucky ones, you're blessed with 2 or 3 of these a week.
Then there are the nights that you can't sleep at all. You're exhausted; yet, you can't sleep? You can feel the anxiety beginning to creep up inside you like little insects making their way from your feet to your brain. You try reading, watching tv, watching boring documentaries, taking a cold shower or a warm bath or anything else you can think of just to avoid the panic. Nothing works. On a good night you avoid the panic but get not one wink of sleep. Other nights it's a repeat of the paragraph above.
Imagine you've scheduled a dinner date with friends weeks in advance at an upscale restaurant. You get seated at the table the waiter brings the drinks and a few rolls which you enjoy. After the waiter has taken your order and you are enjoying pleasant conversation when out of the blue you begin visibly shaking uncontrollably. You now find that everything is confusing. You realize your in a restaurant but your not sure of anything else. The waiter returns to find your shaking and generally looking terrified. You are unable to eat but you are able to allow your friends to eat while you continue to visibly shake. Yep, you've now become the perfect dinner date.
You've planned on going to the mall with your girlfriends for a couple of days now. Even though you're not feeling your best, you decide getting out and meeting your friends at the mall will do you some good. You're struggling a bit but you're enjoying the afternoon with your friends. You're walking through the mall when suddenly you pass out cold. Yep, that's you laid out in the middle of the mall on the cold tile floor. You come around after about 30 seconds or so but it's been long enough to cause a scene. You look around to realize your friends are all completely freaked out and the ambulance is on its way. Great shopping trip, enjoy the embarrassment.
You and your friends have decided to go to a neighboring town where your meeting up with more friends for a film festival, an art exhibit or music festival. Your set to leave tomorrow afternoon, your bags are packed and you are anxious to get out of town for some fun. You wake that next morning to discover you have a raging migraine. One of the worst you have ever experienced. The medications you normally take fail you. While your friends are leaving town for a great weekend, you are sitting in the ER waiting room desperately seeking Dr. Kevorkian.
This really cute guy has taken you to a lovely and medically uneventful dinner. Then you settle into your seats at the theater to see the latest box office smash hit. He reaches over to hold your hand and you smile to yourself thinking what a great guy he is. After a bit, the nerves in your arm begin acting up. You know it's not real; but, it feels like there are bugs crawling up and down your arms. You begin to twitch just enough that he begins to wonder if holding hands is making you uncomfortable. This sensation continues to get stronger and continue up your arm to your neck. Once it reaches the bottom of your head your whole body twitches and you let out a loud grunt. The entire theater turns to look at you. "Hi everyone. Just me and my crazy neuro condition."
THE BIG CONCERT:
You've been anxiously awaiting the concert for months. You've heard that the singer gives an amazing performance and you can't wait to see it all from the third row. The lame opening act has finished their performance and they have brought the house lights up for a short intermission before the big act. Suddenly, you head begins pounding and you know that you have to do something to avoid the ER after the concert. Luckily your doctor has prescribed you these fantastic shots that are aces at relieving major migraines. There's just one problem, you don't want to miss one second of the concert. Instead you decide to have your friend give you a shot in the ass right there in your third row seat where everyone in the theater will have a bird's eye view of your ass. She pulls out the needle just in time for the curtain to rise.
All of these are situations which I have experienced as a result of my condition, Chiari Malformation. These stories are endless and will continue you until my body finally gives out. I'm exhausted from dealing with these constant idiosyncrasies. The thing that you have to remember about a chronic illness is that it's, well, chronic. It never goes away and you never get a vacation from it. This is going to sound harsh; but sometimes I'm jealous of other diseases such as cancer. Most cancer patients either go into remission or, sadly, they pass away. Either way, there is a definitive end to the condition. No matter the length of my life I will live with this condition. I will live with all these frustrations, irritations, confusions and abnormalities. Now, I'm not saying that I wish I was dead or that I feel cheated out of a normal life. I've learned a lot from being sick. I know more about how to live happily than most healthy people even realize. I just hope that the next time your having a rough day stop for a second to be grateful. Your bad day will pass soon enough and your life will return to it's healthy and blissfully unaware state of grace. While your bucket list reads like a wild adventure, my bucket list is full of things I can never accomplish for fear that doing those things will make me kick the 'bucket.' I'm not sour about the things I can't do, I just live my life by a set of rules that's a lot more complicated than you can imagine. Please, I'm asking that you take a few moments to really appreciate the ease with which your health allows you to enjoy your life. The next time your out with friends having a drink, raise a glass to me (even silently) for I've just shown you the true meaning of gratitude for a live well lived.