I always start my story with I went to bed as LeaAnn Swinney and woke up a total stranger.
On September 2014 Labor day I suffered a bleeding stroke and brain aneurysm which led to brain surgery to relieve the pressure in brain. Due to a blood infection I caught in my mechanical heart valves after some routine dental surgery. The doctors told my family if I survived I would never be the same. After 3 months of learning how to walk, talk, chew, swallow, read, write and kidney failure due to the antibiotics I was on for the blood disease, the doctors were right about one thing. I will never be the same.
I used to always joke and say my life was like a roller coaster ride, plenty of twists, turns, ups and downs. Then I had a stroke and ended up on the brain injury roller coaster ride. I invite you to come along and take a tour of the daily challenges a survivor faces on a daily basis. You ready? Hold on tight, this could get messy.
First stop on this brain injury roller coaster ride is Overstimulation.
Did you ever own a kaleidoscope as a child? Maybe your children have one? All those bright shapes and colors tumbling around in a tube. The colors and shapes and colors begin to clash. Remember? That is what a survivor experiences every time we go out in public, or family functions. A kaleidoscope of bright colors, shapes and noise all coming from different directions and all different places. Like wearing 3D glasses permanently. Many of us get easily overstimulated in their own homes. Just the dishwasher running and someone talking is enough to have to have me in bed sick for the day. Nausea and vomiting are often side effects of this ride. Are you ready to get off yet? Buckele up!
Next stop is Fatigue. Fatigue isn't just like ooh I'm tired.. Its more like I actually cannot find the energy to eat, brush my hair or move and my body literally feels asleep. You feel fatigue all the way from your core all the way up to your crown. Your survivor is not lazy. Your survivor is fighting the worst kind of exhaustion imaginable. This the part of the ride a survivor really needs understanding and compassion. Next stop..
Brain fog. Close your eyes for just a minute please. Now imagine a thick, wet heavy fog curling up into your nostrils, up into your eyes, ears and seeping into your brain. Have you ever tried to swim in jello? Imagine yourself in a big tub of jello with Your head stuffed full of fog that hinders all rational thought process. Also know as fibro fog of mental fog. Many survivors live with this daily. Moving on..
Strokefocus, a social network survivors and caregivers use.
Insomnia. Did you know that many survivors only average abou 2 to to 4 hours of sleep at night? When my sleep doctor told me this I burst into tears. I haven't slept more than 4 hours a night in three years. Now she tells me I may never sleep again. After your strike or injury doctors and therapists tell you to get plenty of rest. Unfortunately 2 am in the morning is when the brain fog clears and our brains are working madly to clean up the mess. Your survivor isn't lazy. They are fatigued and tired, and fighting all if these battles each and every day. Now don't get to excited, it's not quite over yet.. Next we have what I think is the most dreaded part of the ride...
Headaches. Migraines. Headaches from brain surgery or any head trauma is not your normal lights flashing, zig zagging, fireworks show of a migraibe. A brain injury headache is more like someone buried a hatchet in your skull. Permanently. The pressure can build up to the point of feeling like the top of your head is going to blow off. Many of us live with this all day every day. Your survivor is walking around with a hatchet in their skull, sleepless, fatigued and with their brains full of jello.
As this ride comes to an ends there are many stops that we missed along the way. Memory loss, loss of friends, loss of family, fighting an illness no one can see or understand. Just imagine for a minute.. Your head is stuffed in jello and you have fog up your nose and your ears, there is a very cold hatchet buried in your skull, your memories are gone, your friends have all given up, you can't sleep, and fatigue gets you called lazy. As we end this ride please do one thing for me...
Hug a survivor today.