What is it? For me the struggle is called Chiara Malformation. This is a fancy medical term that simply means my brain doesn't fit in my skull and so it pushes into my neck. Eww right?!
The list of symptoms is long according to Wikipedia.
What does this mean for me personally? It means I hurt. I hurt all the time! I hurt when I get dehydrated. I hurt at high altitudes ( I live in Colorado y'all). I hurt when I bend over. I hurt when I squat down. I hurt when I lift heavy items (including my toddler that I pick up 40 million times each day). I hurt when I laugh, cough, sneeze, jump, hold my breathe, look up, and well... you get the idea. It also means that I get dizzy often. I get nauseated at random times for no reason. I SNORE. Like epic chain saw log thrashing snores. My husband will attest to this one. It's bad y'all. I get tongue tied and smoosh words together. My sister calls it my "blenting". I start with one half of a word (blend) and end with the second half of its synonym (put) i.e.- BLENT. It happens so often that my hubby and kids hardly notice anymore. I also have Narcolepsy and fall asleep setting up often. This aggravates the hell out of my Chiari. Sounds like a-lot of issues right!? It is! The pain is really the worst though. It has limited many activities that I used to do regularly. I can't play golf, tennis or volleyball anymore. I can only play softball or catch with my daughter for short periods of time and only on "good days". I can only jump on the trampoline with the little girls and can barley let my heels leave the surface while still keeping my toes down. I did a cartwheel in the back yard teaching my 6 year old- hurt so badly that it made me vomit. I can't pull weeds or pick up items off the ground. Example- I picked up 6 pairs of shoes from the floor by the back door yesterday to set them on our shoe rug. I was seeing stars at the edge of my vision by the time I finished because the pain was so intense. It took me maybe 5 seconds to pick them up and move them. That's it. I bent over and stood up 3 times. That's it! I have to remind myself not hold my breath or over extend my neck by looking too far up while I swim. When I get a cold I will loose my voice almost every time because I refuse to cough unless I absolutely can not physically hold it in. Coughing is probably the worst trigger and pain. It feels like someone opened a fire hydrant in my head and the water pressure is trying to release through the top of my skull. Fun huh? I can set on our couch. It's to fluffy and soft, the back is too low and I set too far back causing my shoulders to slump and my head to hurt almost instantly. I set on our barstools at the kitchen counter instead. I can't turn around in the car to look into the back seat when one of the kids says, "Mommy look at this!." I have found only 1 pillow that I can sleep on that doesn't do more harm than good the next day. DON'T forget it when traveling or plan on a ruined trip! This list goes on and on but you get the idea. It HURTS!
I am not telling you this to gain sympathy. I am not WHINING! I am telling you this because I want you to recognize that EVERYONE has struggles. Everyone is fighting a battle. Just because you can't see that battle doesn't mean that it isn't happening. I have no physical characteristic that alerts people to my condition but it is there all the same. I am almost always hurting and sometimes could really use a break! People all need to be kinder to one another. Be more compassionate and sympathetic. Realize that we are all on the same journey but the path is different for each of us and some of us have a bumpy damn road. If you are struggling- don't feel alone. Don't let this struggle define you but also don't act as if the struggle isn't happening. Ask for help when you need it. Kick-ass and take names when you can. And for the love of all that is Holy be kind- to everyone- ALWAYS!
