There’s a struggle in knowing what it is I should be able to do & what I can actually do.
At my age I should be out conquering the world, building a family, & having the best times of my life to date. Sadly the reality is I have a chronic illness; the monster by name is called Chiari.
What? Chiari? What is that? Did I say it right? I have never heard of that. Is it really a thing? What does it mean? You don’t look sick. It must not be that bad, since you still look good.
The reality is chiari is real & even more so it is for lack of better words… COMPLICATED!!
Never heard of chiari? Join the crowd. We are told it is rare, but it seems to be becoming more common; which breaks my heart. So what exactly is chiari? In simple terms our brain is too big for our skulls to contain. The brain & tonsils of the brain tend to herniate down out of the skull & get pinched between the skull & spinal cord cutting off or restricting the CSF (cerebral spinal fluid) flow to our brains. It in turn causes numerous symptoms that vary from person to person. Remember when I said, “Chiari is COMPLICATED?” Well here’s the thing, Chiari is not the same for everyone. One person may have over a hundred different symptoms that are severe & excruciating while another may have little to no noticeable symptoms at all.
Back in the day researchers & Drs measured the severity of chiari based off of the herniation size only. Now thanks to more research & CINE MRI’s it has been shown that the size of the herniation has very little to do with the symptoms. It has more to do with the blockage of csf flow.
Symptoms can range from any variation; it’s our brains we are talking about…that affects anything & everything!
Here is a list of the most common chiari symptoms: (photo source; www.conquerchiari.org)
Most days I wake up feeling defeated before my feet ever touch the ground. Insomnia is huge and on the rare occasions I sleep more than a few precious moments I am woke up from pain. My head hurts so bad that it demands to be felt, pulling me from my dreamy state to the harsh reality of what my life is with chiari.
I am fairly young and although my mind says I should be out conquering the world, working, building a family, & experiencing the best days of my life there are days that my greatest accomplishment is dragging myself from the bed to the recliner; sometimes there’s the added bonus of having enough energy to shower. My head and body hurts in such a way that I can’t begin to describe, much less make it to where anyone can understand it. The pain is so bad you want to cry, but you fight to avoid the tears. Why would you fight to avoid the tears? Simple… crying makes it hurt that much worse. Laughing hurts, singing hurts, everything hurts & makes it worse. So rather than shed those tears, you take deep breathes, close your eyes, & pray. Pray or help, relief, mercy, even just a moment free of pain.
But you don’t look sick…
Me being who I am… I will scarcely let anyone see my pain. Even those rare few who are in my inner circle or family will see the pain I am in. I am a fighter. I am ashamed of my illness…and who it has left me as. I have always been the one to put on a smile regardless of what is going on around me. As Elsa (Frozen) sings,
” Don’t let them in, don’t let them see
Be the good girl you always had to be
Conceal, don’t feel, don’t let them know
Well now they know,’
I conceal, I cover my pain with a smile, what I hope is a good attitude, & determination to do my best. One of the most valuable lessons I have learned on this journey is to hold myself to a standard of grace not perfection.
(image source: Pinterest)
As a perfectionist who loves to feel in control; this has been an interesting and challenging journey. I am still a work in progress. I hate the feeling & knowing that I am not always in control of my body & what it may do. I despise the fact that I have tried treatments of every kind, including brain surgery & nothing has helped. But, I keep trying. There are times I have to take a break… the poking, prodding, cutting, medications, treatments, tests, etc just get to be too much; and I need a break. But I always get back up & get back out there to try anything to feel better & find relief.
Some treatments & medications that Dr’s think will help; makes me feel worse. This past week I was put on Alzheimer’s medication as an attempt to get relief. My dr’s aren’t shy about telling me how everything else has failed to help & it’s a struggle trying to come up with new things to try when you’ve tried pretty much everything. So here I am trying this new medicine that makes my head hurt twice as bad, but for now I will keep taking it & toughing it out just to see if it gets better.
Today is one of those days where I am having to remind myself that one way or another; no matter how bad it looks or feels I am going to make it. How am I going to make it? Honestly, I don’t have a clue, but I refuse to give up. I will continue to pray & believe for miracles for the entire chiari community & all others who are suffering.