Out of Control - Betrayed by Your Own Body

There are many things we tend to take for granted, because we have never really had to live without them. Such as breathing; it is a normal, everyday occurrence that many of us do not even think twice about. But take away our ability to breathe freely and we quickly learn to appreciate that what we once took for granted.

Feeling like you have control over your body is something I’m sure most people do not even think about. When you want your hand to reach out & grab hold of something, you usually have control over your body to make it do just that. When you have to go to the bathroom, but one isn’t available most can usually control their body to wait until one becomes available. It is something that seems so simple, but yet it is something we just don’t truly appreciate even in the small or larger scheme of things.

My journey with chiari has been one of heartache, confusion, victories, defeats, and survival. One of the things I find most challenging about it all is control… I am a person who likes order and control. I want my body to do what it is supposed to do and I want to be able to rely on it to get me through the ordinary everyday tasks that have to be done. The pain manages to knock me off my feet & often, but through most of it I still manage to function at some level and accomplish the things I need to do, while wearing a smile on my face. Sometimes the smile is for myself, but mostly it is for appearance sake so no one sees the amount of pain I am in. I love people & I love being open and honest about a lot of things. But when it comes to chiari & my pain, I tend to keep that a little closer to myself. I don’t want anyone to see the daily struggle, because at the end of the day I am simply April… I am just me…no more, no less. I don’t want anyone to look at me with pitty or feel sorry for me, I am just me…I am dealing with all of this the best way I know how. I do what I can & usually more than what I should, because I refuse to let pain and other symptoms keep me down.
But there are times that these symptoms from chiari aren’t just about pain, discomfort, or being limited in doing things. Some strike pure panic & fear in you to your very core. There is nothing to compare what it feels like to not be in control of your body. The not knowing if I can brace myself against a wall & walk myself out of passing out. The fear of how people are going to react if I do hit the ground. The helplessness of not knowing what your body is going to do & knowing it can betray you at any given second.

Today I went to the store with mom. I get so tired of being cooped up in the house & it’s nice to get out even if it is only to a store to walk around for a few moments. I was simply looking at candles and mom nor I  thinking twice about it she walked on doing her own thing. As I decided on the scent of candle I wanted I grabbed two in my hands & turned to go put them in the cart mom was pushing. As I turned I felt light headed, the room was getting darker and closing in on me. As I reached out to grab hold of mom to brace myself she wasn’t there so I grabbed hold of the shelf after putting both candles in one arm. It was pure panic… I was afraid of blacking out in public, I was afraid of the candles hitting the floor & shattering, what it would all look like, any commotion it may cause, and the list goes on. So I stood there; eyes closed bracing myself up hoping it would pass, but it didn’t. Taking a deep breath easing away from the shelf I began to take small steps toward going & finding mom to help get me through the store. I managed to find her after taking several breaks a long the way & used her cart to brace myself up to get through to the check out. And wouldn’t you know we ran into a wonderful friend I hadn’t seen in years. Of course nothing but smiles & a hug followed by “how are you doing?” In response I smiled and said, “I’m okay. Coping.”
But once I got home behind closed doors, away from everyone I just broke down and cried. I can say it is not fair to be young and have to deal with this, but it’s not fair no matter what age you are. No one should feel like they are not in control of their body. It is one of the most miserable feelings. A feeling that would make it so easy to lock yourself up at home to avoid making a scene in public, because your body just won’t cooperate like it is supposed to. It’s embarrassing to say the least. But you take a deep breath and you keep putting one foot in front of the other day after day. You manage somehow…you cope… you make it…against all odds you somehow make it.

This picture was taken before typing this blog. Amazing how we never "look" sick. If only it looked like what we felt...that would be pretty scary. 

Chiari Symptoms & Some Associated Conditions

Chiari: Standard of Grace Not Perfection

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.