My Life With Chiari

I wrote this for a lady on a Chiari website. And since I’m whining today I decided to post it here too.

 

Looking at my life since Chiari is like looking through the wrong end of a telescope. My life went from active and open with every possibility to minimal in the extreme.  Over the roughly ten years since I was diagnosed with Chiari, I have gradually whittled away pieces of myself, my activities, my dreams, my relationships, and my possibilities.  I am left with the knowledge that I am less.  Less than I could have been, less than I want to be, and less than others expect me to be.  It is a constant humiliation. It is a constant pain in so many ways that it’s hard to imagine putting them all on paper.

 

I live in an almost constant state of dread…..I dread the beginning of each day because I know that before the day ends I am going to wish I lived a hundred years ago when people died early.  I dread laughing because if I do, people are going to expect me to do things that I either can’t do, or that I know if I do them I will pay for them later.  I dread the disappointment in the faces of the people I love when I say I can’t. I dread housework. I dread parent teacher conferences because I am usually so distracted that I can’t ask questions, I can’t think right, I can’t make promises. I dread getting a great idea because I know that it will come to nothing, because if I don’t forget it all together, I won’t be able to follow through and that is one more disappointment to add to the millions of others I’m stacking up.  I dread, and when I say dread I mean DREAD going to the doctor.  I have apparently been branded as …..I’m not even sure what. Every time I walk into a doctor’s office, they take one look at my file, smirk, and shake their head.  I am apparently an idiot because I walk in with hope every time and I walk out wishing a really big heavy truck would just hit me and take me out of this. I dread coughing(headache), using the toilet(headache), changes in weather(headache), heat(dopiness), happiness(creates expectations I can’t meet), sadness(thoughts of suicide), hope(leads directly to devastation), open spaces(nothing to hold on to), battery operated toothbrushes that my dentist HIGHLY recommends(makes me fall down if the casing touches my teeth), driving or riding in a car(obliterates my consciousness), other people’s hopes(disappointment), dreams and desires(disappointment), other people’s disappointment(wish I was dead), waking up(what new symptom, disappointment, limit), going to sleep(what will happen in the night to my brain), Wal Mart or any other store(makes me sweat and lose my mind), cooking(can’t remember the order of things to do), gardening(poor plants), mowing the lawn(vibration of the mower screws my brain to pieces), school programs that take place after 4:00 pm(too tired, too brain fried to go). This list is longer than there is time to read it.

 

I live in fear of the fallout from my symptoms. I fear open spaces because I fall(broken ankle complete with a metal plate and nine screws from stepping off of a 6 inch porch). I fear going out in public(because I have bladder and bowel incontinence). I fear that my husband and kids will get sick to death of all the things I can’t do and gradually disappear just like the rest of my life has. 

 

I used to have a life.  My husband and I used to go all over the place doing all kinds of things. We used to go to Bike Week at Daytona Beach in Florida every year. We used to go camping. We still go camping but it’s a huge production getting all my ridiculous accessories ready to go with me. And every time we screw up the desire to do anything it’s always with the knowledge that at any moment from start to finish I might have to just come home.  I used to have a job and be a contributing member of my family and society. Now I can’t remember anything.  I have lost large blocks of my life. I’m not even really sure anymore who I am, much less who I used to be because I have lost so much of myself.

 

I used to have friends. But little by little people drift away to find people who can DO things with them.  I’m ashamed to invite people to my house because I can’t keep up with housework.  I can’t bend over to pick things up, I can’t lift my hands over my head to sweep down the cobwebs, I can’t stand very long so the dishes are constantly piled sky high, I can’t even wash my hair regularly because I can’t close my eyes without falling over and I can’t hold my arms up very long to wash it, and, and, and, and. I get FUBAR’d when I ride or drive. 

 

The last time I actually tested my IQ(which was in the early nineties), it was 147. Not bad, right? Well…..it’s not good. Because I’m stupid most of the time. I used to be witty, and funny and smart. But now I get a joke the next day if at all. Partly this is because I can’t tell what people are saying.  My neurologist had my hearing checked once because of that, even though I told him that I could repeat back to him every word he said verbatim, I just didn’t know what those words meant at the moment.  That 147 doesn’t work in my favor at all.  Everyone just thinks I’m lazy, I’m lying, I’m conniving.  I went to a neuropsychologist twice. The first time she told me that the only person who had scored higher on her testing was a Neurosurgeon.  The second time I went I scored higher than him. Then she told me that there was NOTHING wrong with my brain.  After that she leaned in close and whispered…..Are you trying to get on disability?  I was so humiliated, so ashamed of myself for even being there, for wanting to find out what was wrong.  And now, even though it would help immensely, I’m too ashamed to file for disability. And every day I wait, the money I would get for it dwindles down.

 

One of my pupils is smaller than the other. Sometimes I get this thing, it’s hard to describe but I’ll try. I feel like I’m being choked only not choked of air. I can breathe just fine but when you hold your breath for a long time your face gets red and your eyes bug out and it’s like that. Just this pressure in my head like it’s trying to explode. Then I hear a buzzing sound that seems to match a heartbeat and I hear what sounds like the whoomp whoomp whoomp of a helicopter. While the buzzing and the whoomp are going on I see blue flashes of light. Neon blue. It’s really pretty. After that the pressure goes away. But while I have the pressure, the size of my pupils is REALLY different. That one scares me. I told my Neurologist about it and he set me up an appointment to have my CSF flow checked….a week later. I guess I’m stupid for wanting to have it checked while it’s happening. I’m really not sure anymore what I should expect, what’s stupid, what makes sense. Nothing in my life really makes sense anymore.

 

I hurt. Physically I am in pain almost constantly. Emotionally I AM in pain constantly. Mentally I’m too stupid to be in pain constantly and so I continue to hope. I hurt in my neck, my back, my arms and legs to a lesser extent. I would give anything on this earth to just get a massage, a neck rub. But my family are terrified to touch my neck. I feel like a leper sometimes.  Years ago I would still ask for someone to just rub my shoulders for a minute. Now I never even consider asking anyone to touch me.  My skin starves for some basic human contact. Instead I just get someone to put my TENS unit on and then I cry for a while.  Cripes I sound so damn pathetic!

So there you have it. Look fast because pretty soon you won’t be able to see me anymore.

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5 Responses to My Life With Chiari

  1. Miami Dental offices

    Hiya Thanks for the information

  2. bluejay says:

    Your post helped me. I am waiting to see a neurosurgeon now. I am at the beginning of this journey, and I will admit I’m depressed and frightened. It helped me to read your symptoms – I experience these, too.

    Please update us and let us know how you are.

  3. varnya brown says:

    Hi there
    I feel your pain so much, ur life sounded exactly like mine , the way you have described how your brain fog is wow i actually thought i was reading my own story.
    I too have chiari, i was diagnosed aug 2010 but have had chiari my whole life.
    In 2 years my life changed due too my illness as well.
    Please try and stay strong never mind of people who have dissappered in your life, for the people who live with you everyday do love you and will always be there when you really need them.
    Have you had decompression surgery yet???
    I had decompression surgery 5 1/2 months ago and i must tel you, it was the best decision i have ever made. As each month ,each day goes on i know that im getting my old mind back slowly but its coming back i am remembering things that i thought were long gone…
    No decompression is not a cure but it dose hold back the progression of our illness so we can at least try too live a reasonable life again.
    Decompression was my only hope i went from living a happy busy life too a non excistant life, goin in n out of consciousness not walking properly or speaking properly ,over 150 seizures in 2 yrs, too seizures in my sleep, passing out at the dinner table like a small child dose. I didnt think the surgery would change much but it has. Even though it waz brain surgery and i was in pain from the surgery when i woke up, the actual chiari brain pain the squezzzed brain pain from the 9mm + herniation not much cfs flow hardly no room in my head for anything THAT PAIN WAS GONE!!!!! i could not feel the pressure deep inside my head anymore i knew then my life will change again.
    Please contact me if you want too talk about how your feeling would love too listen as i truely and deeply know how you feel. And understand our invisible illness!!!!!
    Sending you my depest regards
    I do hope my storie can give you some hope in life.
    Varnya brown xo

  4. Anonymous says:

    Please, hold on! I am sure your family loves you so much. They accept all you can not do and love you the way you are! It can seem umbelievable to some people, but those who love us only care about how we feel, and they are happy if they can feel our love. Make your family understand that you love them, that’s the only important thing to them. Don’t spend your time dreading those who do not deserve it or who do not believe what you say. PLEASE, try!

  5. Anonymous says:

    I was crying when I read this, have Chiari myself… 😦
    I wish you lot of strenght and give you big hug.

    Kati

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