Chiari Carnival #7 Topic: How are you doing?
Theme: Finally answering truthfully.
The truth.Well...the truth is at this very moment I am fine. Not just the "fine" standard answer given to anyone in passing. Though it is true that "fine" is given a lot when I am truely not fine at all. It is just easier to say then to explain.
- On any given day I am in pain. I would say 98% of the time my head and neck are in pain. It may not be excrutiating, but it is very annoying. It has become second nature to me. It is a background pain. There is this constant achy feeling at the base of my skull (actually there isn't much skull there at all anymore since decompression surgery) It feels like a constant hangover. Imagine walking around with a hangover 24/7. That may be a good way to describe the "regular" day to day head pain. Loud sounds make me cringe. Some sounds more than others. Lights hurt bad.
- To continue on my day to day pain and issues....I have muscle weakness/get burning sensations. When I am in the shower my arms begin to hurt from washing my hair.
- Several times a day my arms, legs, hands, feet, and random body parts will get tingly and numb. I have had my lip, eyebrow, thigh, butt, and girly parts go numb at random.
- Balance...it's bad. I can laugh at this though until it hurts. I fall upstairs, downstairs, into stuff, onto stuff, sideways, leftways, etc. I can't walk straight.
- Depth Perception...Walking into walls, doorways, missing stairs, into people, things, etc. I can literally see that I'm walking into a door way and somehow end up walking into the door frame. Completely missing the giant hole to walk through. That is my most common problem. I have to watch the floor when I walk because I miss steps, therefore I fall.
- Dizzy/Lightheaded-vertigo....I can't move too quickly any which way or I'll get either. You know the staircases that go in circles? Yeah not good. And how about hotel (or any other establishment that have elevators also) staircases...that go up and around, up and around, up and around....makes me want to vomit.
- Difficulty swallowing. Yes this does happen. I really need to chew my food better.
- Ringing in the ears/Tinnitus...ANNOYING. every once in awhile my ear will start ringing so bad I can't hear out of it. Or it will just shut out sound. Not pop like when you're sick...just stop hearing.
- Fatigue
- Slurred/Tangled speech. I get this way too often. Especially at work. I trip over my words all the time. Sometimes I just start repeating the same word over and over again and can't stop myself. "...would would would..." before I can actually get myself to stop and get out the next word.
There are plenty more but those are what I experience the most on a daily basis. Sounds rough right? You don't physically see this stuff. You might see me walk into a wall. Ha Ha...ok its funny. But 30 times a day. (I may be exaggerating) and it's not just being clumsy. It sucks. The head pain sucks.
I honestly hate not being able to do normal things. This is my normal. I have adapted to my own normal. I don't drink alcohol much if any due to the head pain already. I don't need more pain on top of it. I'd love to relax and have a good time. When I start to...my head kicks in and says "alright thats enough...you're doing way too much" God forbid I laugh too much, I cough or sneeze too hard, or any form of strain.
Some days the headpain is real bad. So bad to the point of vomitting. My ice pack is my best friend. If I freeze it til I can't feel it...it helps a litte. Those days, its really hard to function, but I still do to the best of my ability. If I have to work I will go to work. I will put on a fake smile and act like I'm ok. I will be cheery as hell while inside my head is screaming and pounding. Those are the days that seem to take forever too of course.
"Smiling doesn't always mean you're happy...sometimes it simply means that you are a strong person."
Above is the truth.
It is 1:45 AM. I am working night audit. I will be at work until 7am. Currently my head is ok. Just ok. My feet are tingly. My neck is stiff.
And as this is apart of how I truthfully feel and every other Chiarian out there...here is the best thing I've ever read:
Written by Carolyn Gibbons
"My name is Chiari and I am an invisible chronic illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause your hea...d to explode and your vision to dim.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Try to have fun now! I also took Sleep from you and in its place gave you Brain Fog - Confusion and Disorientation.
I can make you dizzy and sick; fill your ears with constant noise and a whole host of other things that no one else believes. Oh yeah, I can make you feel anxious or depressed too.
If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons and I'm here to stay!
I hear you're going to see a doctor who can't get rid of me; I'm rolling on the floor laughing - tell him to keep trying! You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, told you are suffering from anxiety or depression, given pills that make you tingle, stuck with needles, scanned, and when they get really desperate they'll drill holes in your head.
You'll be told to think positive while being poked, prodded, and investigated by medical students, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is everyday.
Your family, friends and co-workers will listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember you can't do the things you used to 20 years ago".
Some will talk behind your back while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a person, and can't remember what you were going to say next!
In closing (I hope to keep this part secret) I guess you already found out…the only place you can get any support and understanding in dealing with me is with other people with Chiari."
September is Chiari Awareness Month. I am doing my part by posting everything I can on twitter, facebook, tumblr, pinterest, stumbleupon. Please help and do your part! It only takes a few seconds to share. Don't forget to LIKE Chiari-Life on facebook! Follow on Twitter @BearlyBurnt
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you description is perfect and on point. I had to laugh but not to hard because it hurts to do so. I find myself giving myself headaches from making myself laugh at times.
ReplyDelete100% nail on the head right here!!!
ReplyDeleteWow! I always have a hard time telling people what I feel daily. most try to relate and say... "oh yeah, I do that too, or I feel like that, or my favorite is I get headaches all the time. well great! then you have Chiari too? ummm..."no" well the difference is I have ALL symptoms at once everyday and there is no reprieve. when you feel hungover you can take something or eat or start drinking again and it goes away, but with Chiari, it dosent.
ReplyDeleteThank you for putting it plainand simple. I can just direct people to this read.
It is so hard!! 46 years old and still trying to get a life going. My life is empty because i can never feel good enough to want to do anything. Why do i feel hungover every single day of my life and not just a regular hangover its a huge hungover feeling that makes me spend all day trying to feel better. That is such a depressing life i can handle pain and blurry vision even the strokes but not feeling hungover every single day
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