Thursday, December 10, 2009

New way to walk?

Do you know what it is like to fear telling people how you are doing or how you are feeling? It's like I fear judgement or doubt or "glances"... Maybe its because I desire understanding and there are few that can feel that same experience with me. Or maybe it's the undescribable feeling that drove one person to create "ButYouDon'".

I try to stay positive most of the time. Although sometimes it feels like a whole lot of whining... The pain is not a deciding factor for whether or not I am "happy" to use a very lame term. I have been in pain for a very long time. A lot longer than anyone realizes because I have never much complained about it before. Why? Why talk about it if noone will understand and will judge or make you feel like a fool? Why share if there are ways to compensate, to deal with it by yourself? Do they really need to know if all they are going to do is have a harsh unbelieving word for you?
Anyway, the pain I can deal with when I am ok in every other way.

I love my better half so much. Tonight he said "do you think I like to see you in this much pain? You're never happy anymore. You never smile... etc etc heartwrenching words..." First I feel the need to correct part of this for those of you who think "oh no she's that miserable..." I never smile anymore because I can't smile... My face is to damn weak and it hurts more than it helps...
Could you possibly understand what it feels like for a smile to hurt???? My eyes are sad when my muscles are to weak to hold them in a permanent "twinkle". I would LOVE to be able to smile and "twinkle" again!!!!

I MUST tell the world (or the few that actually read this) that it is not the pain that makes me not smile or "twinkle". I have pushed past the pain many many times to even fake it if I don't really feel it... Faking it right now would be a pleasure compared to not being able to do it...

What is driving me into this utter place of misery is the inability to think, the clumsy drunk legs and hands that don't work, the brain fog and not being able to remember anything... having the very sweet voices of my children sound like untuned violins or fingernails on a chalkboard in my head... the lights that make my eyes have their own sparklers... never knowing when I am suddenly not going to be able to see the world clearly, literally... Or even when suddenly I go from seeing one item to two crisscrossing items... when I am pressing fully on the brake but it still feels like I am moving... when my hands tremble or my teeth chatter or I get feelings that I can't possibly explain to someone else... when "daydreaming" has no real meaning except that someone saw me staring off, which was probably a seizure... when I have a seizure (may or may not know it) but I can feel it coming on and I can't move or speak or even breathe.

DO YOU KNOW WHAT THAT IS LIKE????? To not be able to move or speak or breathe and to know you are about to have a seizure and not know what you will be like afterward? "If I have this seizure, will I be able to take care of my kids after or will I be zonked like last time, because I am all by myself this time..." Do you know what that is like to have SO MUCH RESPONSIBILITY on your shoulders with no help, no end in sight and not knowing what the future will hold??????

Ok. Sorry. I named this post New Way to Walk because I was going to describe what walking has been like the past couple of days, as it is not something I am accustomed to, but the post turned into a cry of desparation instead.

Walking is odd. My muscles are so weak and jerky that it has turned into strange movements. I do think at this point that having the extra mobile joints is what is keeping me walking (with God's help of course). Being able to "lock my knees" and hips keeps me upright. If I try to unlock them and stand in what would be straight for someone without EDS they buckle for lack of muscle support. So walking is like lock, unlock, one leg then the other, slow and jerky, but moving forward. I guess that's what counts right? No balance. I fell tonight trying to stand in Josh's room. No balance. Well, tomorrow will be a new day and we'll see what the old puppet legs are like then. That's what it reminds me of, "Marionette puppets"
I think they are called. That's what it feels like.

So there. That is how I feel. I'm sorry if I don't smile as much, I understand pain is something that I have and will continue to learn to live with, but the emphasis there is on "LIVE". I can live with pain, not just survive, but thrive and "smile" inside and out, even in pain, even if the smile is fake on the inside. But the rest of this I cannot smile with. I am sorry. If something happens with the kids or my family or work that really makes me forget the "lost grumpy old man feeling" I have then I certainly smile as much as my droopy face will let me! I do not look "pissed offff" or sad on purpose. And if it makes your day bad and makes you not want to talk to me, well then I am very sorry.


  1. I totally understand....I wish I could just smile and twinkle....

  2. I understand. My husband and son have epilepsy (an inheritesd sort, one of the few). A neurologist told me when I was so sad on learning that we had genetic conditions on both sides - that my son was complaining of pain in his muscles and exhaustion as you describe and stiffness because he was fitting in his sleep. Which is exhausting for his muscles - the misfiring neurons and synapses tire not only the mind but the body too. So I do understand because as you know I have EDS. I have a droopy one side of my face and look at photo's of myself which by the way I hate and everyone is smiling and I look pissed off. I'm not but I look it. Sometimes husband's can say one thing and mean another I find. Mine says things like that when he is worried and doesn't know what to do and it comes out all wrong.

    Trish the weird thing is often hidden inside a post I see a humorous woman with a real zest for life - . If only the world knew just how much we smile eh when inside we are screaming.

    A hint of anger here is a good thing I think.

    Take care trish.

  3. I know what you mean about not smiling. Usually that is my first clue I am getting a migrainie - when I feel OK but I can't get my mouth to turn up. It is frustrating to get people to understand we aren't doing it on purpose and we really wish we could plaster on a fake smile like everybody else. People can be so superficial :(

  4. Ooooh! I know an answer: Botox and a face lift! Plaster a permanent smile, that will eventually droop back down because of stretchy skin... ok, scratch that idea... but I tried right?