The ABCs of Disability – The Letter “S”

This Just In…

Having a chronic illness sucks!  With an “s”.

Having a chronic illness that is invisible really Sucks!

With a “bleeping” big, capital “S”.

I know I’m not saying anything that is earth-shattering.  But there are times when it needs to be said, even if it’s to ourselves.  Even when we’re having a good day.

Having an invisible, chronic illness is like living with a child who has temper tantrums.  Some days the child is really acting up, some days just lying low and a few precious days where everything is all right with the world.

For me, my main problem is vertigo. At 37 years of age I had to start learning to live with, and tolerate, the whims dictated by my inner problem child.   I don’t know when it will strike.  I can do very little to prevent it.

I feel like I’m in a strange, strange limbo.  I read other blogs where people have Meniere’s Disease and I am not on the same level as some of them.  I don’t get the vertigo so bad that I have to lay down for hours or days while throwing up.  My mother had Meniere’s Disease and she would suddenly yell to get the bucket because she would get dizzy and start to throw up.  She started leaving plastic bags in the glove compartment in case she would throw up.  Unless I’m feeling really drained, unbalanced or I’m sick, I can walk the couple of blocks to run an errand.

Yet, it’s bad enough that I can no longer work.  I have to keep my head looking forward as much as possible when I walk (which I now have to do at a slower pace) or sit.  I have to keep my head in my hand a lot of times to keep it still while I sit at my desk and lie down off and on during the day so I don’t get too tired or unbalanced.  I get most of my things online or get one of the people I live with to get me something.  I feel myself become unbalanced when the weather changes.  The weather!  Something else I can’t control.

For me, that’s one of the biggest problems which leads to some of the biggest fears that I’m learning to face.  I, like that temperamental child,  am out of control.   I can’t control my ears, can’t control my balance, have to plan to try to do things on certain days or, plan to try to not do too much if I know I have to go to an appointment.   Even though I try, many days I’m just not successful.   Can’t control this, can’t control that.  Can’t control my life.

Yoda was wrong when he said “Do or do not… there is no try”.   Some days, trying is the best we can do.

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One comment

  1. Thank you so much for the last sentence in your post. Sometimes trying is all you can do.
    And we have to give ourselves a break if we try and we just can’t.
    I understand.
    wendy

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