Slow

Image

Yesterday was a pajama day.  I didn’t make my kids get dressed and neither did I.  I was struggling simply to be all day.  I felt slow like I was moving underwater.  I always worry/assume that I’ve had a seizure when I feel that way.  I didn’t feel that way the day before.  I took my daily nap, and I usually feel refreshed.  Yesterday I still felt extra tired.  If there was a color for the day, it would be the color of old, cold bathwater after two or three little kids had been washed in it: tired and gray.

The “I Don’t Cares” took up residence in my brain. I should do this… I don’t care.  I shouldn’t do that…  I don’t care.  I need to write… I don’t care.  I need to do laundry…  I don’t care.  I need to do dishes…  I don’t care.  It took all of my energy just to feed my kids.  That’s the only thing I can’t say I don’t care to.

I always assume it is seizure related when I feel so slow and low.  Seizures make me tired.  Seizures make me sad.  So, when I am extra tired or extra sad, I fear that I’ve had a seizure.  I never know if I’ve had a seizure in my sleep.  Nocturnal seizures are like a thief in the night that steals my sleep.  Are my nightmares seizures too?  I would say yes, they could be.  It is plausible.  No-one knows what happens in the dead of night.

I ran my tongue over my teeth to check and see if I bit it in the middle of the night.  I stuck out my tongue and looked at it in the mirror.  I have scars on my tongue from all the hundreds of times I’ve bitten it during seizures.  I even bit my tongue while I was simply talking the day before.  I was in the middle of saying something when I lost control of my tongue and chomped down on it.  It could have been humorous except it hurt!  It was probably just another symptom of my seizure meds or a result of a seizure.

My words do not always come out right.  My kids laugh at me all the time.  I say thing backwards, name colors wrong, stop in the middle of sentences.  I always have to ask, “What did I say?”  It made perfect sense in my mind before I started talking.  The signals just got crossed somewhere on the way to my mouth.  I didn’t used to be this way.  Once, I didn’t call yellow pink.

I couldn’t tell if my tongue is sore from that bite or from a seizure bite.  Your guess is as good as my own.  I have to be told that I’ve had a seizure most of the time.  The small ones only I know about.  Simple partial seizures are basically just really bad feelings.  Nobody can tell if my consciousness isn’t altered.  But when it is, I’ll need someone to tell me.   I hate it when I wake up and someone tells me, “You’ve had a seizure.”  That’s pretty much the worst thing.  I never want to hear it.  I never want to believe it.

After I have a seizure I often ask my husband, “How do you know?”  It’s like Seizure CSI: I need all the evidence first.  What are all of the circumstances under which the seizure/crime is alleged to have occurred?  I am innocent and seizure-free until proven guilty.  I always think, “Just a second ago I was…”  But it turns out, that was about twenty minutes ago.  It’s frightening to know that there is so much time that is just gone.  It’s like I’m not even living in this world.  I don’t even know that I’ve lost time.  When my husband or my kids tell me what I’ve done and said, I am always shocked.  It is illogical.  I should be able to remember things that just happened.  But I don’t.  I can’t.

When I was much younger (a tween before tween was a word), I read a book about the Bermuda Triangle and out- of-body experiences and other benign occult myths and mystery.  I wanted desperately to see a ghost or astral-project.  I remember lying in bed, with my head pointed to the magnetic north pole, trying to relax enough to float away.  I thought wanted to experience an out-of-body experience.  How painfully ironic!!  That’s what I was doing all along.  I was out of my body, out of my mind, and beyond the fringes of memory.  And it is NOT fun.

Advertisements

14 Comments

Filed under Living w/ Epilepsy

14 responses to “Slow

  1. A Critic

    Excellent post.

    “I was struggling simply to be all day. ”

    I spent almost all of the last decade feeling like that.

  2. Karen R. Morton

    Wow..I thought my life with epilepsy was bad..I felt the same way never seem to can explain to the doctors what its like before my seizure occur its like they look at you like your not making sense.
    I started out late in life with getting my life on track and trying to accomplish my dreams in life, I’m still achieving all my goals and dreams, praying each day a seizure will not happen to stop me. I’m now on medication and no seizures. But I know not seizure free though, but I’m keeping my head up and not letting this control my mind, heart, and soul.
    I will be praying for you this is a beautiful story you wrote keep achieving your dreams and it seems its your writing.

  3. JD

    While reading this I felt like it was something that I wrote. This is exactly how I feel, that tired feeling, loss of words, I throw things out, even money! @Karen, I have so much trouble keeping my head up and not letting it control my mind and heart. I often feel like screaming “help” out loud.
    It is an excellent post, best wishes to all.

  4. Super post Karen, there must be something in the air this week. Thinking of tongues, I don’t bite mine, but words are sometimes a bit slow to find and need some special care and attention in order to come out at all. Odd really. Anyway, I hope you have been able to rest and catch up on robbed time. Take care, catch you next post.
    @antepilepsyblog

  5. Assuming you’ve had a seizure when you’re feeling low, checking your tongue, asking witnesses how they “knew” it was a seizure…These are all things I do…regularly. (See my recent post: http://wp.me/p3x9Eh-3P)
    Thank you for taking the time and valuable energy to write this. Just as you’ve commented on my blog, I can say the same to you: “It’s good to know I’m not the only one.”

  6. Reading your beautifully written posts about what it’s like to live with this just about flattened me. I’ve tried hard to understand what seizures and the aftermath and the possibility of the next one are like for my daughter. After reading your writing I can see I hadn’t been setting aside my own sadness, fears, and frustrations enough to appreciate just how difficult things are for her. Thank you for opening my eyes.

  7. Thank you for reading! Yes, writing is my dream. And it is the one of the only things I can do around my seizures and in my PJs. It might be harder for us to reach our dreams when we flit in and out of consciousness, but we can do it! Later is better than not at all!!

  8. Thank you for reading! It is so great to know that people understand what I need to say. Out of the shadows and into the light! May we all feel better!

  9. Thank you! I am so glad to hear that my writing has helped you understand what your daughter is going through. That *IS* my goal. I found it easier (still very hard) but easier once I accepted that my seizures aren’t some horrible, traumatic event; they are terrible but a bit more routine. If that makes sense to you. Each one is terrible, but it’s less terrible once you just accept that it will probably happen again.

  10. Thank you! I felt much better the next day. Writing really helps me stay focused. If I can write for 5 minutes a day, I am proud of myself! Thanks! Many more posts to come!
    Kathryn

  11. Thanks! I’m glad we found each other’s blogs. 😉

  12. Debbie Crawshaw

    Thank you so much for this post.I was Diagnosed TL epilepsy 4 weeks ago after my 1st gran mal put me in hospital for two weeks. Had multiple daily seizures since. Im on 1000g keppra twice daily at the moment. Docs just trying to “control” me at the moment, whatever that means 😦 you are the first person that has made sense since all this started. My life is upside down just now, driving was a big blow but also dont know when I can go back to work, the hospital occupational health nurse just gave me benefit leaflets! Never claimed anything in my life and I’m not about to start now. Thank you again

  13. Debbie, I am so happy to hear that my story has helped you. I felt very alone the first months that I was diagnosed. I’m glad that my story helped you in this scary time. It does get easier. I hope you find seizure control. Thank you! KT

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s