Friday, December 31, 2010


As many Lymies feel at one point or another, I feel trapped in my body.  I WANT to get up and help with dishes.  I WANT to bend down and pick up my 9 month old.  I WANT to hold and hug my 3 year old.  But I can't.  There are moments where I want to move that I just plain can't muster the energy to move!  Trapped.

Another time I feel trapped is when I have a "seizure" (I say this loosely because I really don't know what type of seizure I'm having and all I know is that it's Lyme related).  A relative recently asked me to describe the whole "happening" of a recent seizure (I haven't had one like this since the summer...I think the stress of traveling and the holidays overloaded my system and caused a meltdown this time).

Here's how I described it to her:

Well normally my tremors are just on my right side.  My right arm and shoulder really. And if it gets really bad then my head will jerk too.  But that is a once or twice occurrence each week so we don't worry about it.  But the "seizure" thing that happened the other night hasn't happened since the summer, and that is different.  

I could FEEL one was going to come.  Matt was going to put Georgie to bed and before he left, my LEFT hand did a weird thing.  My left side never does anything weird so it confused me.  I had JUST put my antibiotics in my mouth and swallowed them, but they can't kill stuff THAT fast to cause a seizure so we think the seizure was just because of a nervous system overload.  

My left pinky curled up in a grotesque position and just stayed there and my left arm jerked and then my right arm.  So Matt said, "Are you okay?" and I said I thought I was but I was getting this weird "feeling" I get before a big episode.  But it had been so long since I had had a "big one" so I thought maybe I could control it.

So he left the room.  I was sitting on the couch but no one was really "watching" me.  But they could have seen me if they had glanced over from other parts of the room but they were all occupied with dishes and such.

My arms jerked again and then started jerking pretty regularly along with my right leg so I got anxious and I felt like there was an elephant on my chest and my left arm was tingly down to my fingers and weird pains were in my right arm and legs.  So I knew it was going to get bad.  But I didn't have the energy to raise my voice for someone to get Matt.  I figured someone would look over and say, "Are you okay" because I was jerking.  But it just so happened I wasn't as visible to the people in the room as I thought.

THEN it escalated. My heart started beating SOOOOOOOOOO fast and I got SO scared that I couldn't speak and I had a lump in my throat and wanted to cry and yell for help.  And I was jerking REALLY bad.  Both arms and my head.  Finally after like 5 minutes of this Matt walked in and I looked at him and he said, "Do you need your medicine?" worriedly and I burst into tears which is something that happens with each HUGE seizure for some reason.  It's so weird.  It happens every time. I can't talk but I can cry.

So he ran to the other room to get the seizure medicine and then over to me and shoved it in my mouth and just tried to calm me down because that's what you're supposed to do.  But then it takes time for the med to work.  So he just kept saying, "Breathe" and "calm down" but I was hyperventilating and convulsing and jerking uncontrollably.  It was hard to catch my breath and my chest felt heavy. 

I think I convulsed for 20 minutes but for the last 10 I was able to breathe better. So it was just a matter of calming down and waiting for the jerking to stop.  The WHOLE time my eyes were closed and I just WISHED to pass out. It's a weird feeling. You want to pass out so badly and feel like you could at any moment but it never happens.

When the worst was over, all that happened were a few jerks every few seconds and my right leg would shudder violently every minute or so.  So strange.  Matt just stayed there rubbing my hands and stuff and telling me to calm down. I could finally talk but not well, sort of slurry, and I asked for a cold compress on my head. 

When it was over I was so weak I couldn't move.  I just lay there pale and completely still.  Matt offered to move me to bed but I was so afraid to move because I still felt "weird".  So I lay there for 30 minutes stone cold before we finally moved to bed.

Thankful for a God who knows and formed my body and has created it to help me fight this disease.  No matter how trapped I feel, I know that my Creator knows how I feel and is here to give me peace amid anxious moments.

1 comment:

  1. When I'm feeling at my worst, I like to repeat this phrase, "Be peaceful my sweet body, working so hard to support me." Then I feel like I can be helpful to my poor overworked body and proud of it, which makes me feel less helpless and trapped in my body.