Sunday, November 2, 2014

Secrets and lies.....well, without the lies

I have been keeping a secret.  For a few years now.  It felt easier to just keep it quiet so I don't have to deal with it, and for the most part I HAVE kept it quiet.  But my secret reveals itself from time to time and what began as a secret that only Anthony knew about has expanded to a few more people, and as of late even more.  

I don't like to talk about it or tell people because I am sick of dealing with things like this.  I want to get on with life and already my back makes that difficult.  I want to be as 'normal' as possible and not have extra things to worry about.  I don't want my health to define me more than it already does.

But for a while now, I have been having seizures.  I didn't know they were seizures at first because they aren't the convulsion type (grand mal seizures).  At first, I actually thought I might be going crazy and having panic attacks, even though I wasn't feeling panicked at the time.  

It starts with a weirdly intense de javu feeling followed by an overwhelming sense of dread in the pit if my stomach.  For a few minutes after this, I feel like I'm trapped in my own head terrified.  I can't tell you what is going on around me during this time.  I'm conscious, but in my own world and kind of shut down.  It feels like I'm slipping away and it's scary.  Then as I come out of it, I'm very sweaty and often have a throbbing headache and nausea for a while after.  It makes my muscles and entire body so tired I feel like I could sleep for days.

The de javu is usually my warning so I can sit down or stop what I am doing.  I felt that as long as I had this warning, it was fairly safe.  

A few months ago, I was preparing a lesson.  I had one of my seizures and couldn't remember any of the lesson I had prepared.  Aside from being annoying, it wasn't too big of a deal.  But then a couple of weeks after that, I came to at about 10:30am on a Sunday morning very confused.  I had no idea what day or month it was.  I had no memory of that morning or the entire day before.  Anthony said I had a seizure in the shower but took longer to come around so he walked me to our bed.  I now remember most of the day prior, but still none of the morning before coming to at 10:30am - it is still as if those 4 hours never happened, like I went to bed the night before and woke at 10:30am the next morning.

For a long time Anthony has been telling me I need to see a doctor about it, but I can be very stubborn and didn't want to.  I promised him that if it progressed at all, I would make an appointment though.  I know it probably wasn't very fair to not let him tell anyone something that was worrying him, but I wasn't ready to deal with it yet.

I know I have buried my head in the sand long enough and need to be sensible so I saw my GP and had to get an EEG and MRI done.  This week I saw a Neurologist who suspects Temporal Lobe Epilepsy, but isn't 100% certain yet without specific tests related to the Temporal Lobe.  He said it's progressed to a point I am having a high number of seizures now so it needs to be addressed.  Nothing too dramatic hopefully, just extra doctors to see and medications to take I imagine.

So there you have it - no more secrets.  I know I hold my cards close to my chest, but my blog is where I say things how I really feel, perhaps things I wouldn't tell people in a casual conversation that we have when I see you. This is my journal though, my only journal, so it's all here.


  1. We love you Jo. You will never be defined by your illness. Just by your incredibly generous spirit and by the light you bring into a room. Our prayers are with you as well as anything else that you need

  2. I've never been one to suffer in silence for too long but I do understand about the tiresomness of dealing with yet another thing...glad you have shared this with helps in getting a more realistic view on the human condition and spirit...always one day at a you xx