Friday, 16 August 2013

Opening up about the past ~ finding my diary

Riley is asleep in her little snug on the floor... wow!  It won't last long but I have something I want to share...

Today while I was trying to find my hospital appointment letter (I am useless sometimes!) I found a diary I wrote during the really rough time in my Epilepsy story.

It was in 2010, I was still under my old neurologist who was completely useless (even another consultant said so!) and he was giving me no support and basically leaving all the decisions down to me...  it was the point at which I read about the possibility that the contraceptive pill can increase Lamotrigine levels and my dose was so high I was considering stopping the pill or trying another drug but I wanted advice and my neurologist just left the decisions up to me with no information...

(see next post for information on Lamotrigine and the combined contraceptive pill http://www.becomingamumwithepilepsy.blogspot.co.uk/2013/08/the-combined-pill-and-lamotrigine.html)

It was the time at which I was pushing to be seen by an Epilepsy nurse... I didn't relise how bad I was feeling at that time and how hard I had to work to be seen by someone other than my current neurologist...

I wrote a list of all my worries and I didn't remember how anxious I was after that seizure until I read that.  How because it wasn't during exercise I felt even more like it could happen at anytime, anywhere.  I was struggling with the limitations on my work, the inability to drive and worrying about ever being able to start a family.

It's funny because everytime I have a neurology appointment now I get tearful and  reading that I can see why, I guess I feel much happier and confident most of the time now, I try not to think about what could happen.  But there are moments where things catch up with me, usually when I am tired and reading this diary it was a time when everything got on top of me. 

It goes on to the first appointment I had in London, I felt really guilty (and still do to some extent) being refered to London, I felt like my epilepsy isn't that bad and I was wasting a specialists time and stopping someone else seeing her who needed it more.  I only wanted to see an Epilepsy Nurse, not be referred to such a specialist.  But then I can see that things improved so much, everything about my epilepsy started to make sense and I understood more about it and felt like the specialist was making the decisions more.  I can't thank The National Neuro hospital enough and the specialist who sees me.

Another bit was the beginning of my pregnancy, the bit after the seizure, it made me realise that was a really tough part of my life, I had so many worries, I was so worried about miscarriage especially after the seizure.  I also had all the otheer worries of becoming a mum and then on top of that all the worries of becoming a mum with epilepsy.  Reading back on it, it has made me realise why I am doing all this, my blog, the pregnancy diaries, I hope I can make other womens experiences of becoming a mum with epilepsy a little bit easier.


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