Dear Keppra

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30, 2016. Follow along!

When you were first mentioned to me many years ago a quick google revealed your true colours, your suicidal tendencies, the rage you inflicted upon people and fatigue so horrific I wouldn’t be able to pull myself out of bed in the morning.  I didn’t want to know you if that was how you treated people.

I would continue on with my good friend lamotrigine, I had known her for eight years, she had helped me, reduced my big seizures from one a month to one a year, I could live with that.  She wasn’t too bad, if anything she had mellowed me, made me feel more in control of my mood or maybe it was growing up, becoming an adult, I was 19 when I met her.  Anyway she seemed safe and I had changed my life to incorporate those out of the blue seizures once a year or so, life plodded on.

But then lamotrigine seemed to abandon me, two big seizures in three months and more focals in between.  I was lost, my safety net gone, eight years she’d stuck by me, eight years she’d brought a bit more control in my life and now what she just left me. Anxiety was taking over, anxiety for the future, anxiety of seizures, anxiety of my own safety.

And amongst all this anxiety your name was mentioned again, Keppra is your best choice now they said.  But why would I want to start hanging around with a suicidal, energy draining, maniac when life already seemed so out of control again and I had my little girl to think about now too. But there didn’t seem much other choice.

And so you entered my life, at first I was exhausted you literally drained all the energy from me, I would sleep all the time.  Then as lamotrigine left the scene completely along with her mellowing nature I felt you pushing my buttons, making me angry, making me sad. It was tough, I hated you to begin with, I am not going to lie.

But then after six months of putting up with you I realised something, I hadn’t actually had any big seizures since I met you and the small ones were so reduced… that was weird… I had come to accept I would never be completely seizure free, now suddenly you introduced me to a new feeling… hope… it was weak and I tried to push it back but it was definitely there, a glimmer of hope for a seizure free future.

But if this relationship was going to work out something needed to change… I couldn’t be this tired all the time and my family didn’t deserve me snapping at them every five minutes because you were pushing my buttons.  I needed to find ways to live with you.

Someone suggest vitamin B6 so I gave that a go, it seemed to help a little bit… but I needed more. While running when exhausted seemed counterproductive and a little risky as that was how my seizures had started I decided to try. If nothing else it would test whether you my new ‘friend’ that had been thrown into my life was really worth all this effort or was it just coincidence.

The running really seemed to be helping, I was less tired and more in control of my mood, I also felt more alive, less mellow… it meant I could feel the highs as well as the lows so maybe you weren’t so bad after all. 

Then I found out I was pregnant, the running had to stop, it wasn’t worth pushing myself and having a seizure and I didn’t want to take the vitamin B6 while I was pregnant either. So I was mixing you Keppra with pregnancy hormones and all the anxiety from my last pregnancy, I was a mess.  I needed to find a new way to cope and that was when mindfulness walked in.  Mindfulness was that beautiful friend that everyone was talking about but who was so quiet no one could be bothered to actually take the time to really get to know her.

But in my desperation when you Keppra were pushing my buttons and I couldn’t turn to running or vitamins it was then I took the time to get to know mindfulness and she made me look at life completely differently.  She showed me that while my thoughts maybe fluid with ups and downs, maybe partially controlled by you Keppra, there are ways for me to stay in control of them.

Keppra, you controlled my seizures through pregnancy, through the ups and downs of all those hormone changes, lamotrigine didn’t have that strength.  You kept me and my little boy safe and allowed me to have the birth experience I wanted this time round not led by the doctors, led by me, for that I am eternally grateful. Yesterday that baby I carried for nine months turned one, he is healthy and happy and doesn’t appear to have any problems, I can’t thank you enough.

You have been part of my life for three years now. It’s not been an easy relationship, we haven’t always seen eye-to-eye, and I have had to adapt life to live with you, with a little help from mindfulness. You are one strong minded friend that’s for sure, and I call you a friend now… for you have opened up a world of opportunities, allowing me to drive again, run marathons and just slowly regain my confidence.

I feel blessed to have you as a friend, to have these opportunities in life again. But I am scared too, you are pushing me to do so much more with my life, life isn’t just plodding along like it did with lamotrigine.  But what if you abandon me like lamotrigine did and all the seizures and anxiety returns, what then?  That’s when mindfulness steps in, in all her beauty and reminds me to focus on my breathing, on the sunshine streaming through the window, on the sound of my fingers typing on the keys, on the here and now and suddenly those worries drift away and I am left content in the present.

Clair

NEXT UP: Be sure to check out the post tomorrow by Jessica E on http://livingwellwithepilepsy.com For the full schedule of bloggers visit the Participants gallery.