One of the positives that come following that awful day was Faye had been nominated for a Young Epilepsy award. I think focusing on going to the awards kept Faye sane and gave her something to focus on. It was an amazing night and the stories were so inspirational and it was good to hear others experiences. I was so proud of her for being nominated and then short listed, and although I was disappointed for her that she didn’t win she will always be a winner in my eyes and my champion.
Another positive from that night was that Faye got to meet Dai Green, all thanks to me going to find him and bringing him over to Faye. He was a very down to earth quiet guy, the impression I got was that he found it weird he was there as a celebrity and seem bemused by the attention. He was an inspiration to Faye when she thought about taking up running long distances and I know she was chuffed to meet him. I know Faye was happy to have met him and this in turn made me happy seeing her smile after a tough few weeks.
BUT… after a really good night it all caught up with Faye and she was really ill in the middle of the night, she couldn’t even have one night out without being ill and I really felt for her.
I also had my own recognition that week; Epilepsy Research contacted Faye asking if they could award me with Inspirational blog post for my contribution to Faye’s blog. I was chuffed they thought of me and it was brilliant to be acknowledged but I didn’t do the entry for that reason but I was really pleased they recognised my efforts to raise awareness.
Empire Study Meeting
Faye was asked along as a patient representative to meet with the empire team. She was excited as hell and I was really happy and proud of her because it showed that people took her blog seriously. It was also her first chance to use her new laptop that I had gotten her as a birthday present, which she totally geeked out at!
Faye’s neurology/obstetrician appointment came whilst I was in Vegas, I wasn’t happy about this but knew it couldn’t be moved, and I trusted her neurologist to do what is best by her.
I was surprised that they were altering the Keppra dose as the last month had been stressful and I thought they may have given it a chance to work.
It wasn’t nice to hear that Faye had the lowest lamotrigine levels of anyone they had treated and her epilepsy being described as a complex case, it really hit home how rough we were having it. How low her drug levels are, are just showing how tough pregnancy has been on her body and brain.
Faye talked about the test they wanted to run, I wasn’t keen on the idea of having her in hospital for the day trying to create activity. I knew they wouldn’t put her in any harm but it made me nervous. To me it seemed like they were doing this just to prove what we already knew, and that by the time we had baby it would have no use as they were sure it would return to how it was. I also don’t like idea of Faye being wired up at home, not being able to move about as I knew how much this would stress her out. Faye was open about being hesitant – and I take any lead from Faye where her epilepsy is concerned and if she didn’t want to go ahead with it then I would support her.
A few weeks ago I was off to Vegas on my best friends stag do, I was worried about leaving Faye but knew she was in Alexs capable hands, and that Holly would also be down for a few days to help too. I was worried that something would happen whilst I was away but thankfully nothing did.
Going forward I still have concerns about Faye and I’m praying that nothing else happens, and if it does I can only hope that no damage comes to Faye or baby. The fact the neurology team have stopped the Clobazam and introduced Keppra has pleased me, and although it is making Faye tired there had been a marked improvement at the end of the second trimester, Faye has been having less absences, minus grief due to a bereavement. However even when her epilepsy was controlled something like that would always trigger the epilepsy.
The second trimester has been so hard for various reasons, events in our personal life have taken their toll on us both, and to a large degree has meant that we have closed ranks and just been focused on ourselves and baby, everyone else falling to the wayside. I know Faye has limited a lot who she has seen. She hasn’t been herself at all and the only thing keeping us strong is the baby. I also think that so often people forget that everything that has happened to Faye over this trimester has also had an impact on me, so often that Dad-to-be is forgotten in both pregnancy and epilepsy. It has meant a lot has been put into perspective and things that may have mattered before just don’t. I can only hope that the third and final trimester is easier on all three of us.
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.