First family holiday
So I’m a week behind on watching Epilepsy & Me due to taking Noah on his first holiday and two weeks behind in publishing this blog as two of our best friends got married this weekend (photos below). We have had an amazing time over the last few weeks and I fall in love with my beautiful boy more every day. He is getting more alert day-by-day, is so curious about the world around him and I am getting big smiles from him, granted normally at 5am when he should be sleeping! On our return from holiday I was eager to sit down and catch up. Young Epilepsy is an amazing charity and do some unbelievable work, and they have been a great support to us throughout my pregnancy (despite me being past the ‘young’ bit of Young Epilepsy), as well as throwing a fabulous evening for the Champions Awards.
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Neurology Appointment
Three weeks after my initial neurology appointment following having Noah I was back again. For the first time in months I went alone. It was a weird feeling but I needed to get out alone and what better place to be heading than to the neurology team! On the whole there had been some improvement with the epilepsy (Noah was just over four weeks old). I had slowed down the decrease because of lack of sleep, I was worried about the effects the decrease would have on me as it is a huge trigger for me, and now more than ever I knew I had to be fit and healthy for Noahs sake. I always knew having a baby would mean sleep deprivation but I was trying my hardest to manage it as best I could. So I went against the doctors suggestions of how quickly to reduce the Lamotrigine, in my case I slowed down the decrease, thinking I knew best. However I was still feeling dizzy and “drunk”, this was where I got a bit of a slapped wrist from the epilepsy nurse. He informed me that I was feeling like this because my hormone levels were dropping and the lamotrigine levels were rising, and I needed to do it at the speed suggested to make sure the levels didn’t get too high. He sent me off for blood tests to check my drug level, I hate blood tests, so last time I won’t do as I’m told. It has taken me a about three weeks to write this, demands of a new-born has meant an entry that I can normally write in half hour has taken me this long, it’s also taken this long because the epilepsy and medication changes have meant things have been a bit hazy and I haven’t always been up to writing. The paragraphs have been written by me as they happened so are in the present tense, when actually they are events that happened weeks ago.
Epilepsy awards
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. I’m sure this blog post was destined to never be posted, and after the last one is pretty tame. My memory of these two appointments is hazy now as I’m trying to cover things that happened the best part of four/five weeks ago and bare in mind this was prior to my epic face plant down the stairs but I shall do my best, so this is a quick summary to bring us up to date. The blogs following this one will cover the aftermath of the TC seizure.
#Epilepsydebate15
This post was going to cover my 20 week scan and foetal echo, but due to a rotten run again with the sickness and subsequently epilepsy (part of which resulted in burns to my hands) I hadn’t got round to putting it together. Instead today I managed to sit through the #epilepsydebate15 in the House of Commons. I tried to keep up and take notes so I could put this forward, and I’m hoping I hit the key points, but due to how rough I feel I apologise if I miss something! Also some of what I have written has been lifted from the debate itself. I have to thank Chris and sky + for their help here, Chris in repeating things for me and sky for allowing me to pause and rewind! |
AuthorMy names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy. Archives
December 2022
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