When I started thinking about this blog I knew I was going to be opening a can of worms. How do you talk about epilepsy? It can be a very emotive topic and I have seen many arguments break out over the years in forums and support groups because of terminology and phrases used. So I decided to do a bit of research for myself.
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Chris, Two years ago today we stood infront of our friends & family and took our marriage vows… “For better for worse… in sickness and in health” little did we know that the ‘in sickness’ would come sooner than we ever knew. 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. 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.
Bringing Noah into the world
So when I wrote my blog about the birth plan I already knew I was going in to be induced the following day. A decision has been made between myself and my team all round that I was getting too tired and epilepsy was so unpredictable that baby would be better outside of me at the first chance possible than me carrying to 40 weeks. The next three blogs will cover labour and birth, aftercare in the hospital and then our first week at home. 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. Epilepsy affects all
In keeping with the theme that epilepsy affects whole families and not just the person with epilepsy, and I think it is fair to say this trimester has taken its toll on Chris too. This is the first of a two part entry covering the second trimester, lining up with my entries as much as he could. Epilepsy debate I sat down to watch this with Faye and it took us a while to go through it as she was taking notes the whole way through it. I was really pleased that epilepsy was getting some exposure. My first surprise is how much the local governments were failing to meet NICE guidelines, and the variations in care depending on where in the country you were. Living with Epilepsy
This post is just going to be a general overview of what it is like to live with uncontrolled epilepsy, and to try and give you some insight into what it is like for those around me. I know people have it worse than me, then some have it better than me, this is just a snapshot of our life. The two weeks that have followed the TC have been two of the hardest of my life, because of the epilepsy, pregnancy sickness and because of things that have happened to my family. In this blog I have always tried to find the balance between being honest and respecting people’s privacy, and in the interest of their privacy I won’t go into detail, but it has been an incredibly hard time for everybody. There have been a few positives such as the meeting I was asked to attend as Patient Representative (blog post to follow shortly) and also being asked to cover the Young Epilepsy Awards as a writer, and I am clinging to these in my weaker moments. |
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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