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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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. 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. Invitation
One afternoon I was spending the day doing not very much and an email landed in my inbox from Epilepsy Action, “The EMPIRE team at Queen Mary University of London have recently completed a Delphi survey, Defining core outcomes for clinical trials in pregnant women with epilepsy (E-core). As the next step, they are going to hold a consensus meeting between different stakeholders, to finalise the results before publishing them. They would like to invite you to attend the meeting as a patient representative, to help them gain more insight from the survey results." #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! Harsh truth
I thought long and hard about writing this post. Namely because I was concerned about peoples reactions as its brutally honest and blunt, I make no apologies for this. This isn't to shame anyone but to highlight some comments made which show the lack of understanding of both epilepsy and epilepsy in pregnancy. Shockingly sometimes the worst comments have come from those closest to those with epilepsy. Did you really just say that? When I asked for peoples experiences I was shocked at how many people came forward and even more shocked at some of the comments. Out of respect for those who have told me of their experiences I have made all posts anonymous: |
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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