Saturday 14th July saw myself and Noah heading down to the Olympic Park for the Women with Epilepsy Picnic in the park. It has been organised by Kim Morley and Epilepsy Action. I was hesitant about going, my old fears of tube stations was niggling and just getting out the house this morning seemed a struggle, but boy was I glad I pushed through.
We arrived to be greeted by fellow blogger and epilepsy Mummy Clair Cobbold (http://becomingamumwithepilepsy.blogspot.com/), who I have known since I was pregnant with Noah, her little boy is a few months younger than Noah, it was lovely to see her. I haven't seen her since last years London Marathon. Noah was a little shy but Riley took him under her wing and he was soon running around. Next was a cuddle with Kim, and introducing her to my boy.Kim is a hero for women and in particular women with epilepsy, she fights so hard for people to be given all information on medication, not just epilepsy medication, and her website (http://www.womenwithepilepsy.co.uk/) is a valuable asset to any women with epilepsy. Soon people were arriving and there was a really lovely atmosphere, the children were playing beautifully together and the adults were chatting.Then along came Torie (https://www.torierobinson.com/), who I feel like I know so well through social media. Again it is the reason I love social media, this lovely lady felt like a friend before we had ever met. Noah fell in love with her instantly, and for me anyone my son loves like that instantly is a good egg in my eyes. Social media has made Clair and Torie friends before we met and even when we don't see each other often.
Whilst the kids were playing we sat down for a group discussion to talk about any issues we may have and offer advice and tips for each other. It was really useful, I learnt a lot, hearing other stories made me feel like I wasn’t alone. We discussed the ketogenic diet, which had been successful for one lady bringing her seizures from 10 a month to 2. We discussed how different cultures sill aren't accepting of epilepsy and what we could try and do to help. I also touched upon how this was becoming an issue with women taking valproate and hiding it from husbands and families and going on to have children with disabilities. We also discussed that although epilepsy awareness had come so far in recent years there was still a very long way to go. It was refreshing to have a chat about issues that cross my mind on a frequent basis. It was also sad to hear stories of those who remained pretty much housebound and we tried our hardest to encourage and reassure them that they could get out and about. As this was all going on people were also stopping by for information and to learn more or share their stories.
In the afternoon I got into a discussion with Kim and others about the effects of medication on our children. There have been a number of us who have discovered that our children have the same or similar issues. We may never know if its the meds but as Kim pointed out that without the data how are any of us ever to make properly informed choices. It did me the world of good to discuss Noahs recent health issues, with the group of women that I had confided in during the early hours of the morning, their support shone through as always.
Whilst there I was also able to pick up the “ My Mummy has epilepsy” book to try and start explaining to Noah what was going on when Mummy was poorly. It was good to get advice from others too on how they explained things to their children, I so often worry about the effect this all has on my darling boy. Chris arrived after night duty just in time for the bike activities, BikeWorks offered a free 30 minute tour of the Olympic park and the chance to try out different bike. Whilst Noah and Chris played on the bikes I took the chance to take advantage of the free massage that was on offer.
The afternoon flew by, it really was so lovely and seeing how much Noah was adored by these ladies really warmed my heart. I caught up with Kim Morley and she had this to say “ It was a privilege to meet up with all the families, by us all getting together it gave us the opportunity of sharing stories and words of wisdom. The bonus was the other families who approached us for information for their loved one. A great day had by all with special thanks to Marie Edgar from Epilepsy Action.”
That's what I take away from today friendship and support, I have known Torie and Clair for a long time, and social media really is such an asset when used in a positive way. It was great to see Kim and hear her words of wisdom as always. As always my purple family never disappoint and I look forward to the next one.
Facebook support group: https://www.facebook.com/groups/739520702798749/
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, 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.