So Monday morning rather than being at Baby Sensory with my boy I was once again sat at the hospital waiting to see my neurology team. Firstly I have to say well done to Epilepsy Society every time I have been to a neurology clinic they have had a volunteer there handing out leaflets and answering questions for people. Whilst watching the others around me I started thinking about my own appointment. To be honest it hadn’t crossed my mind too much until the weekend. Why? Maybe because we were starting to have better days, or that the thing bothering me most still were the side effects. Whatever the reason as long as the epilepsy/side effects weren’t bothering Noahs life I was living in a happy bubble. We have also been crazily busy this month and on that note I have to apologise to those of you that are waiting for me to reply to your emails/messages about the blog – I haven’t forgotten – just takes me a bit longer than it used to!
Shockingly I was quite early for the appointment and in turn I then got seen early (never happens!). My appointment was with my epilepsy nurse who I’ve grown fairly fond of over the last year, despite vowing not to as I still hated that my last nurse had left. Firstly as we headed for the room he told me that he had someone sat in with him from a drugs company and she was there to see how they run things…Now at this point I kind of wish I had been listening – I wasn’t which was a pain in the backside as I didn’t really have a clue what she was doing, and I probably could have asked her a few questions myself! That will teach me to pay attention.
We went through the usual. I complained about side effects, went through how often I was having seizures/activity – working out if that was better than before, discussing if I was ok with Noah, sleep deprivation. I then had to be honest both with him (and you) since having Noah I am awful at remembering to take my meds. I don’t mean to be and I try so hard, and I have tried every trick in the book. I put them infront of the kettle (I’m a tea addict), set alarms (I silence it and then get distracted), Chris sets alarms (same thing or he isn’t home), before bed (so tired I forget). It means my meds are taken at all sorts of hours – never good. We discussed that this could mean that I am taking the doses too closely togetherwhich could be making the side effects worse (not causing them). We also had a chat about a dose reduction again as I was keen to push it back to what I was pre Noah. They as ever were cautious because I still didn’t have full control, but he was happy to speed up the reduction because of the side effects as long as I agreed to stop if seizures increased or got worse. I, of course, agreed. So now I am reducing my dose from 275mg/300mg down to 250mg/250mg. It will be done slowly with a reduction every two weeks.
Moving with the times
After all of that he told me about an app that my consultant had been heavily involved in and asked if I would be willing to give it a go. I have to download the app, they will phone me next week handing me a log in and away we go. The app allows me to log side effects, seizures and apparently will remind me to take my meds and log it when I have. The thing that I think is a brilliant idea is that it will download all of this information straight to my team. So time will be freed up at appointments as all the information will be infront of them. I’m excited about this!
I left with an appointment to see the epilepsy nutse in 4 months and a date to see my Consultant in July. My life is starting to be my own again.
Chris turns 30!!
The epilepsy played ball at the start of the month just in time for us to celebrate Chris 30th Birthday!! We celebrated with a 90s themed fancy dress party. I again have to say thank you to Alex and Holly for being my right hand women in helping me get everything ready! Everyone had a brilliant night, most importantly Chris :-) We then had a lovely chilled day on his actual birthday before having take away with some friends and family.
UK Blog Awards 2016
So I have spent a lot of the last two weeks promoting my blog but not actually writing! That is all because I have been nominated for a UK BLOG AWARD!!!! Voting closes Monday 25th January at 21:00. Pretty please vote for me! You can vote for me twice per day. It would mean so much to me.
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.