Not a bad mum, just a bad day

Today was simply one of those mornings where I woke up, and just didn't feel so great. My one year old (haven't mentioned her yet) and I had lots of cuddles, stories, beebies and snacks. Luckily she was pretty good and happy to play with her baby doll alone, so I could let my body do what it needed to; relax. I hate it. I hate when I can't give my all. I hate it when I can't be productive. I do like watching her play though. But she must think, 'come on mum?!' Either that or she's just used to it. I was beating myself up a bit this morning. Then i just thought, I'm not a bad mum, it's just a bad day. And I have loads of them. In fact, we all do! I finally got my shizzle together, got dressed, fixed us lunch and now we are about to nap. Ahhhh my bliss. The hour in the day I truly long for. I can close my eyes, think about nothing, and I know almost certainly that after that hour or so I'll feel so transformed that I'll be able to get through the afternoon. 

I haven't posted in a while as we've been busy with the new house, and well, life. But everytime i receive a message of encouragement, or a comment saying that I've touched one of you in some small way, I feel pushed to carry on.

I have been watching the BBC series, 'The doctor who gave up drugs'. I love alternative medicine. I would do anything to take away some of my pain. He spoke about how swimming in cold water treats depression, because of the huge rush of endorphins released. He also showed a woman suffering with chronic pain taking up Kung fu to relax her muscles. Maybe I should try it?! The thing is, while I love all of this, I exercise regularly, I try to eat clean, I take my vitamins, have had massage therapy, reflexology, physio, hypnotherapy and recently tried acupuncture, who am I kidding; as much as I resent them, I need those drugs. While they make my days torture, where would I be without them? Probably not writing this blog, that's for sure.

It still amazes me how powerful just a few mg's of this magic powder can be. How can a few little particles change and control the entire pattern of the human body? It's scary to me. It's scary when I think about my crappy life span. Scary when I think how contaminated I am, and that my body can't survive without them.

So, after the abandonment treatment I spoke about last time, i was handed over from Oxford's neurology department, to The National Epilepsy Society (NES) based in Queen's Sqaure in London. There's also a centre in Chalfont which I attend every few months. It was such a blessing after having bad treatment to receive an incredible new doctor. My Doctor is the most amazing Doctor in the world. Good looking, incredible bed side manner, well spoken, genius. Me and my mum are still slightly in love with him. (Sorry Luke, sorry Dad) hope he can't find my blog, secrets out! Anyway, he wanted me to stay in the Epilepsy centre for a couple of weeks for more specialised EEG's; great, more EEG's.

The epilepsy Centre really wasn't a nice place to be for me, Its the kind of place where you really feel labelled. They tried to make it really communal and homely, and un-clinical. Kind of retirement home esque. It may sound nice to you, but I just did not fancy attending epilepsy anonymous, or this strange youth club they were trying to create. I really didn't have the right attitude to surround myself with others who were in fact the same, if not worse off than me. I wanted to run away from it. I hadn't come to terms with the fact that it was part of me. Most people also had other conditions too, many were in wheelchairs, so when I saw them, i thought wow, is that my future??? It sounds so mean, but that really was how I felt. At this time I was having loadssss of seizures, so they put me on Lorazapam (a depressant) and it really affected me. I wouldn’t talk to people, I was scared of the other patients – mainly because their disability was so apparent, they all wore helmets or walked or talked with difficulty. I didn’t want to be categorized as ‘one of them’, another ‘epileptic’. But I was living in the home just as they were. I was so unnecessarily rude to the nurse and doctors; I didn’t eat – Incredibly out of character. I remember feeling like I was in a dark place and I couldn't come out. Everyone who tried to make an effort with me was just irritating and I just wanted to cry ALL the time. My life was the worst and I had no perspective on the world and general suffering. It was all very selfish but It was almost out of my hands. Everytime I take this drug it transforms me and makes me feel so very down. Once again, how can a tiny tablet control a person so much?

Back to now, thank goodness, I'm on a jollier cocktail of drugs. They still give killer side effects but I don't have to suffer with that feeling of darkness... And I'm pretty happy! I want to talk about last Sunday; I taught a lesson in church to the women, about how we can be 'nurturers' to ourselves and others. I'm pretty sure I get the most out of any lesson I teach, not sure anyone else does! It's a nice opportunity to learn and reflect. I was talking about how I got over my surgery by nurturing others. 5 years ago, after my operation, I went on a course with my mum and we became Barnado's volunteers, to help struggling mothers, and families. I was too sick to work, and I didn't really know what I wanted to do with my life. Pre op, lots of my hopes and dreams were pinned on the op working and me getting better and being able to travel, drive, go to uni or work like everyone else my age was. But obviously it wasn't to be so I had to form plan B. So in the meantime, for a few hours every week, maybe in the afternoon (so I could lie in), or in the morning (and then I'd come back for a nap), I would go and sit with these women who were really struggling. Women who were being abused. Women who were alone. Women who had children with special needs and were taught in their culture that this was a curse from God. One woman had newborn triplets and a husband overseas. Some needed a hand, some needed emotional support, most of them just needed a friend. The thing about this experience was it put everything into perspective for me; it made me realise how everyone has something going on... Losing myself through helping others made me realise i am not fighting this battle alone. Over the last few weeks, I have been enjoying chatting with people following my story on social media. I like the fact that I can talk about my epielspy, to anyone now. I don't mind wearing a bracelet that says that I have epielspy, I don't mind it being part of who I am. I like that I have changed in this way. It's amazing to hear stories from other #epilepticmoms please keep sending them to me.

Baby girl is still chatting in her cot, still not asleep after all that ramble...! Better go and make this nap happen x