Blog 91: I feel funny

​Epilepsy is a funny thing isn't it. You think you have got to grips with it, you think you have it sussed and then it finds a way to remind you you're not in control  - and that is forever the feeling I detest.

26th March 2020 (Purple Day) will mark two years for me, two years since my last tonic clonic seizure. Two years since I last lost consciousness because of a seizure. Two years since I last felt a risk to my boy, two years since I felt a burden and two years since I counted my lucky stars for the friends we can rely on. However lately my own epilepsy has been tapping me on the shoulder, I've tried to ignore it but it won't go away. It's been a subtle shift, one In pretty sure only those in the know will understand. That shift where your body starts telling you something's lurking. Your responses slow, the auras creep up. My little world is suddenly blue tinted. My head that bit fuzzy. I hear myself uttering the words I have used since childhood. ‘I feel funny’. And whilst I tell myself I'm still conscious, I can still care for Noah. Its that reminder of what if. The reminder of what could happen. Now I'm also swim teaching I feel like I have even more to lose.
 
It wasn’t easy to admit to my epilepsy nurse today that the auras were creeping in, I've tried to deny it, tried to pretend I’m just tired, that it didn't happen. Any excuse you can think of, but after 27 years of this condition I know my mind. It still scares me as much as ever. 
 
Im very very fortunate with the care I have. My epilepsy team made sure I was cared for as Mum was dying and they have been a pillar of support ever since. They check in and they check up, I will say it till I’m blue in the face this is why we *need* epilepsy nurses. I honestly thought about leaving my team and moving hospital after Mum's death, but these men were the reason Noah is here happy and safe, so in the end I decided to swallow the anxiety being at the hospital, knowing I am in the best hands. Today I saw my first drug increase in almost 18 months. Boy was that a bitter pill to swallow. It's not that I think I’m ‘better’ , its epilepsy it never goes away. It’s just I was starting to not consider it every day. I’d stop telling people (where relevant) that I have it because it didn’t seem important. However I am now back at that place where I tell people “just incase”. I hate that phrase! It's the one that reminds me of the impact this has. Seizure freedom is a funny thing, I don't think you ever truly feel free, and the further I get from my last seizure the more terrified I am of having one. I remember the dark days after Noah come along, my pregnancy fresh in mind as if it happened yesterday. I never take it for granted.
 
So what's next? I take the increase, I hope I tolerate it, I hope it squashes whatever is trying to get out. I bend and I adapt to life with epilepsy once more, because I refuse to let it win. 

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