I’m exhausted. Although I’ve been a busy bee creatively, mentally and health-wise, I’m just done. I came across a study in the early hours of the morning, shared on Twitter by Epilepsy Research UK on seasonality in epileptic seizures and I was disappointed to find that as a Black woman, once again, the NHS has let me down.
You can read the article here. The gist of the study was that a significant effect was found between seasonality, vitamin D levels and seizures, which means that Black people with Epilepsy are being let down again.
I’ve come to trust my Epilepsy team. I’ve been with them since 2014, when I first moved to London and grown to trust them.
However, lately I’ve become more and more frustrated with them. I’m feeling dismissed, cast aside – especially because we have such a good relationship, when I raise concerns, it feels like I’m being talked and walked over at times. I feel like they are treating me like a child instead of an adult. Last night I was so wound up after reading this article, I couldn’t sleep, which is detrimental to my Epilepsy, and after talking to my girlfriend I felt like the only solution was to go to another hospital and start afresh.
I’ll walk into the new consultant’s room as an adult
But upon reflection, I realised that wasn’t right! I’ve built up a relationship with the Homerton Epilepsy team. I’m not going to run away. They must look after me.
And I’m a fucking adult!
So I sent my Epilepsy Nurse this email:
Hopefully, I’ll be listened to.
I’ll keep you all informed!