Today is the day…

So today….it is very close to the 3 year anniversary of the day I finally left the hospital prison I had been in for so long. Today I read about the death of someone from NMDAR encephalitis, the illness I too suffered, someone I didn’t know but was connected to through the illness and an amazing support group on facebook. It made me angry..this is a time of year for me when emotions come rushing up to the surface and what I experienced is never far from my mind. I have talked about the illness on Facebook and toyed with the idea of setting up a website to raise awareness in the uk but due to time restraints I have not managed to progress this as I would have liked. Today I thought…I want to tell this story, I want to share how it really felt to have a brain splintering and melting. I have spent the day wondering what my purpose in doing this would be? There is no doubt that there would be a therapeutic element for me but the main thing is this…in all the conversations I have had with people who have had the same illness or their family members, I am yet to come across another person who remembers, in vivid detail, what it was like in the critical stages of the disease. Most people report huge gaps in memory..not me. I remember everything. There is a 2 week point, when I was at my worst, that is very hazy, but aside from that, it is all there in crazy technicolor. So why share that? I don’t know is the answer…because I want to? Maybe it might help someone along the way, maybe it might help a family member understand? Do I need a reason?

 

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3 thoughts on “Today is the day…

  1. I’m glad you shared, Sophie, because your story has given me strength and inspiration. You write so beautifully. My twin sister was recently diagnosed. It’s been an experience that sent my family into crisis, most probably like most families. Sometimes when I feel like curling up into a ball, I draw strength from reading things like your blog or visiting the Facebook support group. Thank you for sharing. It means a lot.

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    • Hi Ronnie. Thank you so much for your comment. I’m so glad it has given you some strength, I wasn’t sure how it would feel for people who still have someone going through it. I send you, your sister and your family all my love and prayers, don’t give up hope xxxxxxxxx

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  2. Thank you. I was diagnosed in December 2012 and remember hardly any of my hospital experience. I’ve wanted to understand more of what happened and I think this will help. I’m sorry for all you went through. You are so brave. I feel like I want to remember it all but that seems terrifying at the same time. I know this has to be hard and I really appreciate that you’re willing to do this.

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