Hello, my name is Nicoya and I developed Ramsay Hunt Syndrome (RHS) just over a year ago. RHS is a complication of shingles that affects the facial nerve.
I’m hoping that sharing my story will help to spread awareness of this rare condition.
Before my diagnosis, I was a perfectly healthy mum of three and carer to my grandfather. Now, I’m living with right sided facial paralysis, nerve pain, hearing loss, tinnitus, vertigo and balance issues. I also get pain upon hearing loud noises on the affected side.
For me, it has been a very slow journey so far. I have been told that I will probably never fully recover from facial paralysis. Although, I have regained some functionality. I can now move my eyebrow and almost blink! I’m hoping that this progress will continue, just so that I can drink coffee straight from a mug again. I haven’t got used to drinking it through a straw yet.
There are a wonderful community of people out that are going through similar things as you. We will be there to pick you up and support you.
I still unfortunately cannot go out on my own due to my lack of balance, but again, I’m hoping that this will continue to improve. My family and I do all like to have a good laugh that I have had too much wine though, which is always amusing. I like to call myself wonderfully wonky because of my facial palsy and balance issues.
I decided to start blogging on my Instagram about RHS and facial paralysis. I document my facial progression by posting videos and photos. I also talk about the symptoms that have accompanied me with RHS, physically and mentally, and the treatment that I have been receiving.
At first, I started writing it so that I could tell people about what was going on, without having to see anyone. But now, it’s helped to build my confidence to be seen and become more accepting of looking different.
Nicoya has received advice from other people with visible differences online.
A lot of people have contacted me that are going through either the same or similar situations. They are absolutely amazing and always give me great advice and words of wisdom. I feel that I have become a part of a wonderful community that I didn’t know that I’d love to be a part of.
Before I started to talk about my condition, I was afraid of being stared at or judged for being different. Now I find myself posting more photos than I did before. Knowing that so far, I have been met with just love, compassion and support.
It’s heart-warming to spread awareness of RHS, visible differences, and my disability, whilst celebrating my little victories with everyone. Visible differences are beautiful, and no one should fear being seen, or feel afraid to be themselves.
I’m not going to lie, sometimes I like to hide within my four walls, or I don’t feel well enough to see a soul (apart from my wonderful little family). I can spend some days looking back at pictures of my face before the paralysis and long to be the old me. Yearning to be pain free and independent again.
Visible differences are beautiful, and no one should fear being seen, or feel afraid to be themselves.
I know that I am lucky, it could be worse, and there are a lot of people who are in tougher situations than mine, but I know that it’s also okay to feel sad sometimes too. This is a learning journey to embrace the ‘new me’.
If there is anyone who is struggling with self-confidence, their appearance or something similar to me, please remember that different isn’t bad, it’s just different. It’s okay to have wobbly moments, so lean on your family and friends if you need to. There are also support groups out there that can really help, some on social media and ones facilitated by Changing Faces.
There are a wonderful community of people out that are going through similar things as you. We will be there to pick you up and support you.
