Living with Ramsay Hunt Syndrome
Hello, I’m Nicoya and a year and a half ago I developed Ramsay Hunt Syndrome. I’m hoping that sharing my story will help to spread awareness of this rare condition. Before Ramsay Hunt Syndrome, I was a perfectly healthy mum of 3 and a 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. Ramsay Hunt syndrome (RHS) is a complication of shingles that affects the facial nerve. Facial Palsy UK has some great information on RHS which you can access here. For me, it has been a very slow recovery so far. I have been told that my facial paralysis will probably never fully recover, although, I have regained some functionality. I can now move my eyebrow and I nearly blink! I’m hoping that it’ll continue to do so, just so that I can drink coffee straight from a mug again, as I still haven’t got used to drinking it through a straw. Unfortunately, I cannot go out on my own anywhere due to my lack of balance, but again, I’m hoping that this will continue to improve. We 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 write a blog on my Instagram about my progress, which is like a bit of therapy. At first, I started writing it as a place for my peers to see me, whilst without having to see anyone. But now, it’s helped to build my confidence to be seen. It’s heartwarming to spread awareness of RHS and my disability, whilst celebrating my little victories with everyone. To show that facial differences are beautiful and you shouldn’t feel fear about being seen. For being yourself. 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. But It’s a learning journey. Learning to embrace the “new me”. I definitely feel I am growing as a person because of RHS. Pictures of me: 2 weeks before (with my son), 1 month in (with long hair), and now 9 months in with RHS (striped shirt).