5 Year dizzy-deaf-iversary
Five years ago today, my life was completely altered by losing my music-adoring, balance-giving, communication-enabling, eyesight-stabilizing ears.
I appreciate it’s been ages since I’ve written and that’s good on one hand because I’ve been immersing myself in love, life and work. It’s also to some extent that I didn’t want to keep writing blogs about how difficult life is when one is dizzy-deafened. It’s on those difficult days that I’m most called to write and you’d all get terribly bored hearing the same complaints from me that people don’t speak up and there are not enough facilities, poor me etc.
Through 2018 and 2019 my hearing was up down up down down down up all year. I didn’t want to worry those of you with hearing loss that this might happen to you. I didn’t want to regurgitate my grief stricken and alone terror all over the place so I sat it out quietly by myself. I tried steroids. I tried injections. At some point I just said f*** it. The stress of navigating the hospital system to try and get help is just plain stressful. The last injection I had to my ear has made my tinnitus worse so that now the sounds change as I walk or move which is very annoying. We know that high dose steroids feed viruses and cause long term health problems. They would give me insomnia and affect my mood. So I decided to ditch the medical system as it wasn’t able to help. I still have emergency steroids as a back-up should I experience a really bad and sudden loss.
But generally over the last year, my experience has been that the Medical Medium protocol works and if I stick to it, my hearing stays pretty balanced. Tackling the cause (viral and bacterial infections, nutrient imbalances, toxic overload and emotional difficulties) is a far better way to go about healing the body than blindly throwing drugs at a problem when we don’t even understand how they are helping. So I got more consistent with it (except for the odd week break here and there) and natural healing remains my focus. Overall I know my health, hearing, balance and well-being would be a lot worse was I not following the Medical Medium protocol.
I’m loving the work I do supporting people with chronic health issues and mystery symptoms using the medical medium protocols, systematic kinesiology, nutrition and hypnotherapy. If you want an ally on your journey, do get in touch to see how I might be able to help.
Does it get easier with time being deafened? Not really no. It can still feel like a day to day struggle. Just today I missed my train because I couldn’t hear the announcement, I pretended to understand and be involved in a whole variety of conversations at a conference, I avoided talking to people around me because I didn’t want to struggle hearing anymore, I interrupted conversations because I didn’t know people were even speaking, I was anxious on the central London tubes at rush hour because as people start walking in all directions I find it hard to focus my eyes and balance and I got home with a headache from the noise. These are now my everyday problems.
The good part about being deaf is that you have (with the right technology) permanent Bluetooth headphones in your ears! Now when you can’t hear your social group, you can simply play an audio-book and keep yourself entertained behind the scenes!
So what else have I discovered since I last wrote…
I am no longer a mermaid
I went swimming a few months ago and discovered that if I go under water I almost drown. When you have no internal balance system it is absolutely impossible to orient yourself under the water. Standing close to my boyfriend I thought I’d try an underwater somersault just to be sure (because surely I’m just going forward right? My muscles can feel where I am right?). Wrong. It was terrifying. I went under the water and then had no clue which way up was. It’s a difficult thing to understand when previously you could navigate with eyes closed. Especially as I loved to be underwater before.
My advice is don’t go under the water! Maybe you can do it in a pool with goggles or snorkel but definitely not in the sea. The minute you lose your vision you’re done for.
I’m mourning the loss of playing in water and going in the sea. I think there will probably not be a day when I don’t cry at the beach because I can’t run into the sea like everyone else. This year my biggest wish, apart from full healing, is to get myself into a beautiful calm turquoise sea.
Splash out on quality equipment
Even though technically, my balance system doesn’t know where I am in space, my brain has done an absolutely fabulous job of working with my muscles to adapt. I find that a lot of stuff is possible with the right equipment. I didn’t know until I got there, that this hike was going to be so rocky. Without the poles and the well-gripped waterproof sock-shoes, I would have had to move at a snails pace. Its really important to think about your contact with the ground. Make sure you have good flexible shoes with good grip. These were not even expensive. Vision is also vitally important as anytime you squint because of the sun, you are potentially going to lose your balance or fall, so a baseball hat, hairband and high quality sunglasses are a good idea. Finally, you want to be carrying as little as possible.
Be prepared that if there is moving water that you need to cross to continue your hike, that you may not be able to cross. Make sure you only hike with people who are really understanding of your limitations.
I cycle like a drunk
I discovered, much to my amusement, that it is impossible to hold handlebars straight and I look like I am a paralytic drunk. If you can cycle in a straight line then you must have something in your ears working a bit better than me because I can only ride in hyperactive zig-zags as though I’m trying to kill myself. I had a screaming passenger on my bike so it was doubly funny hearing them say “stop pissing around” as though I had any choice in the matter..
If you want to retain any sort of street cred, my advice is to stay away from bikes altogether or get a 3 wheeler and find a way to make it cool!
Bizarrely, Trampolining is possible!
I have some good news though. That even when you have vestibular failure, and oscillopsia, it is still possible to jump on a trampoline! I was delighted to be able to do some of the fun stuff again.
Have a sense of humour
Shit’s going to happen. Those moments that dreams are made of when the most attractive man you’ve ever seen looks at you whilst you are walking down the street and you smile and sway into a parked car. Or he makes an approach and you squint and say very ladylike “I CAN’T HEAR YOU SPEAK UP I’M A BIT DEAF!”.
You’ve got to try and stay sane so that you can laugh at it. My funny moment of the year was meeting my boyfriend’s friends at a social event last year. I sat down on an inflatable chair and then lost all balance on it and r.o.l.l.e.d. backwards, legs up open wide in the air, skirt up and knickers on display for everyone to see. It was the funniest sight I could ever imagine. “Hi, My name’s Candice and I can’t sit down like a normal person” 🙂
My advice is, don’t sit on inflatables.
So all in all, it is a sad day for me. I moan a hell of a lot about how hard it all is and many days I simply want to be home alone where it is quiet and I don’t have to navigate the world and communication with others. But looking back at the last year, there were many small achievements, successes and joys shared with others to make it all bearable. Keep looking for the small joys and the things you can do and spend your time with people who at least try to understand, are patient and adapt to your new needs.
So now please cheer us all up and tell us your funny deaf-dizzy-imbalance stories!
February 15, 2020 @ 10:56 am
I’m sorry things have been a struggle for you.
High five to you…. You got this!
Here are some of my recent thoughts…
February 15, 2020 @ 1:25 pm
Beautifully written, as I can relate to you and your disability. I have a bilateral profound hearing loss, and also live with oscillopsia. Thank you for sharing – it’s all about education, education, education!
February 16, 2020 @ 7:06 am
Hi I just want to say thank you. I really related to much of your blog… enjoy your humor. Only way I stay sane is to laugh at myself… many health issues, but the hearing loss for me is fairly steady.
I have been wearing hearing aids since 52 so now pushing towards the mid 60’s I should be use to accepting. I have lost over 50% of my hearing… Oh I have plenty of ‘those’ experiences of saying, “Oops, I screwed up once again!” My Osccilopsia is so wild … my head is a camera 24/7 for years so found the 11 week course on Speech Reading was not a magic fix! Super audiologist/teacher, very through & informative, however, when peoples faces are moving about when ever I move my head ever so slightly, reading lips, expressions, etc. becomes a colossal challenge on top of being half deaf… too much for my brain.
I’d come out feeling half buzzed, in a blur, as I road away to a nearby bus stop. Oh, I forgot, I’ve been in need of a power-chair for over 14 yrs. for mobility. I can’t walk without an aid due to a total loss of balance, very severe from BVF both nerves, One of those cases that leaves my doctors puzzled… one of their challenges, but, I avoid them best I can. SO done, over the last 20 yrs. when all this shit started. Long story, so won’t go there. FATIGUE is my middle name!
Once again, I enjoyed reading your blog, Candice… Hope I got your name right. 😉
April 1, 2020 @ 10:08 pm
I am curious, do you think it’s possible the steroids/meds interfered with the Medical Medium protocol? Are you planning on avoiding them and sticking strictly to MM in future?
I have recently developed tinnitus after my chronic fatigue syndrome worsened and am getting started with the MM protocol from reading his books. It’s a problem I would not wish on anyone. Appreciate your updates.
April 2, 2020 @ 11:19 pm
Steroids feed viruses and get stored in the liver which is likely to be already pushed by the viral neurotoxins. So they absolutely can make problems worse in the long run. We really don’t want to be taking them. However desperate times call for desperate measures and sometimes we need something to very quickly inflammation. I did find that the steroids raised my hearing up after significant reductions. That rise wasn’t necessarily maintained for long though. At this stage I plan to avoid them unless I have a very significant and unbearable drop again. I think my first port of call now would be the liver 369 and making sure I keep in track with my day to day protocol, most hearing drops happened when I have slacked. for some People, for example with digestive problems like volition, steroids are the only thing that helps them live a normal life. someone’s this is necessary to be able to even Be able to implement the protocol.
I would be happy to help you on your protocol as I’m a MM inspired practitioner now (candiceluper.com).
April 4, 2020 @ 3:04 am
I just messaged you via your website! 🙂