Hi Steemers! I’m Glenn, and I may have only just discovered this crazy, beautiful community, but I have to say that I’m all in!
And I hope to bring a little something different to the table. I don’t write about tech, or popular culture, or travel like a lot of you. I mainly write about illness. Chronic illness to be exact, which is something I haven’t really seen on Steemit yet.
But it’s about a lot more than just being sick. I write stories about overcoming incredible odds. Facing unthinkable circumstances with a straight face and coming out the other side a better and stronger person than you were before. It’s about punching your deepest fears in the throat. And making the most of the hand you’ve been dealt.
Oh yeah, and I hear noises that no one else can hear.
Though it’s probably not what you’re thinking. I’m not Schizophrenic or mentally ill. I’m talking about something much more subtle and far more insidious.
And while you won’t be able to hear the crazy sounds that I can hear, you might just know what it’s like to be me. In fact, I’m willing to bet that most of you have heard something similar.
Ring Ring Go Away:
Ever heard ringing in your ears after a concert or a night out partying? The kind that usually goes away after a couple hours? It’s called Tinnitus. And it probably never bothered you because in small doses it’s not really an issue. But imagine for a second what it might be like if it was three times louder and never went away. It’s not a pretty picture.
Yet for me, and for hundreds of millions of people around the world like me (Tinnitus affects nearly 15% of the general population according to the CDC), the sound never stops and it can drive you completely crazy.
And it’s more than just ringing. I hear high pitched tones, low pitched tones, and whooshing sounds. Others hear clicking, chirping, screeching like nails on a chalkboard, and more. Some hear their heartbeat pulsing in their ears. Some people even hear music.
I’ve lived with this crazy condition for as long as I can remember, but for most of my life, I just thought it was normal. I didn’t even realize that no one else could hear the sounds that I could hear when it was quiet until I was thirteen. It never really bothered me.
But that all changed five years ago when I was diagnosed with another crazy condition called Meniere’s disease.
You probably haven't heard of it. I hadn’t heard of it either. It’s pretty rare. And it’s particularly nasty. It’s not fatal, but there’s no cure and doctors don’t know what causes it. Most people get it later in life. I got it at 24 and had to grow up pretty quickly. Violent vertigo, hearing loss, and Tinnitus will do that to a person.
So for the last few years, I’ve been sharing my stories to inspire people with Meniere’s disease, other balance disorders, chronic illness, and now Tinnitus, too.
(Oh Tinnitus. You’re the only whining noise more annoying than my wife.)
Inspiration:
But I also hope to inspire everyone else. Because behind every chronic illness is just a person trying to find their way in the world.
We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.
You can learn a lot from adversity. But you can also learn a lot from the person who just never gives up. Who wakes up every day and kicks hardship in the balls. There is wisdom to be gained from the hard-won happiness of others.
That’s what I hope to bring to the table, to share with all of you.
Thanks for welcoming me into this awesome community!
More About Me:
I run two websites: Mindovermenieres.com (verification) and RewiringTinnitus.com (verification).
I’ve published a book on Meniere’s disease and have a new book coming out soon on learning to live with Tinnitus!
I'm a volunteer and Ambassador Board Member at the Vestibular Disorders Association (verification halfway down the page).
I’ve been published on notable blogs in the chronic illness space like themighty.com.
You're such a strong person and your story is inspiring. Thank you for sharing :)
Thanks graciah! :)
Welcome to Steemit!
Thanks Eric!
Welcome!..Great post:)
Thanks ! I really appreciate it.
Same affliction here - hearing in my left ear went OUT suddenly in 2008. Not out, but the same ringing and whooshing you describe, all pitches. Horrible. It's never quiet. And I feel like an old woman because I can't hear my children. I am always telling them to talk to me in my good ear (for now I still have one!) Hearing is a gift we take for granted until it's not there. How I wish I could get it back. I will be interested to see what you have discovered.
Everything I've discovered about Tinnitus focuses on habituation. At this point, there really is no reliable way to decrease the volume and there isn't a cure. But you can learn to habituate. Our brains are very good at filtering out meaningless background noise. The problem is that we can't tune out any sounds that imply danger and when Tinnitus is driving you crazy, you are reacting physically and emotionally as if you were in danger. It puts you in continuous state of fight or flight. So to get to the point where it stops bothering you, you have to defuse your negative reaction to the sound. I made a video to explain what worked for me. You can check it out here: http://www.rewiringtinnitus.com/tinnitus-habituation-strategies/
Good to have you sir
Thanks!
i can feel with you ,i have it since April this year, just out of nowhere it starts, its a bit better now, but somedays it makes me nuts. Did you find anything what helps?
Yes I did! I was able to fully habituate to the sound and it doesn't bother me at all anymore. I've made a couple videos breaking everything down. Habituation is such an important concept but most people have a misunderstanding of what exactly it means, so I recommend watching this first: http://www.rewiringtinnitus.com/tinnitus-means-habituate/
Then, check out this video which explains exactly what worked for me: http://www.rewiringtinnitus.com/tinnitus-habituation-strategies/
Thanks, i will watch it
Hi, Glen. Your story is indeed inspiring. I suffered from vertigo several months ago and researched all about it. Meniere's disease is brutal. I had BPVV i think. Anyways I don't have it now. Maybe, it will surf up occasionally in life.
Followed you. Now that you have introduced me to this, I hope I extract some benefit out of this platform. I have contributed with few decent posts on Quora which were appreciated. I wish I do some damage here. See you around.
Hey Dev. Yeah Meniere's disease is rough, though I'm able to manage it really well. BPPV is super common. A few family members have it. Glad it went away for you though. Vertigo in any form is really hard to deal with. I'll keep an eye out for your posts too!
Great post and thank you for creating the post on how to use Steemit, I really appreciated:-)
You're really welcome! I thought my guide might get a bit more action than it did but, oh well. I'm in it for the long haul!
how's over a year for "long haul" sound? New to the platform but already feel more comfortable than expected because of your wise words (and extra dose of inspiration). Thank u!
Sharing is caring ..Good work brother
Okay, you have a new fan. I have a severe case of tinnitus as well; doctors told me it is literally sound generated inside of my head (not busted eardrums, wax buildup, damaged cilia, etc.) I'm going to read some more of your articles because I hope I might find some kind of relief from this insane ringing.
It's a crazy condition, but relief is possible! The most important question is does it bother you, because if the answer is yes, you can rewire your emotional and physical response to the sound. When you habituate it doesn't necessarily go away, I still hear mine (and loudly at times), but it completely stopped bothering me. I hope some of my posts can help you get on the right path! I have a book coming out in the next month or two that describes everything I've done to habituate and structures it into an easy to follow plan! Feel free to shoot me an email if you ever want to chat: [email protected]
Thank you. It's pretty loud, and divides my attention between sounds so it can make it difficult to focus on someone when they're talking. I'll check it out.
Sorry to hear that, i "developed" T this year and i'm still getting used to it.
@mindover, i was reading read guide "steemit for dummie" i must say i find it very interesting and educating on matters of steemit.
love you introductory post also.
thanks
Hi, Glenn!
I'm just getting into Steemit and I found your post in an article on how to get started. :)
Thank you for sharing your story. It sounds like you have a lot to deal with!
Right when you said ringing of the ears and strange and annoying noises I knew you were talking about Tinnitus. My husband also suffers from it. He wasn't born with it. He was a Scout/Sniper in the Marine Corps back in the late 90s and they didn't allow them to wear hearing protection back then because then they wouldn't be able to communicate with each other effectively. (CRAZY!!) Thank goodness technology has saved current and future Marines from this.
Needless to say now, he lives with this horribly annoying and frustrating damage to his ears.
Do you have to sleep with loud noise? Like the TV on really loud? White noise or anything like that? He said it's the only way he can somewhat escape the never-0ending racket in his ears.
It just sounds so bad. I feel for you. :(
Your other illness sounds very debilitating too. I really like that you're sharing your story about your experiences. It's really inspiring to others who live with these ailments and even to people who have other chronic conditions they deal with.
I look forward to reading more of your articles. :)
Jess
Great intro! I have mild tinnitus getting worse with age. I had no idea what it was until I was maybe 25, living in a hippie house in Philly, and randomly picked up a book about it. Stay strong!! Thanks for your articles which are great for a newbie such as myself.
Thanks for sharing Glenn. Your story just shows that reality it's a matter of perspective, what is normal and what is not. Nothing compared to what you wrote, but I am colorblind and everytime I have a 'that's not green' answer from someone, I always think how different probably reality looks like for every person. But there is no way to know what actually reality is. And funny enough, while I finish writing this sentence I'm hearing a ringing in my left ear.
Lots of positive thoughts to you!
Hey Glenn! This is gonna sound like a spammer, but i'm not, I promise. I'm Kimmy, I live in LA, & I sell hemp extract (CBD oil) for a living. Have you ever tried CBD for your menieres/tinnitus? People like you have had relief from their symptoms using this cannabis oil. There's no THC in ours, as it comes from hemp so it's legal in all 50 states. Let me know if you would like some info on it. I'm happy to email or call and talk. ~kimmy
Great post, @mindover You wrote, "I hear high pitched tones, low pitched tones, and whooshing sounds. Others hear clicking, chirping, screeching like nails on a chalkboard, and more. Some hear their heartbeat pulsing in their ears." All of that, other than maybe the nails on a chalkboard is what I have in my ears all the time. Although, I guess it does screech really loud sometimes. I had thought it may be a mild bit of Tinnitus, but never really gave it a lot of thought, trying my best to ignore it. Great comment about "Who wakes up every day and kicks hardship in the balls." Yeah, that's me for the most part and I'll just kick the thought of maybe having Tinnitus in the balls too... All the best
Wang, you are starting to be like clippy from Microsoft old office.
LOL, I hated that F'ing thing.
Thanks! I appreciate it!
Thanks! Glad to be here.