Nobody Believes & Needs To Change Now.

 

Imagine living in a world where basically nobody believes you that it is real, or they do not believe how debilitating the afflictions really are. I have had to explain Pain Hyperacusis & severe tinnitus to way too many people I have encountered in the last six years. It gets exhausting. Moving from residence to residence because I don’t have enough funds to rent my own house, because of being on a disability income. Some family gaslighting me, telling me that I did this to myself, I should have made better choices in my past, why does that matter right now? The only thing that should matter is that I am trying to get better, and have since being diagnosed. Some family also telling me that only “I” can only “save” me. It’s funny when people say this, because even a bus ride, the sound of the fridge, and traffic moving by all causes relentless pain to the point of not even being able to take care of myself, even my breathing when I am sleeping with ear protection on causes aching and stabbing pain into my ears, and wakes me up. The sounds of the shower water running stings like a hot blade into the ears and head, and I shower maybe once every two weeks because of. What does one do? Where does one go?. Sound is everywhere, and there is not much escape, unless you have a wack load of money and can afford to rent / buy your own quiet house and soundproof it.  

 

If one does not have compassionate & loving support, when being as severe as I am, how does one get by? “Every person who I know who has a disability or health ailment does not complain as much as you do, they can live and leave people alone. Take some drugs, do some therapy” I hear from people. There are no drugs that help, in most cases they make the patient worse, I did the drug route, and now I am in the severe / catastrophic class because of them and cannot get off because of symptoms getting so much more worse. How does one do psychotherapy where even talking hurts, or they can’t afford a text therapist? because many therapists do not work by text, and if they do, they are not knowledgeable with Pain Hyperacusis & Tinnitus & cost more money most likely as well. This leaves one stranded in a world where not even the medical field understands, and the wrong information is being published by audiologists for severe cases in my class.

 

I take things one minute, and one day at a time. However, I did go through a wild experience to get to where I am right now, this is on a different topic but coincides with disabled and vulnerable people. For eight months straight I was living in a Narcissist household. I was lured in telling me that the household was loving and supportive with every roommate, the lady knew I was disabled and vulnerable, and this is what narcs prey on. It sounded like my cup of tea. Little did I know after two weeks of being there that it was an abusive household, and I was being mentally, psychologically and physically abused. The household was “quiet" and everyone was at work during the day, so I put up with the abuse for eight months straight. It got to the point where I got into a verbal fight with the Narcissist landlord over the holidays, and she got even worse. Turning her TV on volume 50 to hurt me, it hurt so much, I booked an AIR BNB for the holidays and left. I ended up leaving where I was and blocking this landlord, and every person involved in the household. One housemate was kind, but I wasn’t risking anything and had to block everybody.  

 

Things started to get better, as I knew the lady who ran the AIR BNB, a kind loving, spiritual person just like me. She did not live in the house, but I trusted her household. Little did I know, after being there for a couple of months, the person living in the basement was another Narcissist. How could this be? in the place I trusted. Because the owner was ninety percent never at the house she had no clue. I was looking for a new permanent residence anyways, and this “clown” was in the basement, I was on the third floor of the house. Narcissists are very clever and smart and know how to throw their victims under, they get to know them inside and out, and plan to dust them eventually, they seek people who are hurting who can't fight back much, it feeds their ego. This same thing happened to me again in this residence, and I had to leave, and the owner was siding with the narc, even though I told her what had happened, it was no question that I had to exit.

I called a place I was meant to see a couple of weeks prior to leaving, and the landlord was still renting out, I jumped on it and headed 3.5 hours west to go and see it and nailed the interview. I stayed at a friend's house for a week with a 55db loud furnace next to me and wanted to move to the new residence sooner. I was about to book another quiet AIR BNB, and then move. I ended up calling the landlord to see if I could go sooner, and wasn’t an option. About ten hours later, I was about to book the new AIR BNB for a few days before leaving. I ended up getting a text saying that the new residence was ready, and they were happy to have me move in. I ended up asking again if I could go sooner, with no answer. I logged into AIR BNB and was ready to book, all of a sudden, my bank account shut down (This never happens), and I had to get on the phone to figure out why, it took sixty minutes, and by the time it was all sorted out, I was too tired, and said to myself, I’ll book it the next day, my ears were a mess from the call. Long and behold three hours later I get a text saying that I can move into the new place in two days. So, I really and truly do believe a higher existence was at play, shutting my bank account down, and had different plans for me to move in quicker.

I am in the new place now, it is not perfect, cars are rolling by, loud fridge etc., but it’s all mine and I answer to nobody but myself, just the landlord is a complete jerk I have come to realize after being here for just a week now. There is a window that is not a window, that I did not notice when I viewed the place, and it's got an AC in it, with a wooden board around the frame, with no glass, so road noise seeps in like no tomorrow, I've asked the landlord to help me to put something over it, and he's slowing work on it. I really and truly do not think this is the place to call home, as it's far too loud, I already know that I will not be here long. This is the thing, and I'd like to make this POINT VERY CLEAR!. For me personally, I am too disabled to make correct decisions for myself, hence me living in this new residence I am in, this is why I need outside / family / friends help. I should have noticed that window, but I didn't because my brain can't think straight, dealing with so much on my own & being so disabled, I cannot remember everything. The extreme debilitation from Pain Hyperacusis & Tinnitus limits one, that making right decisions is far too hard, and I think this goes for a lot of people who are severe. If I were healthier, and in a more mild state of my illness, maybe I would be able to make better choices. What I need is family and friends to come together, to help me make the right choices, because I keep failing. I need them to help me to succeed, to live more comfortably with support around me to be able to manage better, so I'm happier, and not miserable all of the time, I keep trying to get people to understand how hell these conditions are, and I pray that one day people will realize. I guess take things second by second, minute by minute, hour by hour, and day by day. As I have been doing for the last six years. It's too hard now though, and I need my family and friends more than anything, to survive.

Hopefully this can be of help to anyone out there, who might be going through a similar situation, and can relate.

Nothing but love to you all thank you for listening, may we all heal one day!.

 

David Vance.  

Daily Mail New York Article / Pain Hyperacusis / David Vance & Andrew Johnston

 Article I did with Daily Mail Health New York on my experience with Pain Hyperacusis. 

Click the following link to check it out if you would like!. 

https://www.dailymail.co.uk/health/article-13141539/A-Texan-25-whos-experimental-brain-surgery-DEAFEN-cancer-survivor-driven-brink-suicide-Cruel-reality-living-rare-disorder-makes-faintest-noise-sound-like-bomb-going-ears.html

Hyperacusis Story w / Patient Voice Canada

Just recently shared my Hyperacusis & Tinnitus Story w/ Patient Voice Canada. 

Click the link to check it out if you would like!. 

https://www.patientvoice.io/shorts/life-with-hyperacusis-david

Hyperacusis & Tinnitus Interview & Day In The Life Mini Documentary / Globe & Mail Canada

 An interview and day in the life documentary I did with the Globe and Mail / Canada in 2019 about Hyperacusis & Tinnitus. 

Click the following link to check it out!.  

https://www.theglobeandmail.com/life/article-it-feels-like-a-knife-is-being-stabbed-into-my-ears-says-sufferer-of/

It Strips You Of Everything / Right & Wrong Approaches To Help Treat Pain Hyperacusis

 It Strips You Of Everything / Right & Wrong Approaches To Help Treat Pain Hyperacusis

First off, I am not a doctor, and I am not giving medical advice. I am speaking through my own personal experience, and other patients' experiences as well, that I know.

It strips you of everything you once had. Freedom, physically connecting with others, ability to take care of yourself - Cooking, cleaning, and sometimes not even being able to bathe because the sounds of running water are too hard to handle. When at a severe level, you cannot live alone, you need compassionate supportive help to do these everyday things, either in your home, or supports close to you for survival. If not, people may fail and get worse, there is no turning back, when at such severe levels with these auditory conditions, there are no limits, absolutely none, and this is what people do not understand who do not have these conditions, they destroy people's lives, and take everything away. In my five years of having them I have seen five people that I know commit suicide. Either because they had no supports, or they just couldn't bear the symptoms, or both, so it's no joke at all. These conditions need to be taken seriously, before more lives are taken. The ringing in the ears and head can get as loud at 130 dbs, and you cannot concentrate on anything, nothing, the loud piercing sounds take over, and there is no cure. The conditions strip you of your mental, spiritual, and emotional health and more. The conditions are invisible, and people who are not affected either do not believe they are real, or they do not think they are as bad as patients say. Who would want to isolate themselves from the world?, not wanting to work, not wanting to go outside, cook, clean, etc. It makes no logical sense for any human being to want to do these things. Humans are social creatures, and when connection is taken away, pretty much “Life” is taken away, as sound is everywhere. Who would not want to get Psychotherapy for mental health conditions to take care of themselves?. You usually have to speak to someone in office, or by telephone and the noise is to bothersome to frequently get help, it makes the afflictions worse. Who would not want to take medications for physical health problems?, most do not understand that most medications are ototoxic to the auditory system.

Pain Hyperacusis, and severe Tinnitus is no joke. It’s hard to take care of pre-existing health conditions, and anything new that arises when severe, or even at a mild level. Can’t go into the hospital if I break a leg or my arm, the cry of the baby, the sounds of the intercoms, the sounds of the ambulance sirens, can’t wait in the waiting room with so many other people as they make noise, and need to get a private room, and some establishments don’t offer private rooms. You tell the nurse you have Pain Hyperacusis and they have never heard of it, and you have to explain to them, and they still don’t get it. If you do break a bone in your body, you will most likely have to admit to the hospital, but it will be going to war with the world.

Just a few months ago I had a surgery in the hospital, needed to stay overnight for three days, and it was pulling teeth the whole time, even with the strongest painkillers on the planet that were given to me didn't help. One of the painkillers kept me up, and I did not sleep for thirty six hours, the other painkiller given to me instead ramped up my Tinnitus, and could not sleep because of that as well. Not to mention the nurses checking in on me every two hours. It was a nightmare, but I got through it. I honestly do not think I could ever do it again. There is no painkiller for me to take or medicine that can regenerate my hearing to do so. Even the strongest anti-anxiety medicines do not do the job, and actually make the conditions worse from taking them. Many people are scared to take medications that are given out by doctors ever so freely to try to treat these conditions, because they do not work. For most the pills make the problem worse from either the side effects, withdrawals coming off of them, or the medications eventually wear off. Even pills to treat other health conditions from my personal experiences and others I know as well, about eighty to ninety percent of them I / we have tried have made Hyperacusis & Tinnitus worse

If you ask most doctors on the planet if they have heard of hyperacusis, usually they have never heard of it. Some doctors will nod their heads and say “Yes”, but you can tell that they do not know at all. These so-called professionals will try to treat the afflictions as well, with pills and more pills, because they gain money from writing scripts. Some are compassionate and want to try to help, and they think it's treating “Anxiety” or “Depression”, it’s not the thing to do. Even most ENT / Neuro-otologist specialist doctors treat Hyperacusis & Tinnitus with pills as well. All in all, It’s the wrong approach, and so many patients are worse off now because of pills, it’s an exceedingly slippery slope to take them, and some patients have even seen "death".

Most online information is wrong from MD’s to treat Pain Hyperacusis and Tinnitus, sound therapy does not work and in most cases makes the problem worse, as the ears cannot handle any noise. The right approach for pain Hyperacusis is to protect with hearing protection (Ear Muffs & Ear Plugs), stay in silence and avoid most or all sounds, and to give everything time.

Thank you so much for taking the time to read.

So much love as always.

DV.

Community Art From The Heart

Community art from the heart is a new project series that is different and outside of the box, created by JD Rider & David Vance. We will be showcasing creative imagery of people in the community, and writings about them all in one, to hopefully help to lift people’s spirits, and others as well. Our first edition to the series is of Amelia from Ontario, Canada. A great writer, artist and more.

We hope you all enjoy!. 

So much love as always!. 

Next up we have, Travis. A man once on a beautiful life journey, but then some of life came crashing down on him, and landed him with severe Tinnitus & Hypercusis. 

We love you Travis!. 

Thirdly we have Kelly, she is strong in her faith, tough as nails, and has a big heart. JD Rider does this writing on this piece, and David Vance on the graphic. Thank you so much Kelly for being you, and for your kind and loving spirit, you help to make this world a better place!. 

Up next we have Destinee!, she is a very special lady who does not give up and is always caring about others regardless of her circumstances, she keeps going NO MATTER WHAT!, and I believe she is a special inspiration to us all. Thank you Destinee for your continued love, your soul is exceedingly unique, and cannot be matched!. Keep being you, we love you!. 

Next we have Breanne from Peterborough, Ontario, Canada. She is a 22 year old who has acquired Pain Hyperacusis at such an early age. Despite her illness, she still seems to be focused and motivated on her goals. Thank you for being you Breanne, thank you for helping to make this world a better place!. 

Irene, from Italy, is a loving and compassionate soul, who seems to want the best for everyone. Her empathy and love, does not go un-noticed regardless of having Hyperacusis & Tinnitus. Thank you for being you!, Irene!. 

Next is Justin Andreas, sadly Justin passed away not too long ago. He was such an energetic and vibrant soul, gave the world so much, and helped to make it a better place. We all miss you Justin, may you rest in eternal peace friend!. 

   Next we have the Co-Founder of Community Art From The Heart JD Rider. His compassion and love for others is beyond admirable, and a big inspiration to us all I believe in all areas, regardless of having Noxacusis and Tinnitus. Continue being awesome JD!. 

This week, the creator of Community Art From the Heart is featured -- David Vance. This thoughtful piece showcases David's talents as a musician and also traces the bondage he's endured with tinnitus and hyperacusis. Much love to David from the piece's creator, J.D. Rider.