Friday, June 30, 2023

Hard to do everyday normal tasks



The sounds of walking on hardwood floors, the sounds of walking on any floors can be really painful to severe sufferers having Hyperacusis & Tinnitus. If the floor is carpeted, things are a lot easier and quieter. The sounds of typing on the computer, the kettle boiling. The sounds of the computer being overheated, even with hearing protection on can cause piercing, and burning pain. The sounds of the beeps from the microwave are too much, so some resort too "silent" microwaves. Quietly talking on the phone, when using speakerphone with ear plugs in, on the lowest volume setting is painful. Running the shower water, running the bath water can cause pain so bad to make one crawl into the fetal position. This is why patients who are severe need outside help to do everyday normal tasks. 


I sit and I stare at myself in the mirror, I see a hurting man, a man with tears in his eyes who has to continue to fight daily mostly on his own. Family & friends do not understand fully, the condition is invisible, so to relay the way the pain feels to others seems completely impossible, even to the medical systems. No cure is available, no medications to manage, to restore the auditory system in any way shape or form. 


It's Canada day long weekend ahead, and there will be fireworks. People go to watch firework displays and to light their own. While someone with Hyperacusis & Tinnitus is trying to organize a gameplan to try to deflect the sounds. Hiding in the closet, going to a nearby hotel, extra hearing protection, whatever it may be, it's a must to avoid potential permanent worsening. 


Building up the energy to bathe, building up the energy to cook, building up the energy to explain to one more person what the conditions feel like takes a massive toll on the sufferer. Day in and day out getting up to survive, what kind of life is this?. It's not a life, it's torture. 


A 39 year old man texts a friend to help him to do his dishes, to cook, to clean etc. The person on the other end thinks to themselves - "What on earth is going on?, he's not 90 years old". Some of us with these conditions feel like we are 130 years old with the limitations we have. 


The man wakes up lonely, afraid and not sure how to handle another day surviving, He thinks to himself "why would God let such misery happen?". Continuous misery that is, with no cure in sight. All of the medication trials failing etc. 


It's not rocket science, it's simple. The ear / auditory systems need regeneration. For hyperacusis, tinnitus, hearing loss etc. It's something that has been studied for years and years and there is still no fix. People who have hearing loss can get cochlear implants, and help to restore hearing loss to a degree. The patient with Hyperacusis & Tinnitus thinks that maybe a cochlear implant could work for them as well, but if they have no hearing loss, then the medical practitioner doesn't even consider the procedure. Maybe the person with hyperacusis & tinnitus would hear too much, and the conditions worsen after having an implant?, who knows, or maybe they would feel better?. Every human body and brain is very different. What about severing the auditory nerve?, maybe that would help?. Again, finding a practitioner to perform it for Hyperacusis & Tinnitus is hard to find, unless you have an acoustic neuroma, the only way the operation would happen, I am told. 


Let's just hope that science evolves, and quickly for us with Hyperacusis, Noxacusis (Pain Hyperacusis) & Tinnitus. People are waiting who suffer, and not patiently. Some resort to suicide because there is nothing to be done, the pain gets that bad, also from not having much support. Suicides have happened, and we don't need it happening anymore. 


Thank you so much for reading, much love as always!. 

DV. 

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 re...