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    It's been quite a year! #TraumaticBrainInjury #HearingLoss #ChronicIllness #ChronicPain #Depression #Anxiety #CheckInWithMe #CheerMeOn

    A year ago, today, I went to sleep without a thought in the world of how the following day would begin one of the most difficult years of my life.

    I went to work feeling fine and ready as I could be to take on the day. Within 5 minutes of my arrival, however, the universe had other plans that altered the remainder of my school year and perhaps the remainder of my life. I do not have a memory of exactly what occurred, but from what I do recall I stood on a chair to write on my whiteboard for the day. The next thing I knew I was on the ground slouched up against my desk with my legs stretched out. I felt like my ankle was twisted and that I'd likely have a headache the rest of the day. Boy was I in for a rude awakening that came the next few days. It was a terrible way to end 34 and ring in 35. I am so thankful for the members of my school family who helped me that day. Because of their calm and collected demeanor I remained calm and didn't think much was wrong but understood that I'd have to go to the hospital anyway.

    I don't recall a whole lot about my time at the hospital aside from the knowledge I had a head CT and xrays of my foot/ankle area done. I remember being told I had a sprained ankle and then was given a boot to wear that felt way too clunky for my liking. I know I texted my sister to wish her a happy birthday and to let her know as my emergency contact what I knew of that occurred. Her response was "maybe you shouldn't fall so much." Her words didn't really sting until later, the following day (my birthday) and in the months to come, as I became aware of the breadth of my injuries. It became another justification/confirmation as to why my family was not in my life at that time. There was not a single time after that day that my sister checked on me to see how I was.

    I would have felt extremely alone had it not been for my best friend who daily made sure to check on me, let me know I had a shoulder to cry on and listening ear, and someone who would hop on a plane if I said I needed them with very little reservation. A case worker through workman's comp became my angel here on Earth locally. The therapists who entered my life became my additional support system in every possible way they could. Otherwise, it was all me and me alone navigating this new world of mine.

    To make what could be an extremely long story shorter, the remainder of this last year of my life has been a rollercoaster with every emotion possible running through my veins. Through the tremendous amounts of physical therapy, vestibular therapy, cognitive therapy, and mental health therapy I have been able to see that my strong resilience can help me navigate anything that comes my way. I definitely shed more tears over the course of the last year than any other in my entire life. I have felt awful more days than tolerable. On and off I have not been able to see a light at the end of this tunnel from hell.

    Missing half of a school year, lots of events I had major FOMO about, feeling like a prisoner in my own body, and not knowing much other than day to day functionality was really tough. Throughout the work I've done with my therapist, I was able to work on my PTSD and use EMDR to prepare me as best we could to return to work in July. I took it upon myself one of the first days back to go directly to the spot of the accident and face it. After all, I would have to walk past it every single day, multiple times a day. Since then, I have continued to working on navigating the feelings I have about the entire situation. It has been interesting to see what my viewpoint is now.

    While I will never fully be ok that this occurred and obviously wish it didn't, I find myself feeling grateful more and more for the change in perspectives that the accident provided.

    I am grateful for being given the time/being forced to truly focus on my wellbeing and only my wellbeing for the first time. I am grateful for learning who the true support system in my life is and having the time to figure that out even if that added excruciating pain during the process. I am grateful for holding strong to the boundaries I had to set throughout the last year and for future years to come with my family on what I will and will not tolerate. I am grateful to be able to be back at work instead of sitting at home just wishing I was there even if it meant being stressed out. (Who knew that I'd actually be grateful for the ability to feel stressed by work chaos?! I am more grateful for the spirit days, assemblies, celebrations of student accomplishments, & wins in sports and/or organizations.) I am grateful for this injury giving me the opportunity to connect with my students in ways I would never have truly been able to understand. I am grateful for hearing aids that have improved my quality of life. I am grateful for the realization of the many times I have stood on a chair, table, etc over the course of my life and career that didn't result in injury. I am grateful for the fact that I will never look at a chair in the same way. I am grateful to be given the gift of another birthday when I know all of this could have resulted in much worse.

    Going back to work, navigating the limitations that continue to exist and/or present themselves at inopportune times, in various avenues of my life, & dealing with the dysfunctional family relationships that opened up slightly after the birth of my nephew (the highlight of 35 for sure) has been draining for sure. I live in a permanent state of exhaustion. I am realistic to know that I still have a long way to go in my recovery process and am aware of the fact that the person I was before the accident isn't the person I am now.

    I am looking forward to this year coming to an end and starting new. 36 is going to be a much better year for me! It has to be, right?!

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    Yo-yo dieting

    I am deafblind Asperger. I was born premature with with an under active thyroid and Asperger syndrome a minor hearing loss was detected age 4 started wearing hearing aids at age 11 and progressed to total deafness age 30. I was only relieved I could stop wearing hearing aids now because they hurt.

    I have been self harming epileptic and having mental health problems since teens. Sight problems since 17. I a m happy to be deaf blind Asperger but could do without the additional mental health issues but these things are not up to you in life I have had to learn that the hard way.

    I have been yo-yo dieting since my mid 20 when I slimmed down. I will slim then stop skimming. Get overweight and then start slimming again so I know the disadvantages of being over weight . I have tried bulimia too but for whatever reason I simply cannot do it. This is very frustrating but I guess a blessing in disguise since I have heard bulimia is very bad for you.

    Problem is since Covid I have taken to comfort eating, and I have a lot less energy which makes losing weight even harder than before and I am yet to have any success even though I am told I should lose weight or at least not donate my too small clothes to charity yet.

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    Chronic illness level up!

    New diagnosis: POTS. Was on ivabradine for a few weeks and ever since I’ve come off it my heart rate hasn’t been happy. For some reason my blood pressure has suddenly become normal after being low for months. Not complaining, just very confused.

    Went for an MRI last week for my sinuses, said it would be about a week for results but still waiting. On the bright side, that probably means it’s not (too) bad news. I’m glad I pushed to see them earlier though, because I caught a cold from my housemate and it caused hell with them. Constant congestion, migraines, lack of appetite, nausea, coughing, and I took about the same amount of painkillers in a week that I had taken in the last few months/ maybe even a year (I am VERY opposed to them & chronic pain has left me with a high pain tolerance anyway).

    Waiting on GERD referral & have heard nothing. Doctor prescribed a PPI but didn’t put it on repeat and the progress made on it was lost when I had to fight for a week to get it re-prescribed after I had ran out.

    Chronic pain has been quite a struggle. I’m concerned about the increase in occurrence of pain so I booked a routine doctors appointment. Also having a flare up of my foot pain (tears when walking) so it’s just an extra thing I get to deal with.

    And on top of all that, trying to keep my mental state okay and making it look like I’m okay to everyone else. It’s all just really exhausting, but there’s this quote that I remember a lot (but will probably get it wrong slightly): “it takes ten times longer to put yourself together than to fall apart”

    Okay, I’ll finish this with some better news. I’m cleared 1 year post-op and hearing loss is confirmed not to be an issue anymore. It was borderline but I’ll take the W. I also had my two jabs, perks of being disabled I guess.

    #ChronicIllness #ChronicPain #Surgery #Postop #MentalHealth #Migraines #PosturalOrthostaticTachycardiaSyndrome
    #GastroesophagealRefluxDisease #HearingLoss #Depression #InvisibleIllness #Disability #Disabled #BackPain #chronicbackpain #Lowbloodpressure #BloodPressure

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    Stapes surgery: your thoughts/experience #Deafness #autoimmune #MyastheniaGravis #Surgery #ChronicIllness #sjogren ’ssyndrome #POTS

    I have very severe cochlear otosclerosis with severe to profound hearing loss in both ears and multiple autoimmune and chronic conditions. Since I am using hearing aids on both sides but getting little benefit from one of them due to the severity of the loss and difficulty with speech discrimination too, my doctor wants me to undergo a stapedectomy. I’m pretty nervous to undergo this surgery and would love some feedback about pros and cons and any alternatives I may be missing. Thanks!
    #Deafness #autoimmune #MyastheniaGravis #Surgery # chronic illness# sjogren’ssyndrome #POTS #Hearing loss

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    My tinnitus and an unintentional experiment.

    I'm 64 and I've been plagued with tinnitus for as long as I can remember. I have hearing loss in both ears of the moderate to severe range. My sounds resemble a piercing shrill, the woods alive with crickets and the hum of a diesel tractor outside my window.
    Recently I went away for a week to visit my daughter and I was home alone all day with her 2 pets while she and her husband worked. For a week ! It was blissfully quiet. I checked in with my ears a few times when I realized they were silent. Silent !
    I live in a 28'camper with my spouse. My daughter's house has a two story vaulted ceiling. The acoustics were amazing.
    The first thing I noticed when I returned home to my little camper was the low loud hum in my left ear. Wow it's back just like that.I want to mention I have a variety of stress ills, cptsd, anx,dep..
    So what was different at my daughter's house ? Lack of stress, lack of cannabis (I do the medical kind and it works for me), or the acoustics ? I have my shrill whistling back now, going on 5 days straight😤#Tinnitus

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    ☆ " The Viking Princess With A Pure Heart Of Gold " ☆ #Poetry #self -Image

    ☆ " I'am Only Nice To Other's Who Are Kind And Nice Back... I Will Alway's Help Someone In Need.. I Will Alway's Put A Smile On Other People's Face's... To Brighten Thier Day... I Love To Learn About All Mental Health Issue's... That Other People Go Through.. And Make It My Mission To Understand And Learn More.. To Help Them Become Better Reflection's Of Themselve's.. I Have Alway's.. Had This Need To Just Help Other People.. It All Started When I Found My Father Half Way On The Floor.. He Was At Time Dying From Cancer... I Put Him Back Into Bed.. At The Age Of 6 Year's Old... But Sometime's I'm Weary Of People Alway's Trying To Take Advantage Of Me.. I'm Not Nieve Maybe When I Was Alot Younger... Now I Just Don't Trust Anyone Anymore Especially Men... I Will Alway's Be On Guard With My Emotion's And Feeling's... I May Take Time To Be Fully Open With People... It's Definitely Harder To Keep All Of My Mental And Physical Health In Line... People Alway's Assume That I'm Just A Mean Grumpy B****.... All The Time.. That's Just Not True.. I Live With Chronic Pain..Memory Loss.. Hearing Loss And More.. But I Put On A Happy Face To Really Hide My Pain.. Nothing More... All That I Really Wish And Ask Is To Be Understanding..Kind..Patient"☆ Sincerely, " Your Mighty Viking Princess " ☆ SKADI ☆ #Poetry #self -Image

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    Gotta catch ‘em all

    The last few weeks have been particularly hard on me.

    Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

    I’m being referred to cardiology for a tilt table test.

    In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

    I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

    They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

    My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

    It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

    And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

    Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

    I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

    Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

    #ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia

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    So frustrated trying to find employment!

    #MenieresDisease First of all I am frustrated of my diagnosis which I really don't have one except for that I have a vestibular disorder. My original diagnosis was Meniere's disease but because my hearing loss seem to be too sudden they disregarded that diagnosis. But yet all of my symptoms point towards it. I had extreme vertigo everyday with my hearing loss, constant tinnitus, unsteadiness, extreme nausea with vomiting and extremely fatigued. This all started in 2016. I could not work for 6 years because of this debilitating disease and yet I couldn't receive disability benefits either because nobody could give me a diagnosis!

    My symptoms have finally gotten to the point that I only have episodes in which they last two to three days and they come on about every 2 to 3 months, or with extreme changes in the air pressure due to storms. Living in Florida we have storms all the time so I'm finding myself having them more often during rainy season. I used to have a career as a Credit Analyst underwriting commercial loans with a degree in finance. Since I started feeling somewhat better in the last year and just having episodes I figured I could return to work. I accepted a position as a Title Processor and was very excited and eager to learn the business. It felt great being able to get up in the morning and drive to work and be a productive person in society again, however my episodes caused me to miss work three days at a time every couple of months because I was so dizzy from the vertigo that I could not drive a vehicle nor could I concentrate and the nausea was so bad with extreme fatigue. Oh and it has also caused my eyesight to be very poor as far as depth perception especially at night. I'm very unsteady when I walk I always look at the ground and find things to hold on to. Loud noises make me very tense and jumpy. It feels like a bolt of lightening going through my entire body, but only when I'm having episodes. I also noticed my anxiety gets really bad and I get really sweaty. And because of these feelings that I get I tend to get very irritable. Everything was going great at my new job as a Title Processor until I had to call off a third time for 3 days in a row because of my episodes. When I return to work I also had a day that I felt on edge and snapped at somebody. I didn't mean to and I know they don't know what I'm going through but it's extremely frustrating to me that people can't see what I'm going through and how I'm feeling. You can tell them anything you want about your disease however they don't care because they can't see it and I've had a lot of people not even believe me?! My boss thinks that I could just take a pill and it'll go away. She actually said that to me. Again, very frustrating. Ultimately they let me go after working there 11 months. And even got a raise after the first 6 months I was there. I was never late to work but I did have to leave early one time because I felt an episode coming on and wanted to make sure I got home okay. Very embarrassing.

    I found another job with a different Title Company within a week after being let go. This one only lasted 2 months even though I drove when I shouldn't have and worked through my episodes. I made sure I was to work early and I stayed the full time and never left early, even on my bad days. I thought this would alleviate me from losing my job again. However, I was having an episode day and was very tense and on edge and apparently I sent an email to an underwriter that was inappropriate or as they said "not professional." All I wrote was, " in this case, the trust prevails over the court proceedings in the death of...." Somehow this was interpreted as an unprofessional comment and I was let go because of it?! To me, I was merely just stating a fact, but because I didn't have empathy in my sentence I was fired for it. I'm sorry, but nobody seems to have empathy for me and what I go through every day. So I guess I don't know how to be professional anymore because I have no empathy? I guess I don't. So now I've been unemployed for a month and still can't get disability benefits, possibly unemployment but that doesn't pay anything. At least not enough to pay my rent, food, car insurance, Etc. Unemployment is a joke but yet we have to pay into it. And disability is kind of a joke too! I know people that get disability benefits that don't even need them and here I am suffering every day especially my first 6 years that I was so sick every single day and couldn't get anything?!

    Again, I loved my job as a Title Processor, especially after not being able to work for 6 years! But because nobody understands that I'm going through nor do they care I cannot have a career in this field. I have recently taken up a very labor intensive job doing commercial cleaning for restaurants. I'm trying to work nights from 12:00 a.m. to 6:00 or even 7:00 a.m. These hours are the worst and my fatigue and physical abilities do not allow me to do this work, however I'm doing my best and I actually had to leave after my second stop when I still had one more to do just because my body could not do any more work. I was very dizzy, light-headed, nauseous, and fatigued, and I could not walk well because of my balance. I felt like I was going to fall to the floor. They allowed me to go home but I'm afraid I'm going to end up losing this job as well. A labor intense job is not a good job for somebody who has this disability. And with this job I only get one day off a week. As I'm writing this I'm dreading the fact that I have to go in to work in a couple hours. Whereas when I worked for the Title Company I was excited to go to work. Now I'm extremely depressed, anxious, and scared of when the next episode is going to come on and I won't be able to work or drive my car. I'm starting to feel extremely hopeless to the point that I've isolated myself from people. I feel like a huge failure! I have been told in the past while being very sick that I need to get over myself, also been told that I'm crazy and delusional. These words are very hurtful as they have no idea what I go through everyday and the struggles I have to go through to be productive person in society again. These people need to be educated and more aware of these invisible diseases. People are just ignorant anymore and not tolerable of anything. So how does somebody with this disease function in society? I've been trying everything I can but can't seem to get it right.

    So exhausted and frustrated!

    Does anybody have any ideas for a job that is going to pay a decent salary that I can actually do?

    6 comments
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    Reality #TraumaticBrainInjury #ChronicIllness #Depression #Anxiety #Fibromyalgia #PTSD #ChronicPain #HearingLoss #notenoughspoons

    TGIF! This week was so long. And, if I am being honest...it sucked. I have been slapped with the realities of what my injuries from my fall look like back in my work environment. It has been really hard on me to not feel like I am able to do things at levels I once was. I feel like I am unable to trust myself to make certain important decisions and am experiencing diminished confidence because of that. I feel I am not doing enough to help some students and feel overwhelmed by way too many factors beyond my control. These things make me more on edge and/or sometimes short tempered. I do not like that feeling and probably haven't been the easiest person to be around. So many times since school started again, I have felt like a burden from having to ask so many questions multiple times because I don't remember the answer or even that I asked already. Sometimes that even includes after I have written it down somewhere. I have been feeling really embarrassed by not being at the level I want to be, wish it wasn't taking longer than normal to learn student's names, etc. Learning how to do things in new ways, figuring out systems and tricks to help myself out, and feeling all the things has definitely exhausted me. Being a frustration crier always stinks too!

    I guess the silver lining has been that I can understand more than ever what some of my students experience as they try to navigate their disabilities.

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    Uphill battle

    Bit of struggle again.

    My hearing is going again. The doctor doesn’t seem bothered because it’s not blocked and doesn’t look infected, and said to come back if it continued. It’s already been a month with it and it’s not gone away. Its incredibly frustrating when it goes. Its disorientating. And surely no visible cause is concerning? Especially given I haven’t made it a year post-op yet.

    My heartburn and acid reflux have taken a sudden turn for the worse, around 5 years into suffering with it. I was almost constantly taking gaviscon over the last few days after I came back from my holiday, so I booked an urgent appointment because I couldn’t live like it when it was affecting my sleep too. I’ve got a prescription and they want me to have a OGD. I don’t really see why, because it’s genetics.

    I also caught covid again. I went out to a concert and that’s all it took. I however kept testing negative from the Tuesday I first was symptomatic, until the Saturday when I finally tested positive. The one time I went out somewhere that had a lot of people. (Disclaimer: I am fully vaccinated, have the booster and I had covid before (another disclaimer: back when the vaccines weren’t around and my entire family were basically key workers)).

    Also had a bunch of other minor illnesses and general conditions/ chronic pain I have getting worse. I think it’s gonna be sick girl summer.

    #ChronicPain #BackPain #HearingLoss #GastroesophagealRefluxDisease #Heartburn #AcidReflux #COVID19 #Postop #ill #hardtimes

    2 comments