Hi, my name is Newlyrics718. I'm here because I was diagnosed with Menieres disease when I was 22, I'm now 38 and it's gotten so severe I'm scared to drive. I have lost 80% of my hearing in one ear and 40% in the other. I have 2 hearing aids but can't wear them much because it causes my attacks to be more frequent anytime their in my ears too long. I'm a marketer and thank God I'm an expert lip reader after all these years. Nice to read about ppl that suffer like me. I know how bad it can be. thanks for listening
My name is Samuel. I have been diagnosed with 20 different illnesses and/or diseases over the years. The last one, early stages of Alzheimer’s. I am emotionally drained most days. It feels like my memory is being erased, besides having problems communicating and process thoughts, emotions, and ideas, etc. The other issues worsen the situation as these still need to be managed, but they have a severe impact on my mobility, comfort, and other human basic needs. Anyway, thank you for listening.
#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?