I've already posted in here, but I guess I've been avoiding telling my story. I found some inspiring stories on this thread, although if I start I'm afraid I'll begin with way too much detail and who wants that, right? I'm not quite sure when mine started, my guess is about ten years ago, but it could be further back as the injury that made it start was further back, I don't know. I'm kind of in denial about that. It's the detail I'd like to wait on. But the way I found out is almost as traumatic.
I thought I had allergies for years that were causing the pain, until about two years ago. Then right after finding out my husband was having an affair at work, I went into have my ears tested. We were separated and I started googling the way my ears were feeling. I came upon a term "hyperacusis", but kept going back to “recruitment”. I kept thinking to myself “No, it’s probably just hyperacusis. I even told my neurologist my thoughts about the hyperacusis. I didn’t say anything when I made the appointment though, I just went in and had the tests. The person giving the test was awesome and so helpful to my pain and limited income. I went into the patient room. The doctor walked in and said, “You have recruitment hearing loss, the damage is permanent. There is nothing you can do.” He turned around and walked out. It’s not so much that it was bad news, I won’t go into those reasons. But it was that I felt alone, no husband, no one.
Now that my husband and I are working things through we understand how my going deaf played its role, don’t get me wrong, it’s completely his fault! But, life happens and you move on. I also saw how it was affecting my kids. I wasn’t communicating well with them, this has improved so much! Life has improved so much learning what was happening to me, though at the same time it’s so scary having that “cut off” feeling from everything you know so quickly.
Due to my narcolepsy, I already have cataplexy, paralysis and sleeping issues. Now I have to deal with all this together. Once I was vibrant, outgoing and strong. Now I can be withdrawn, and staying at home suits me fine. I found this site because I wanted someone to communicate with that had inkling of what I was going through without the "Oh you poor dear" stuff. And finding this site was like a goldmine, because people here have way more than an inkling!! Sorry, this is long, but I tried and it would have been longer if I hadn’t tried.
One more thing, I'm not sure how it's affecting me as I've just started looking into this aspect of it. But apparently, trauma to the brain can cause your thought process to be messed up. Where I think I'm functioning as I always have, somewhere in there I got turned around. And I don't know when I'm saying the wrong things or behaving in an unacceptable social manner. The more I read the more upset I get and want to just give up. I'm trying not to. The stupid decisions you make in your youth really affect you the rest of your life!!!