I just don't know how I'm going to live with this. I feel so desperate, so scared, so alone and so panicked. It's affecting my ability to function and I find no joy left in life.
I'm so sorry Angel for what you are experiencing. I know how you feel. I'm not saying that just to be nice. "I know,...how you feel." A little over a year ago when I was struck with this scourge, I had the exact same feelings. I still recall sitting down next to my wife on the couch 3 days after the onset and telling her with teary eyes "I just got through the last three days with this, but I don't know if I can live the rest of my life like this."
Just a quick word to fill you in on what happened to me. In the middle of the night I was awaken from sleep by a loud popping and crackling noise in my head. At first I thought it was just some sort of head congestion. After a few minutes I got out of bed and discovered that I had pretty strong vertigo and also could not hear anything out of my right ear. I tried to "walk it off" but to no avail. After a while the popping and crackling noise subsided, however I was left with significant Tinnitus on my right side along with the 100% deafness in right ear. Three days later, I was sitting on the couch in tears.
Fast forward to today about 14 months later. In spite of getting treated with prednisone right after the "event", there is no change. Total hearing loss in right ear, significant Tinnitus (loud hissing noise, like untuned radio, idling jet engine,) and along with that I have severe Hyperacusis in my good ear that makes being around a lot of talking people (especially inside) almost intolerable. To put it mildly, it has changed my life.
I'm not telling you all this to further depress you. I'm telling you this to try and give you some hope for the future in the even that your condition does not improve outwardly. I say "outwardly" because I am hear to testify that there is a future. Things will get better even if your Tinnitus does not. That "getting better" will come from within. I have been there. I am there. And I am going on.
The first hurdle I had to jump over was total, complete acceptance. I know thats a hard thing to grasp, but there really is no way forward short of that. By giving in to complete acceptance, you are able to once again start focusing on other things. By being able to once again focus on other things you will feel like the volume of the T is actually going down (when in reality it is not). This will also help with the stress/depression that points you right back to the Tinnitus. By full acceptance that leads into being able to again focus on other life matters, you will begin to have little periods where you look back maybe only a few minutes and realize that you forgot that you have the Tinnitus noise for those few minutes. That is your starting point. A few minutes becomes more minutes. More minutes becomes an hour. There will be many failures along the way where you give in to the "noise" and are faced with the enormity of this insidious noise screaming in your head. That's okay, none of us have super powers. After you have a good cry,.. just start again. Full acceptance. Try not to think about all the years you have to live. Just live,...now. Tomorrow will come, when it comes.
This is the path I have chosen. I really didn't have a choice. I decided that I wasn't going to kill myself, so my next thought was..."Well, if Im going to remain living with this thing, then I guess this is it. Me and Tinnitus. It's here to stay, so I may as well get on with it." I also had a time where I sorta interviewed myself by asking myself..."Do I still enjoy rising in the morning? Well, not as much as before, but yes. I still enjoy getting up for another day." "Do I still enjoy seeing my family?" Again,..."Well yes. It's a little bit more trouble being with them, but yes, I still get some enjoyment from it". And it went like that. I began building a case for going on with life enduring the scourge of Tinnitus.
Today, it's still there. Loud as ever. On good days, or moments, it is just a somewhat mild constant hissing/static noise in my head. On just okay days/moments it is a loud hissing/static noise with little high pitched squeaking sounds thrown in. During bad times, it sounds like I'm standing next to an idling jet engine, and I then usually have to do something to change my environment.
I guess I should tell you that my personal Tinnitus/Hypracusis may be quite different than yours. My Tinnitus is very much noise activated. It never ever goes away, but is very much affected by the surrounding noise environment I am in. At night when things get very quiet, after a time it begins to wind down a bit. By the time I wake up in the morning it is pretty mild until I get up and turn of the water or basically do anything that causes even mild sounds. Then the Tinnitus cranks up again to a much more intrusive noise. But like I have stated in the above, my attitude is much different now. I still sometimes get angry with it and roll my eyes at the utter nonsense of this thing, but I am living with full acceptance. There's no getting around it, we are in every sense of the word,...handicapped. I use that word because when I see the many cases of handicapped people who are living with such incredible challenges, and I see them making the best of it and living seemingly enjoyable lives, I want that, and I am going to take it. This is why I had to get to that place of full acceptance.
Well Angel, I have gone on more than I had planned to. By sharing these sentiments with you, it is also therapeutic for myself. I really felt the anguish in your post and truly feel for you. I hope these words are of some help in taking the next step in your journey. There is a life to live. Maybe not like before. But it's there. If it's like myself, it will be the biggest challenge you will ever face. You must face it, and accept it. The life you will live will/may not be like before. But it will be worth living. J
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