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Hi Amy –
It has taken me years to understand and accept that the “signals” from tinnitus are not going away. In fact mine has steadily worsened with time (I get “bursts” of whistling/screaming that can last for just a few seconds or for several minutes, but never – yet – for hours). The only “cure” I have found is that when I am rested I can manage to pay no attention to the “noises off” while I focus my mind on something else. This makes it harder for me to hear “unexpected” inputs like a question from someone in the room, and it makes me appear a little deaf to friends – despite also having hyperacusis (over sensitivity to loud noise). But I am aware that I have now built a sort of mental filter for my tinnitus that it takes effort for me to keep in place. By the end of the day it can fall apart so I can have vision issues and tinnitus noises to contend with simultaneously.
At that point the best answer – for me – has become “music therapy”. I have always enjoyed listening to certain types of music, both classical and jazz, and I tend to end my day doing that now. Listening to music that I know and love is a way to push tinnitus noise into the background without so much effort and I do not need to open my eyes to experience the goodness that favorite music can bring.
I was also in an ICU on a ventilator for nearly two weeks in myasthenia unable to speak or move much and blinded by ptosis for a lot of that time. That remade my notion of what is “really not living”. Ever since that, a day that I can see the sun come up and my wife give me a smile feels more like a gift for me to try to make the most of. There are many things I have to do differently now, and not getting too tired to function on any given day while still rehabbing physically is a new challenge. But life is more challenging as we get older and most of us eventually need to learn to live at a different pace. MG makes that just more so for us than for others. I try harder now to make something good happen to me each day so I do not start down the road of getting exhausted just by worrying about why things are not better for me. Music that has special meaning for me helps me to do that. I hope you will find something that will work like that for you.