I'll tell you how I live and hopefully some part will speak to you.
First, I
have to believe that life is beautiful, that it's worth it. I believe that there are moments and people that make it so. I have my family that loves me so much and a dear friend that comes rushing over when I'm having a breakdown. I love to feel the sunshine on my skin and fresh shortbread cookies crumbling in my mouth. I dance in the kitchen all alone without music, refuse to paint my nails anything but dark red, and love the way a sundress brushes against my legs when I walk. These kinds of things are so small, so insignificantly small, but in the moment that I enjoy them is a moment that I'm reminded that there is beauty and happiness in the world; it's like finally taking a breath after feeling I'd suffocate. I live for these moments. I wake up in terrible pain with my ears screaming and auras flashing in my vision, but I know as soon as I open my bedroom door I'm going to be greeted with a toothy, 7 year old grin saying "good morning Tavia." It's that same brother that panics every time I have a pain attack and am doubled over that he rushes over to give me a kiss and repeatedly tell me he loves me. I might be going through a lot of crap, but how could I not be greatful and touched by a moment like that?
I made taking care of myself my top priority. Honestly, the world just revolves around me right now and I've had to learn that it's okay and definitely not selfish. I've had to learn to be compassionate to myself, validating what I'm going through and that it's okay that I'm struggling. I'm delicate with myself, using kind words and treating myself to hair masks, self manicures, and whatever else I want to please me. You are already going through enough, there is no need to hurt yourself worse with self judgement and thoughts of "Do I really have it that bad? Maybe if I could just suck it up and be stronger I could live my life and stop being a burden to my family and friends." I did this for much too long when I was first coming down with hyperacusis. I wish I could just go back and give that girl I was the self compassion she needed instead of the doubts and judgement I was beating her with.
I sat down with a google doc entitled "My Identity, I am..." and wrote out everything that made me myself that my medical conditions could never take from me no matter how hard they try. I have pages of bullet points, things like "the only person at culinary school with enough spine to stick their hand into 300 degree F boiling sugar," and "the girl who wears leather jackets with sundresses and too tall high heels." I sat and read through all these things, that probably would have seemed stupid or insignificant to someone else, but to me it was a revelation to see there was pages and pages of little details about me outlining who I was. I'm me - I'm not my pain, I'm not the screaming in my ears, I'm not my condition. We spend so long living in those we forget who we are underneath it all. This was the turning point in my depression. I went from living in constant misery to being able to handle everything much better with more episodes of happiness. I can't recommend this enough, I would have done it months ago had I known how positively it would affect my attitude and ability to handle what I'm going through.
I believe that I'm going to come out of this a better person. Every single time I've gone through something difficult in my life I've always come out on top and I've come out better. Growing up with an abusive sister was absolute hell, but now I am an incredibly kind person and can't stand to watch bullying and not go down guns blazing. I wouldn't have asked for an experience like that, in fact the best day of my life was when she moved out, but looking at who I am now just amazes me how we can grow from our experiences in hell and makes me glad I went through it. My point is, it's comforting for me to be curious about who I am becoming. Someone that can handle anything? Someone that can lift others out of their pain and give understanding? I'm not sure quite yet, but I can't wait to meet her, to become her. You're going to become stronger too, someone new, someone who can deal with things that your current self has no idea how you would ever get through. When I first heard of hyperacusis during my internet research trying to figure out what was wrong with my ears, I read a story online of a man that had it and how debilitated he was. I thought "How awful, I could never live through that, what a miserable existence." Lo and behold, here I am 6 months later at the same level of debilitation and, miraculously, living through it. We adapt, we grow stronger, we become better as a person. You'd be amazed at just how strong you really are and can become.
I know that religion isn't for everyone, but even before this tragedy of health hit me like a truck I was a strong believer that trials are the effect of living in a mortal world and are absolutely necessary for us to learn to become more like God. I've become closer to him as I pray more, pray for strength to get through. I've had times where I told God that I couldn't do it anymore and He was going to have to take the load that day. And He did. I wasn't magically better, the pain wasn't taken away, and I wasn't suddenly happy; but I could finally get out of bed for the first time in days, the pit of depression that weighed so heavy in my stomach I felt it was going to pull me down through the ground was lightened, and the pain wasn't so terribly excruciating that I could get through my day without any breakdowns. It was as if someone was bearing the load with me, making it just light enough that I could handle it again. I believe what I'm going through is God's way of teaching me to rely on Him, His atonement, and His healing power. I don't expect a miracle, I have far to much to learn before this is taken from me. After all, in my religion we believe we all chose to come here, chose to go through what we do, that our spirits knew what we would have to bear so we could learn to be more like our Heavenly Father. If religion isn't your thing though, I understand, I just know I would not be surviving without it.
Get on the forum and reach out to us.
@aot has gotten me through quite a few of those times I was so miserable I couldn't breath, and for that I owe him a world of thanks. Seriously, I'm not spewing crap when I say you can message me any time and I'm sure there are plenty more of us on here who would say the exact same. We're all on here to support each other. Never be embarrassed to break down or freak out, we've all been there and no one is judging.