I can 'feel' my ears!

I cannot believe how fast thats gone..february I last wrote! That's 7 years now since my surgery!!

It's amasing because I remember so clearly that first few weeks of re-learning to walk and balance and waiting for the double vision to go!! Thankfully I can see again, didnt take too long! The balance comes and goes as many of you know. Fatigue is a real killer, whether from physical exertion or mental but it renders me unbalanced every time. I still suffer from debilitating headaches where I can lose two or three days to pain and lack of ability to do anything but they can be metered a little by having an easier life and Im working hard at that :) Chickens and ducks. Thats my answer!! They've been just the best therapy! They dont ask for responses to their questions!! So I dont have to think! I can lose hours just watching them. Sitting still and resting for once and they appreciate everything I do for them even when I have those days where I feel like half the person I was. They think Im ace!! 

Im actually off work. It got too much and I couldn't concentrate or trust my self with decisions. I couldn't tell if what I was doing was what I wanted to do. Its a very odd feeling. Knowing youre reading something out and hopefully saying what you see but not actually being able to compute what you hear yourself saying!! I can't put a finger on it as a symptom. It doesn't have a box but its so hard to push through. Like a fog in your head that eats away at your confidence. I needed to take a break and work out what Morris will let me do these days. In the year since we caught up last I made the new fb site...life after acoustic neuromas. I wanted to make something that was a platform for being optomistic and supporting each other on how we live now. Its taken off nicely with people contributing which I love. So thanks! I wanted to talk about hearing today though. Or the lack of! Even now. Living with single sided deafness tugs at my emotions and frustrations and seems to be a side of a battle that doesnt want to lose. We have two ears (most of us) we have them for a reason and whilst losing the function of one..or even two for some people doesn't look like anything to anyone else. There's nothing to see, the loss is huge and takes an awful lot of adjusting.

We all know that sitting on the right side of a person helps to be able to hear them, that putting your deaf ear to a noisy area helps you to listen to what else there is. Even sitting downwind in the wind helps with hearing. But what about how it feels? I dont just mean the endless tinnitus that rings all day and doesn't let up. Tiring you out before you've even done anything. I mean how does it "feel"? Personally. It's pretty lonely sometimes. Feeling like I can't participate in coversations. Always having to nod and smile because I didn't catch all the words and can't shuffle the ones I did into a legible sentence quick enough to be part of the discussion. 

Groups are the worst and I do admit I have cut myself off from a few situations. I tend to pull back from gatherings, going out and parties, leaning toward daytime coffees with one or two people, or texting and not talking on the phone. Fair do's the silver lining is I always preffered that, but even in a cafe catching all the conversation is hard. There's just so much noise that voices get lost and those feelings of just sitting in a corner trying to listen and not be a part of it gnaw at you and bring you down.

Feeling like you can't enjoy what you did before is tough. Having to change the way you do things, alongside the balance and tiredness and other symptoms gets so tiring. I know! I feel if I say pardon too many times people will find talking to me a problem and not want to hang out with me anymore, which Im sure is nonsense but it's how it feels. So I plod on trying to piece all the bits I hear together. It makes you feel like youre not the same as others, that you can't keep up and youre not as valid. My partner rolls his eyes when he's been caught in the deaf shadow again. Talking to me whilst he thinks I should be able to hear because the room is quiet, but the noise came to the wrong side and I just didn't get the memo! Turning to say something fully unrelated just makes him laugh! That's ok. We can laugh about it and you need to else it will bog you down. I know it's not the worst thing that could have happened by any means but it's something you have to live with, mourn and learn to adjust to and that means talking about it. Here with you. So that we can all see its not just us. It isnt simple. Its not awful, but it isnt simple. I dont think a normal hearer can understand how it affects so much. Why would they? Crossing the road is a huge challenge because you can't hear where the traffic is (and prob cant balance or have depth issues!) Having your name called in a loud waiting room, answering the phone and not being able to hear the caller because the tone is too high or low, riding a bike (in this country as im deaf on the road side!) And not hearing the traffic coming until its zooming past shocking you. All such small things but totally frustrating. On the other hand... there's always an up.... I can put my good ear on the pillow and then hardly hear anything and be able to sleep like a baby! (Wonderful in hotels!) I hear some noises super clearly and often before others!! But mostly its frustrating trying to work out what you hear all the time. All I can say is, use each other for help. Share your frustrations..with other sufferers or with friends and family and let them help you it's often new to them and they want to help but they need to know how! Dont just withdraw, because you are important, valuable and wonderful and the world needs you in it too. Two ears or one or even none :) there's Life after acoustic neuromas and we have to lead the way to show it. I couldn't do it without the people around me. Real and virtual! So thankyou.