Thursday, July 27, 2017

A Different Kind Of Nightmare


It was this time last year when I collapsed on the floor unable to stand up because gravity had gone all astray and trying to get off the floor, lifting my head would make me violently sick. The feeling of how was I going to get to the phone to call for help, how was I going to get to the door to let them in?

It took many many hours to get me off the floor to lye down on the sofa once the doctor had given me a pill, and then I had a course of more for a week. It took 3 days for me to be able to move around my vicinity, I could not be left alone and during which time I had lost my hearing on the right hand side. This never came back and 90% of my hearing is gone on that side now. It took about a week before I could stand up and walk without feeling and walking like a drunk, or for more than 30 minutes without a rest or even in fact a sleep. I slept a lot that week. An enormous amount. Life has gone on and things have slowly developed.

So I write this for all so they or you can understand if my behaviour may seem or is odd, or why I might look isolated from a group I’m with, in a noisy environment, but hopefully for anyone else who has the same problems and sadly I’m / we are not alone if you look around on and deafplus. Its took a long time to start feeling me once more, its took until now to learn, adapt and be happy once more. Yeah life's not so easy, and there’s plenty of places that are noisy that I’d rather not be, or would like to be but……

I write this now, but may well updated it as I go.

What the huge problem is, the brain uses the two ears to work out what is and what isn’t relevant. Without the other ear working this doesn’t happen. So places where there is more than one noise becomes discomforting, confusing, and not pleasant, as well as not being able to distinguish speech over or from other sounds. And while people would like to hear how to describe it, its hard or impossible to advise, and wouldn’t believe it myself. Its not like putting your finger in your ear. What I need you to remember is, what is nice for me is quietness. No matter how much the gentle whistle is in the broken ear. At some point I was advised to have background noise always on to mask the whistle. But to give you an idea, background noise such as music, makes it hard to hear speech, so bars, places that do background music, or even noisy crowds, such as in busy restaurants, city centre stations, or even music in a car causes me not to hear the important stuff, or speech around me. Peace and quiet means I can communicate and listen and enjoy.

It doesn’t mean that I don’t want to go to those places, but after being in there a while you may well notice, I’ve become “isolated” from what's going on, with you / us.

To give you an idea, I was at Burger King in Glasgow one day, it was in a very busy shopping mall. I wanted a burger King though and goggle said this was the nearest one. I waited in the queue, in the noisy place feeling uneasy, but hay I wanted that burger, when it got to my turn at the counter I could hear all the extraction fans, the fryers beeping, but the person talking to me, right there in my face, I could not hear, I could not distinguish what they said above everything else. Hell all I wanted was that burger. I explained I was deaf and they had to lean right into my good ear so I could hear them. What they said was after taking the order “your not wearing an hearing aid though.” “ah I said that's a long story but I am getting one”. That was before I’d got my hearing aid, but that makes little difference now. I got my burger, I enjoyed my burger, and I found the quietest spot in the noisy place to eat and eat it. I enjoyed it and watched the world go by.

I miss music, its just not the same as it was before, filling my head with music. Occasionally I will listen to it loud, as in loud in my car, but only when I’m there, on my own. If someone else is with me, I’d rather listen to them talk to me. That is sweet, that is nice now. If we are in a car together and the stereo is on, most likely I’m not hearing what your saying to me properly, or even at all. I have found that if I use canned earphones the bass is picked up on the side of my bad ear, and that is good, that is nice, again I do it when alone and not doing anything else. The downside to this is it make the tinnitus worse on the broken side, like when you’ve been to a really noisy gig or disco, and lasts a while. But sometimes I want to enjoy music, no matter what, my undying love for the sound of Depeche Mode. Somewhere on Facebook a friend highlighted that Ride were playing in Brum. Wow I said I remember seeing them live in 1990 in Nottingham. He asked if we could get tickets and said man I have one ear working I’ll think about, although if neither ear was working and a Depeche Mode gig was on I’d buy a ticket anyway. Two days latter Depeche Mode announced 3 new dates in Britain. I still haven't brought a ticket, but know I so desperately want to go, I so do. Well I sit here thinking about it still, I went to a Pet Shop Boys gig, mainly because I’d bought the ticket before all this happened, and yeah I enjoyed it, so there you go….

Learning to answer the phone with the left hand and then do what ever else I was doing with my other hand is odd. It still is. Holding my phone with my right hand is what I did, but not any longer.

Meetings with more than two people are awkward. I always have to look around and find a seat that I think is going to aid my directional hearing, or decide quickly who I think will be the focal person. If there is cross talk I just get a whole jumble of words that my brain doesn’t distinguish, it just gets overloaded, back to the very first point, your brain uses the two ears to distinguish what is worth listening too.

And this is the same as meeting with people, for dinner, entertainment or otherwise. I check the seating quick and usually put my broken ear away from the group. So you’ll find I sit at the edge of a table with the good ear facing the people I want to talk to, or may even ask if we can swap places, or may not and then you will or will not notice I struggle to catch everything you say. If I look lost or distant just ask if I’m okay. If I’m asking for you to repeat yourself, its probably not your fault but the fault of the surroundings. I probably want to listen, just can’t and have had enough of asking you to repeat things over and over and have gone into my own day dream world, or are watching the world go by. Its not that I’m not interested.

Similarly if I go to the cinema you’ll find now I will head to the right handside as you walk in, so I hear from the centre of the cinema. Man do I miss surround sound, be it at the theatre or in my own home.

So I got an hearing aid after six months and a lot of pushing to get one. Now I understand what and why the ear doctor said he didn’t think it would help, and that he’d rather get the good ear working with an hearing aid to 100%. For me though it was important to prove it wouldn’t work, well I didn’t want it to prove that, but I wanted to try, I wanted to put this right. But for me the balance in my head was missing. To best describe it it feels like the right hand side of my head is in space, no gravity, only the sound of the gentle whistling of the darkness of nothingness. The hearing aid I have works for me, after several reprograming visits and perseverance. My hearing aid is comfy, light and I don’t notice it. It does fall out while eating, while my jaw goes up and down, so please have some patients with me if you see me putting it back in over and over. And while at first it seemed to give me good hearing, that sensation did not last and it became apparent that speech in particular was distorted and broken. The audiologist was patient and inviting for me to return as many times as I needed to get the best out of it, and understanding that in my situation, unlike when you normally go slightly deaf, that it doesn’t just work from what the computer says but from what I tell them I am actually hearing. And the tests in the quiet room are no good to my real life situations, so its now programed and I go for a walk in the town centre, go to the noisy places, the quite ones, and then go and have it reprogramed and repeat.  The distortion that the hearing doctor originally advised the hearing aid might cause, is now obvious and I have my hearing aid so that the speech frequencies are turned right down. The distorted speech was distracting to my brain. It did not help, in fact as things went on it got worse. But sounds do. Sounds of movement, birds, wind, things being dropped and banged, help. They help my brain decide better where the noise has come from. The professionals call it localisation.

If it doesn’t look like I’ve heard you, take it I haven't.

Of course there is a plus to this. If I’m trying to sleep in a nosy place, I bury my good ear in my pillow and pizzazz, I can sleep to the sound of the whistling instead. This does have the issue of if I’m in this position and the alarm clock goes off, I’m none the wiser. Luckily light wakes me easily, so my alarm clock is a picture clock and the display lights up, which causes enough light to usually eventually wake me up.

So with all this my balance also went, I take some pills which helped greatly after a week or so of taking them ( and still do to allow me to drive). Hey my body became connected to my legs once more. And apparently I was lucky, for a lot of people they don’t work or seem to have no effect. Still occasionally I will be walking and suddenly veer off, and will automatically correct my self, sometimes it is slight, sometimes it is big. At first a lot of things were difficult or I just simply could not do, concentrating on walking was awkward enough. Now though, I can still snowboard, although I think this is down to my good ear being at the front of my snowboarding position. Okay so I’m not as good at it as I was, but I can still do the sport I’m passionate about and enjoy so much, to allow me to go to the Alpes, enjoy the winter environment and the mountains, snow and sunshine and the vigour of coming down a mountain with a smile on my face. I can still swim, and that is oddly nice due to the weird sounds you get in an indoor pool, or under water. Cycling is really odd but has got better and is something I loved doing. At first it was just madness of off balance and then a car would come past and scare me witless as I never heard it coming (my left ear works), and my balance was off. Now though I enjoy cycling once more, I can do it, again it has taken perseverance to get the most out of it, the outside world is great. I can even climb ladders once more. Not the incredibly tall 3 tier ladders, nope I’m not up to that but I can go up ladders. And I can climb the rocks at the seaside, not like before, but I can do it in a wobbly, unconfident, fashion, that you do not even realise is happening in my head. Parking my car has gone to pot. I can’t seam to do it quite right anymore. I used to be able to get in the smallest spaces, now I struggle end off. But I have gone from not begin physically able to drive, to being diagnosed with Meniere's Disease and told I could no longer drive for the immediate future, to getting my licence back, to not enjoying driving as everything was out of balance and off sided to loving it once more (took a lot of practice). I even managed to drive all the way to the French Alp's again, something my parents doubted I’d cope with doing, but I did it for a family holiday this year.

Maybe the oddest off balance though is if I lie down, mainly on my back. If that happens, I become sea sick. The room spins round and round, and I feel awful for a while. The last camping trip I went on I slept on a airbed which meant I slept on my back. Every morning I got up it was like I’d had twenty pints. Not practical, and not pleasant, but it passes. And I have the same effect when mending cars, from the underneath and I’m on my back. And I used to be able to work on cars in the dark or with my eyes shut and do it all by feel and touch, but this doesn’t work anymore, this is odd, and makes repairing cars a lot tougher. I have started doing it though once more, it takes longer and a lot more concentration but I can do it again. And I have been to Blackpool Pleasure Beach, with a friend whom I trusted, and understood about the situation and that if I got in trouble after a ride, they would stay with me, and not leave me. As it happens I was okay, I dropped my hearing aid in the pouring rain at one point which then made me disorientated whilst trying to find it, hey that happened when putting my hood it when it rained hard as it does there, and I forgot momentarily I was wearing it. Hell I panicked as I searched for it in the deepening wetness of the stairs I was on.

And while going through all this I was tired, I would get so very, very tired, probably from my brain trying to work harder on my balance and try to concentrate on what I was trying to hear. So even keep keeping the house clean, putting the hoover around was a big tiring task. But not so now, I can enjoy hovering and dusting once more, I can.

The human body is amazing. Its took a long while to adapt, I might not be quiet the same as I was, but recently I’ve become happy inside myself again. I want to go out, I want to be part of the world again and not hide away in my comfort zone of my house. Of course for those who know me, know I never completely stopped. I used this slow time, of staying at home to get my garden growing and now it is fully blooming great, with wonderful flowers and a quiet place to relax. Did I mention how nice, quiet places are now in my life?

If your reading this and have the same or similar problems, don’t give up. And for those who know me, don’t give up on me, my spirit is returning more and more, day by day. I haven't given up, but I have my moments I need a hug too.

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