Penny Powell
Penny's page
Fundraising for RNID
Story
In May 2016 I lost the hearing in my right ear very suddenly. It was devastating, terrifying and disorientating all at once! One minute everything was normal, the next it had gone. I thought at first I just needed to swallow or yawn and it would come back, but it didn’t. I visited my GP and after several tests was rushed into hospital where after numerous hearing tests, blood tests & MRI scans I was told I had Sudden Sensorineural Hearing Loss, (SSHL). I was lucky as nothing dreadful was found; there wasn’t a tumour, I wasn’t suffering with a neurological disease such as MND or MS, I wasn’t ill. My consultant said that it had probably been caused by a virus but he couldn’t be sure. It’s classed as idiopathic.
There really wasn’t much doctors could do for my condition once everything nasty had been ruled out, but steroids were believed to help so I started a course and then it was a waiting game.
Over a period of approximately eighteen months I regained 43% of my hearing. When it first happened I was classed as profoundly deaf in my right ear, now my high and low range frequencies are not too far off normal. Unfortunately I have lost my mid range which is where conversation is, so I really struggle if there’s any background noise, if people turn away from me, if I can’t see a person’s mouth, or I position myself with my deaf side closest to the person I’m talking to. If I’m not tuned into someone’s voice I often miss the first thing they say to me and I say pardon an awful lot. I can cope with this, but sometimes when somebody has to repeat something to me a few times they more often than not say “oh it doesn’t matter”...it does matter, it matters more than you’ll ever know! Don’t isolate me further, deafness has already done that to me, include me, even if you have to say it a couple of times...please. Unfortunately I’ve lost a huge amount of confidence, not that I had bucket loads, and avoid social gatherings as I find them so difficult to cope with. To the friends and family I’ve let down I can only apologise.
As a consequence of losing my hearing I’ve also been left with tinnitus which means I have a constant buzzing in my ear along with a feeling of pressure and I have no idea which direction sound is coming from. Every so often I hear beeps too, which is like having R2D2 talking to me in my head! This is actually worse than the hearing loss, it’s exhausting and extremely debilitating. I have a hearing aid, which I hate but it really does help with the tinnitus and I can switch background noise off which does help when I’m in a noisy environment. I feel extremely self conscious of it though and wear my hair over it or go without if I’m out running or have my hair tied up. Very few people have seen it or even know I wear one. It should be like wearing glasses but it’s not!
Not many people are even aware that I suffer from hearing loss because I try to disguise it, but I’ve taken the plunge to tell people about what happened to me, and the first steps to help raise awareness of my condition by running the London Marathon in 2019!!! I want to raise money to help fund research into hearing loss and help support people who suffer from it. I’m unlikely to regain any more of my hearing back, but it would be fantastic if one day a cure or treatment could be identified. Action on Hearing Loss are an amazing organisation who I found on social media and who promote all the support networks that are available, they help people come to terms with their hearing loss and don’t limit or label people.
Exercise helps me enormously with the anxiety that tinnitus can cause and the frustrations of hearing loss, although if the weather is very humid or hot the noises often become too much. I can only describe it as sensory overload with exaggerated sounds coming from every direction. I try to lose myself in the scenery, in the footfalls and put the world to rights chatting with my running buddies, as long as I run on their right side. However, occasionally I just want to tear my own head off and I have to stop...and sometimes have a good cry.
I’ve never run a marathon distance despite always aspiring to so it’s a huge honour to run for Action on Hearing Loss, although I’m already worrying that I’ll become overwhelmed by the noise that will surround me; I’m hoping the crowds and support will spur me on as I’m determined to get to that finish line!
If you can help by donating I’d be incredibly grateful. And please send me messages on April 28, or come and cheer me on, I’m going to need as much love and encouragement as I can get!
Thank you for reading the reasons behind my choice of charity and for taking the time to visit my JustGiving page xxx
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