"Your Voice Hurts My Ears"

I want you to close your eyes & imagine you're in a room. In front of you is a blackboard with someone stood by it. Suddenly, they begin to drag their nails down the blackboard! Likely this triggers a response of pain in your ears, you quickly cover them as you begin to grit your teeth, cringing & beg the person to stop!

If that doesn't set you off, then imagine you're sat round the dinner table with friends & someone accidentally scrapes their knife or fork on their plate, causing you to wince due to the sudden shot of pain ringing through your ears from the high pitched sound!

Keeping your reaction to that sound in mind, I want you to now listen to the noises that are around you at this very moment; is the TV on? People talking, singing or even whistling!? There's a Cat meowing or perhaps you can hear a dog barking? Maybe it's your own dog. Do you have the radio on or listening to music? Maybe it's a nice day so you have the window open & you can hear the birds singing, cars driving down the street, people walking & talking, children screaming as they play. Are your neighbours doing some jobs?; cleaning the car with a power washer, using a lawn mower. Maybe there's even workmen on the street or near by & they're using noisy machinery!

Now imagine having the same reaction you do to nails on a blackboard to every single one of the sounds around you, in fact, you have that painful reaction to almost every sound you hear! I bet it would make you want to never leave your house & live in silence for the rest of your life just to avoid the pain!

Congratulations you are someone living with M.E!
Since most people think M.E is simply being "just tired", they are surprised to learn that sound sensitivity is a huge part of this condition. This sensitivity is just as varied in each person living with M.E as every other symptom. Some find that they can cope well with noise, only having slight reactions to certain, louder, maybe more high pitch sounds. While those with Severe M.E, which is about 25% of us, have no choice but to live life in a completely silent room wearing ear defenders because even the tiniest sound is too painful to bear!

Personally, from being a child, I've always had quite sensitive hearing, my parents are always amazed at my ability to hear even the quietest of sounds; not to brag but if you can't find your phone in the house & it's on silent, I'm your girl! Just ask my mum!

Through my teens my sound sensitivity became a lot more heightened, interestingly, this is when symptoms I now know are associated with M.E began to develop. Now as someone classed as having Moderate M.E, I struggle daily with sound. My phone & iPad are on constant silent, I rarely listen to music or if I do, it's not for very long & I don't have it loud. The TV has to be on a low volume setting or I can't stay in the room for long.

Making something to drink or eat can hurt my ears too; the sound of the spoon as I stir my tea, the scraping sound my knife makes as I slice my toast or sandwich on the glass surface saver. Putting any cutlery, plates or bowls down on the side or getting them from the cupboard or drawer that creates a sound that makes me cringe & shush these things as I go! I struggle to stack or empty the dishwasher & I have to leave the kitchen if someone else is doing it due to the clattering pots! Oh & don't get me started on the pain my ears suffer when getting a pan out!

Going to the cinema is a painful experience for my little ears, which is why I only go when I really really want to experience a certain film on the big screen & the film is one that I know will be worth it. For example: the sensory & sound overload I experienced after seeing Insurgent what awful! I came home & had to lay in a dark silent room for a number of hours. But the film was worth any adverse affect to me.

Some sounds not only cause pain, but I also find being surrounded by constant noise can make me feel anxious & very irritated. One person's voice, (especially if they're a loud speaker) or even my own voice can simply be too loud for me some days, so being in a room with a number of people or at a gathering surrounded by a large number of people isn't fun at times.

With everyone talking, laughing, children screaming or crying, background music, the constant buzz of noise can seem deafening. The reaction this gives my body is not a nice one to experience; I have to stop myself wincing as my ears ring with pain so no one notices, my head aches & becomes fuzzy as my brain, overloaded with sound, tries to process what's going on around me. I also can begin to feel irritated & anxious as the adrenaline starts flowing, giving me the feeling of wanting to retreat to somewhere much quieter.

Going to shops or a café can be difficult. Even if they're not busy, there's always music playing in the background & in a café, there's the added noise of the machines to contend with. As a person with M.E, getting out can be a big deal, so finding somewhere to rest while out shopping is essential. However, when finding a place to rest then having to deal with added noises of being there, it can actually make you feel more drained than you were before you sat down.

I remember a while ago, discussing this with a few of my friends who have M.E at a similar level to myself, I related how I'd managed to get out to a shop & then decided to go to my favourite café for a rest & a drink, only to find myself feeling even worse afterwards due to the noise there. Their responses made me realise I wasn't alone. Although that made me feel relieved in a way, it also made me feel sad that others experienced this too.

I came to the conclusion that, if my circumstances ever allow, I'm going to open a chain of café/bookshops, where as soon as you enter, you order your food & drink & then go through a sound proof door to another area with comfy chairs & sofas, blankets, pillows, & tables that are surrounded by books. There's no noise, no one talking loud, no background music playing. All devices will have to be on silent. It'll be a place where people with M.E & other chronic illnesses can come to simply rest & enjoy the same peace they can get at home, while recharging their energy levels ready for whatever else they may have to do while they're out. Utter bliss!

Sound of Silence
A healthy person may be wondering; if being around people or getting out causes such a reaction due to the surrounding noise, then why bother putting yourself through that?

Simply because as people who have had most of the things they loved to do brought to a screaming halt because of this illness, because our lives have undergone a drastic change of direction, still making a determined effort to live, get out whenever possible & be around people, shows that we still want to live & that we won't give up fighting or allow M.E to get the better of us! We cherish every moment we feel well enough to get out & are able to take part in life. Many of my fellow M.E warriors do this while rocking ear defenders or ear plugs, which makes the outside world a little less noisy & slightly easier to cope with.

Sound sensitivity is only one of the many things my lovely fellow M.E warriors have to deal with on a daily basis & yet they do so with a smile on their face while encouraging each other to keep going. You are an amazing group of people, doing amazing things & one of the best things I've had come out of getting this awful illness!

On a side note, before I finish this: This blog has recently reached 9,000 plus page views & I just want to say a HUGE THANK YOU for all the support you give me. From reading my posts, to retweeting  or sharing the links, giving them a +1 on Google or leaving comments! I am so very grateful to every single one of you & you all make the effort of writing these posts really worthwhile.

I hope today is being kind to you all & you're taking care,

L x