Not many people know that I suffer from Tinnitus. It’s not something I broadcast, probably because there is just so much else going on. I just don’t see the point of throwing this diagnosis into the conversation as well. Plus tinnitus doesn’t make me “unwell”, it is annoying and frustrating but it doesn’t make me unwell, other conditions do that. Plus when you have a list of invisible conditions adding one more of them doesn’t make any of them more believable to the casual observer. However many people wrongly assume that because I don’t really talk about my health ( other than here and my linked Facebook page ) that none of my conditions cause me serious problems. Which isn’t the case it is just that I have found over the past 12 years if I keep talking about them people become less sympathetic and then you get labelled as a moaner or that you are attention seeker. You really can’t win with long term health conditions.
I think that is part of the problem though, many of us with Tinnitus don’t speak about it because unless you are talking to a fellow sufferer people just don’t get it. Tinnitus is a subject only the sufferer understands and is a poorly researched area of medicine. People just can’t envisage what it is like to live with a sound generated from inside your own ears day in day out. So when I read this short article online I really wasn’t surprised that one in seven Tinnitus sufferers has had suicidal thoughts. Link here. Despite the fact on the whole I am able to zone out the tinnitus there are days when it is impossible and even just a few hours exposed to the continuous noise can be enough to make me wonder if it is like this tomorrow, how will I get through the day? That thought alone makes you utterly miserable, we suffer in silence, well if only we could.
My tinnitus is hard to describe it is always very high pitched continuous squeal, what doctors describe as a ringing. I would have to argue with this as when I think of ringing I think of ringing bells or telephones. I don’t think of a high pitched constant noise that doesn’t dim or fade. There is no break it is there from the minute I wake until the moment I go to sleep. It is the reason why I always have the TV going, even if I am not watching it and at night I have the radio going. Silence is the enemy because silence allows the sound to become all encompassing and there is no distraction from it. Just writing this blog post has allowed my tinnitus to increase it’s presence because I have acknowledged it’s existence today.
The only way I can describe Tinnitus to the uninitiated is, think of a noise that you find really annoying or that really gets to you be it a burglar alarm, car alarm, a child screaming, nails down a chalkboard. Now imagine that noise on a loop, the volume never decreases and there is never a break, the noise is on a continuous loop. When there is no background noise like a TV / Radio / domestic appliances running the volume increases. Accompanying the noise for me is also a feeling of pressure in my ears. When it is really bad it can feel like someone is pushing their thumbs into my ears. Other times it can feel like the air pressure is changing but the air trapped in my ears has got stuck and can’t go any further. It is annoying but again it is something I can zone out from.
The first time I experienced Tinnitus I would have been about 17. As we stumbled out of the nightclub my ears were filled with a high pitched squeal. It had been loud in the club but I hadn’t felt uncomfortable with the noise. My friends also complained of the ringing in the ears but mine always seemed to take longer to clear. The closest I have ever got to hearing that sound was when there are explosions in dramas on TV and the main character is shaking their head and they put that high pitched noise on to resemble the ringing of your ears. If only they knew that was the sound I hear all day every day, at one volume or another.
As a youngster I had a Sony Walkman when they first came out….good god I sound old. Although I did listen to music on my headphones I was much more into listening to audiobooks, Kidnapped by Robert Louis Stevenson was a particular favourite. It was one that my paternal Grandmother gave me. I can’t remember the name of the person reading the book but I loved it and it would regularly reduce me to tears in a number of places from the sheer emotion contained within the narrators voice. My parents were also very hot on the fact that loud music from headphones could cause deafness so whenever they felt that my Walkman was too loud they would get me to turn it down. So I wasn’t one of these people that had headphones blaring all the time leading to tinnitus in later life. In fact if anything I am very sensitive to noise and I am always telling Mr Myasthenia Kid to turn the TV volume down!
Having done a very quick search today looking for a link between EDS and Tinnitus many articles state there is but don’t say why. Tinnitus is given around one sentence whilst other symptoms are discussed at greater depth. That seems to be the case with Tinnitus very little research or thought has gone into it over the years let alone its connection to EDS. Obviously with EDS affecting collagen there are bound to be issues with hearing etc but many doctors even hospital consultants seem to be unaware of this issue. It can’t just be me who is suffering from EDS and raging tinnitus. In this patient information leaflet about EDS it simply gets the one word as in Tinnitus. Read it here.
Apparently I am unusual in that I have Tinnitus in both ears. I had no idea that was unusual until the audiologist told me. I have lost around 10% of my hearing and I was offered hearing aids as a way of blocking out the noise of the tinnitus but I declined. However I am having more days where the volume of the tinnitus is becoming louder making it harder to zone out from it. So it maybe something I consider sooner rather than later…if you can still get hearing aids on the NHS. Knowing my luck they will only give me one, even with both ears affected.
I do remember one of my ex friends suffering from a bout of tinnitus once and almost losing the will to live due to it after just a few hours. She did have a very low capacity for pain or anything that made her life deviate from it’s usual course. Oh and a taste for the melodramatic. Whilst I sympathised at the time I did point out that this was something that many people including myself live with day in, day out and she should really pull herself together as the chances were she would wake up tomorrow and it would be gone. I was right, thankfully hers did pass but it did make me realise that some people just don’t realise how good they have it if they fall apart at the slightest impediment to their day. How on earth would they cope if they developed a serious health condition? I have no clue but I am sure the rest of us would hear all about it.
I know I am lucky that my go to coping strategy has always been “ignore it”. Unless something is causing me pain or interfering with my life in some way I will barely give it space. I am a firm believer that acknowledging somethings gives them power over you. As in like today, my tinnitus had been at its usual level all day but it wasn’t until I read the article and thought about my tinnitus that it’s volume ramped up and I became aware of the feeling of fullness in both ears. When things have no way of getting better and aren’t a serious issue for me just getting on with life has always been my go to. There are so many things wrong with me that if I let each little thing impact me I wouldn’t get out of bed in the morning. I don’t say that to be some sort of hero as there are plenty of other people much sicker than me that are practising the same way of going about their lives. Ignore it until it gets so big that we can’t ignore it. Only pain and vertigo ( oh and low blood pressure – I mean faintingly low blood pressure) will stop me in my tracks. Everything else I will push through.
Obviously never ignore any symptoms that worsen suddenly or are new to you. If they are concerning you always get them checked out by your doctor.
There are days that Tinnitus gets me down, there are times I would give my right arm for silence. I haven’t known silence for years now, I would like to be able to hear quiet sounds without the Tinnitus masking it. I am very lucky that is really the only impact it has on my mental health. But can quite understand if Tinnitus is impacting your livelihood or passion that it would have a much bigger impact on your life than it does mine. I can totally understand why it would provoke suicidal thoughts. On the odd occasion where my tinnitus is so loud it is preventing me from hearing anything else I have had a thought flash through my mind of “shit what if this doesn’t go and is like this everyday now?” I know I couldn’t cope with that. Thankfully it has always dropped back to its normal level at some point during the course of the day.
I have no magic words of wisdom on this subject, only that you aren’t alone if you suffer with this condition.