Hearing Difficulties -Possibly EDS Related?

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Yup, those are my earbots!

I haven’t actually needed these for the last while. When I’m at a certain level of hearing I get used to it and end up not wearing them unless I’m having a really bad hearing day (yes, it goes up and down on occasion, which is frustrating!) but my hearing is gone really very crap again, I’m not hearing Keith when he is talking to me and I’m missing things, so these ugly boys are out again. :/

I have had severe bilateral hearing loss and consistent ear trouble since the age of 7.

I don’t talk about it much as it embarrasses me and I just get self conscious if I know that’s what other people are thinking about when they talk to me, plus they always want to test my lip reading, which is a nice party trick but isn’t that easy to do on the hop, as you must consider all context of the conversation, you also must be somewhat used to the person you are talking to. I find it takes me a little time to get used to talking to someone new before I am comfortable enough around them to ‘get’ what they are saying and it takes me even longer to get used to a bearded man. Everyone pronounces things and moves their mouth differently. I find a tiny bit of tone or sound helps me also as that is how I’m used to using it.

On my last hearing test, which was over 6 or 7 years ago now, showed that my left ear has only about 15% hearing remaining and my right has about 35% hearing. It certainly feels as though it’s a lot worse now!

It is called SensoryNeural Hearing Loss, caused by underdeveloped Eustachian Tubes that are dysfunctional, middle ear disease (where the 3 tiny bones in my ear behind the eardrums are wasting away) and also Adult Otitis Media.

Hearing problems also run throughout my dads side of the family anyway.

My symptoms throughout my life include:

1: Constant fluid build up in the middle ears (called glue ear in kids) causing wastage of the middle ear and mastoid bones and ‘leaky ears’, adding to the hearing loss accumulativly over the years and will probably continue to do so as I get older.

2: Reoccurring ear infections causing further fluid and damage.

3: Shooting sensations of random sharp pain in the eardrums.

4: What feels like spasming of the eardrum or close muscles.

5: I produce little or no earwax which serves to protect and moisten the ear, so my ear canals are narrow and raw with dry, flaky, very itchy inner ears.

6: and probably the most annoying – are clicking, crackling and ‘ocean’, sounds coming from deep in my ear. (Like if you put your ear to one of those seashells, I could never actually hear that!) I sometimes hear my heartbeat clicking too, especially if I lie down and also sensations of ‘breathing through my eardrums”, it’s the only way I can describe it. As I breath, I can hear and feel my breath escape through my eardrums causing sharp pain and the feeling of movement as I do so.

This, according to my ENT surgical consultant, is because my Eustachian tubes are always closed and dysfunctional. Sometimes they open up like normal people’s ears and the feeling is so alien to me because I’m simply not used to it that way!

Looking back now, I would’nt be ¬†at all surprised if it was somehow associated with my EDS.

I have had 12 operations on my ears under general anaesthetic which have scarred my eardrums irreparably making them very thin, fragile and they rupture very easily.

I have worn hearing aids since the age of about 12. I learned to lip read from an early age to compensate for what I was missing in school etc. and I learned some Irish Sign Language in my college years (not fluently at all!)

I was diagnosed as clinically deaf at the age of 19 but it’s not like I can’t hear anything!!

I have a lot of difficulty, especially with background noise, I have dropped notes while listening to music because I can’t hear some frequencies, or in a group situation, where I’m speaking either too soft or too loud because I can’t determine my own volume! but in general, if I’m one to one with you, I’ll watch your mouth and catch a lot of what you’re saying! (Please don’t mind me if I look like I’m checking you out, I’m not, really!) :p

I have been referred back to my ENT surgical consultant now so hopefully I wont have to wait too long to see him to see what he says and what the updates are.

Apparently I hide it well, I dunno though, I ask “WHAT”? A gazillion times a day like!! :p
So, have you any hearing difficulties that may or may not be associated with EDS or your particular chronic illness?

Let us know and share your comments below. ūüôā

Thanks for reading, and as always, feel free to share – Lette (Fainting Goat)

Informative Disability Links in Ireland

Sorry about the delay in updating recently, I have just been lazy to be honest!
I found a comfy place on the sofa and usually hibernate down in the sitting room away from the computer now, choosing to use the phone or the iPad and I hate blogging on anything other than a proper keyboard, thing is I have lost all motivation as a result of this  so I decided to kick my own but into action today, and here we are! 

This is me, bursting with motivation…

yeah, right! :p

I wanted to update you on what is going on during this, what I can only call; Process of transition! as there may be people out there that may find themselves in the same situation as me, having to now use a wheelchair or living with any disability and not knowing how to adjust or how to go about getting the information that they have rights to and deserve. So, if I am living the experience, let me share it and help those who may not know what to do or where to go for these things.

This thing came out of nowhere for me, took a little while to get my head around and once my husband and I got our heads around the new situation we find ourselves in and the fact that I have a research based background, I went about doing exactly that, researching the poop out of everything got to do with our new situation and how we could adjust.

Here I highlight some links I found full of information regarding a new disability, just click on the blue words to be taken directly to the sites I am talking about. 

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Firstly, DONT PANIC! You will get through this, there are supports, family, friends, doctors, there are ways and means of finding out information, just dont be afraid to google information (all site links I have given here are legally legit! be careful what you find and read online, be sure they are from legitimate sources.) /Or if you are not interweb savvy then RING or JUST ASK! Do not be afraid to ring your doctor for help, my doctor has been great to share any infrmation he knows or finds.  Call places like Enable Ireland, other disability centers or even Citizens advice or social welfare regarding financial help and legal entitlements, if needed. These places are here to provide you with information, use them.

I have a friend who has been in a chair all her life and she was a wealth of information to me, she also wrote a book about her experience too, so be sure to check it¬†out, It is called Dont Tell Me I Cant, by Leigh Gath ¬†ūüôā Cheers muchly, Leigh ūüôā¬†

I started out my personal research by reading about actually having a new disability,¬†methods¬†of coping or managing in this new situation. I openly spoke about how I felt on forums and took advise from other peoples experiences living within Ireland, ¬†knowing you are not alone can help hugely and I found EDS Awareness Ireland a huge help, Thanks folks, please be sure to check out their page HERE ūüôā¬†

The first main¬†obstacle¬†I came up against was getting myself a wheelchair or a device to help transport myself. This is not automatically given to you via your Doctor or hospital, so the first thing I did was ring the Irish Patients’ Association who are fantastic on giving advice to anyone who is a patient, either¬†publicly¬†or¬†privately¬†in Ireland. They are also fantastic to discuss problems with treatment within the health system, so if you feel something is not going correctly with treatment or if you have or are being treated¬†inappropriately¬† talk to them.

From here I was led to Assist Ireland.ie and The Irish Wheelchair Association which provide lots of information about the types of mobility devices, aids and entitlements you can get and how to go about getting them both publicly through the HSE and privately if desired. Also information on Disabled parking permit and other entitlements and services.

Ring your local health nurse, which will usually lead onto a referral to an Occupational Therapist and or Physio and perhaps to a local Social Welfare officer to help financially or to apply for any benefits. This is a great start to get the ball rolling locally within your home, community and your immediate change of circumstance. 

Remember, there are supports and help, just dont be afraid to look and ask for these things ūüôā I hope some of these links can help you too ūüôā¬†

The news with myself recently is just trying to adjust to this new lifestyle. We are having regular visits from the Occupational Therapist and sometime in the next couple of weeks a motorised wheelchair will arrive, allowing me to get out and about more, locally, without self propelling or the Hubby having to push me, it would be nice not to have to talk to someone behind me all the time while out for a roll!! ūüôā¬†

How cool would this be? Click on the image to read the story behind the photo

As of yet, I dont know what kind it is, or if it is going to be any way portable, so for now all we know is that I will be working between the 2 chairs as they are deemed appropriate. 

I have begun my Physio in my local health center, which is great, but slow! I have a specialist letter to state that regular physio is not advised for me as it may aggravate the joints, muscles and pain even more and so pool therapy is recommended about 3 or 4 times a week for me. He is looking into where he can get me in for pool therapy as they do not facilitate it directly at the local health center so it may take weeks or months to start properly.

He has ordered a walker with arm rests for me to practice just standing straight up out of the chair as he thinks my legs are not ready for the pool yet and that getting me to stand even for just a few minutes a day will help maintain some bone strength, muscle tone and even help digestion. So until my own walker, measured to my size, arrives, he has lent me one to practice in the meantime. I am doing that when I am able, cant say I am seeing any progress yet but it is early days yet!

Other than that, I have my Rhumy appointment at the end of this month, expecting the zoomy chair in the next week, hopefully and noticing that my arms, chest and latisimus muscles have become very solid!!! Even in this short time. I definitely feel stronger in my upper body and I have even stopped napping during the day like I used to, all the time! It feels good, I do feel it will be super easy to put on weight in the chair though, so I have to watch that. 

…with a sweety and ice-cream obsession, thats gonna take time! :p¬†