I’m still deaf

Standard

When I don’t have my speech processor and coil on. – That’s the outside bit.

So I can’t hear

  • When I am in the shower or bath or washing my hair. So no listening to the radio in the bath.
  • When I have wet hair.
  • When swimming
  • When I’m caught in a downpour with no umbrella or hat, then I need to take it off and put it somewhere safe.  A light shower is fine,  major rain, no. You have to be careful round water. Speech processors and water are not friends.
  • In bed, asleep or otherwise. Asleep I need shaking gadgets to wake me, to let me know the doorbell has gone, that the fire alarm is sounding, that the phone is ringing.  I can still hear MLM snoring though, 😦 ,  thanks to those low frequency sounds.
  • In bed and not asleep. No listening to the radio while going to sleep. Conversation in the dark? heck no. Sweet nothings? “What did you say dear? Put the light on, let me get my hearing gadget….” The moment can lose it’s magic. 

All of these are the same as before when I wore two hearing aids, apart from the wet hair washing thing and getting caught in the rain.  With my hearing aids I could wear them for some non sleeping bed activity 😉 but the whistling is rather annoying- apparently but not for me as I could never hear it. hah!

Because of these I can see the attraction, the hope, of hearing restoration via stem cells but it’s so far in the future. I’ve heard that they are doing stuff in other less regulated countries but I prefer not to pay $$$$$ to be a guinea pig and to wait until rigorous research  and properly supervised and reported clinical trials have been carried out.  Thats so far in the future, decades.

I’m happy with my CI, very happy. I just wanted you to know that cyborgdom isn’t 24/24.

Advertisements

14 responses »

  1. “All of these are the same as before when I wore two hearing aids, apart from the hair washing thing and getting caught in the rain. With my hearing aids I could wear them for some non sleeping bed activity”

    I don’t quite understand, Mog, did you wear your hearing aids when you washed your hair? And in heavy rain? And why do you have to take off the CI for non-sleeping bed acticity?

    Also, another dumb question, can’t you wear the CI while sleeping? I was told that some people to it….

    Thanks!

    • Looks like I will have to go back and edit. No dumb questions at all, dumb writing on my part.

      No, I didn’t wear my HA when washing my hair, but I would put them in when my hair was wet. Quite often I would go out with still wet hair.

      I never worried about the rain with HAs either. Never thought that you had to and never had a problem. I was given such stern warnings that the CI does not like to get wet that I have been more cautious. On top of that we have had such heavy rain here this summer that your hair can get drenched through. I don’t recall that happening very often before so maybe I am more aware of it now.

      The coil part of the CI gets dislodged very easily, so as soon as you move you head against the pillow, or an arm or whatever then the CI is disconnected and you can’t hear. Plus my skull is still sore from the surgery and behind my ear is still very tender so it would hurt too much to lie on that side.

      Before CIs, when I couldn’t hear very much with my HAs it was often better to do without them. The benefits of the HAs often didn’t outweigh the downsides of not hearing. Now when I don’t have my CI in I find that it’s harder to cope, I really notice the difference.

  2. Thank you for writing about your experiences. On my book tour I found that talking to people in similar circumstances we had a bond. It really is important to share health issues, as well as mental health issues.

    I know that I suffered badly emotionally, physically, while caregiving for them. Thank you for putting this out in the atmosphere!

    Your self-depracating humour helps us all laugh with you, not at you, and understand your life! Big hugs!

    P.S. We are home and happy to be home. The trip back was so funny with the car noises, me opening the window to take photos, and my hubby’s hearing deficits. “Did you say, Jen, the men over in the window making widgets?”

    • Yes, it helps to share, and I hope others will benefit too. It’s good to be able to laugh with your man at his hearing mistakes, some people laugh at and not with. But you will know this.

      BTW. if there was a prize you would have it for posting the 1000th comment on my blog!

  3. I am aware that I will still be deaf when I don’t wear the CI – sometimes its nice to get a bit of peace! Didn’t realise about the problem when non sleeping bed activity though 😦 !! I agree re the Stem Cell innovation – I’m sure it will be great when its been fully trialled. Life’s too short to wait that long though – my daughter is growing up too fast for me to want to miss any of it.

    • Thanks Glenice.
      I’ve been rereading some of your early blog posts and I feel so much empathy and understaning with your comments. I read them before the CI and reading again now is so helpful to me

      Thanks, you are a star.

    • Hi Jelly

      When I have my CI on I am a hard of hearing person. I no longer feel that I am deaf but I’m not a fully paid up hearing person. I doubt I ever will be. The CI means that life is easier for me for sure but I’m still deaf inside. I reckon that will change as I get more used to the CI. I hope that I don’t forget what it’s like to be deaf and that I remember to be helpful to those who don’t hear.

    • Your link is to a cord registry site. They are asking for details of children under the age of 18months with specific types of hearing loss, and who have their own cord stored. The link says that they are looking to start a research study with two leading medical institions. I see no evidence of clinical trials there, nor can I find any on the internet. I would be looking for published, peer reviewed scientific papers. Not hearsay and a webpage asking for information.

      The Cord Blood Registry gave a link, http://www.medicalnewstoday.com/articles/120350.php# which lead to a small article on success in animal research.

      I know Deafdude’s blog. Earnest as he is, he presents no scientific evidence or links to any scientific evidence that any trials have begun. Anecdotal evidence is not sufficient. Evidence based medicine is documented and repeatable.

      http://www.medicalnewstoday.com/articles/120350.php#

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s