"Keep Going. You Got This."

I began this blog, not only to educate friends and family about my condition, but to share my experiences with others who may be in the same situation; to give them the comfort of knowing that they are not alone.   For those reading it for the first time, while I encourage you to respond with your experiences and advice, I hope that you will read from the beginning and not respond until you've caught up with me on this adventure of discovery.  I am learning as I go.  

You haven't heard from me since June of 2016.  (Previous posts are listed from the bottom up to the right.  When you click on a date, you must scroll down to read the first one in date order.)   Due to recent circumstances I have reconsidered my statement early in this blog that I believed the bilateral balance impairment was worse than the bilateral hearing impairment because there is technology to assist with hearing.

If you've followed this from the onset, you know that I went from one all-in-the-ear aid to one in each ear to replacing one with a cochlear implant after sudden hearing and balance losses within a three year period and rapid degradation of my cochlea.  The technology is wonderful but technology often fails.  Currently, my one remaining all-in-the-ear aid is once again dead and out of warranty.  Because of the expense, I have put off investing in new technology that was released in October for a device that is compatible with my C.I.  Now, I must take the plunge. (See update below.)

By "compatible," I mean that I will be able to stream via bluetooth with both so that I can hear in stereo.  The C.I. has the ability to tune out background noise for better hearing in a crowded restaurant or party, etc., but a regular hearing aid worn in the other ear does not, making that function on the C.I. irrelevant.  With the new compatible hearing aid, I will be able to tune out background noise on both. I'm excited and anxious but must wait for my audiologist appointment in a couple weeks to place the order.  (See update below.)

Also, due to illness this Fall and inability to do my fitness classes and fitness walks on a regular basis, I have had a setback in my balance.  I had trained my brain to compensate for the loss of the normal neuro-paths from my feet and eyes to my balance center.  Without practice, it has forgotten it's training.  I am back to square one with my therapy.

As I've mentioned many times in past blog posts, mine is an invisible illness that is difficult for others to understand.  It has robbed me of my independence, caused me to leave a job that I loved mainly due to chronic fatigue and inability to drive distances or in unfamiliar areas, or after dark, and, thus destroyed my self-confidence.  Thankfully, I have loving friends and a few family members who try to understand and assist.  Sadly, others seem to have forgotten that I exist or, perhaps, I am too much trouble for them.

It has been suggested that I need to ask for what I need.  Constant requests makes one feel "needy" and can be embarrassing/demeaning.  Foremost, I need you to remember me; that I am housebound from dusk to dawn; to offer to pick me up to go with you.  I've missed so many street fairs, concerts, plays, flea markets, events, especially around the holidays, that I used to attend alone or with others and can no longer attend alone.  I need you to understand if I must decline due to fatigue but please don't give up on me.

😊😊😊

I wrote and never published the above earlier this year.  Meanwhile, I invested in the Phonak Link hearing aid for my non-implanted ear and love it!  With the remote control which hangs around my neck I can control the settings for both ears at the same time and answer my cell phone with the touch of a button on the remote.  The phone doesn't even need to be at hand, so long as it is in bluetooth range.  In some ways it is even better than talking face-to-face because your voice is actually right in my ears...BOTH ears!  I can also stream music with bluetooth or a cable through the remote, adjust the volume, and hear it clearly in both ears.

On the downside, my balance has not improved.  Since the illness that kept me off my feet last Fall, I haven't gotten back to my Silver Sneakers classes, or daily walks.  I know that I must do that as I was cautioned early on to never stop moving; that my brain must exercise what it has been taught.  My exercise buddy is back from her many summer excursions and will be my "cheerleader" to encourage me to join her in class.  Her motivation is important.  The class is not only beneficial physically, but psychologically.  Without my friends, I go weeks without any human contact other than grocery clerks, repairmen, doctors, etc.