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Sunday, July 20, 2014

Ringing and itching ears will it ever stop



I write this in one of those moments where my ears are ringing.  Well actually roaring like a jet plane engine.  I tell people that if the plane would just land and turn its engine off I would feel much better.  Yet, instead of turning off the engine it keeps speeding up and going over my head.

Now the roaring never ends.  It only gets softer and louder.  I have noticed that there are certain things that trigger me most loud music and crowded places.  The more external noise the louder the sound.  Yet, here is something that is quite funny if I use earphones and play soft music it tends to drown some of the noise.

My physician has also told me that there are some hearing aid devices that do the same thing.  Yet, he also said it isn't a guarantee.  I have another secret weapon that I use when I will be in large crowds or around a loud noisy situation.  I use an earplug in my most effective ear.  Now there are some studies that say this makes your ear more sensitive.  Yet, for me it helps with the noise.  I also feel like I hear a little better out of my other ear.  This might not be for everyone and trial and error led me to do this.

I have a joke when I put in my earplugs around friends that if I drown out everyone I can hear you better.  The funny thing that happens is there are times that I forget to move the earplug when I leave the noisy area.  It is in those moments I feel like I am losing my hearing.  The I take out my plug and can hear people better.  So I have learned not to use them in places that have less external noise.

Then there is the never ending itching.  Now I have tried explaining this to people and I often get laughed at.  Yet, I really think the itching is the tickling of the water that just wants to leave my inner ear.  I have found a simple solution it is an ear cleaning stick.  You get them at the pharmacy they come in permanent and disposable.  It also is much safer than a Qtip which you shouldn't use because of the high risk of hurting your inner ear.  The one that I use is the ototek loop.  There are different ones the thing is that you can use it to help with the itching.

This happens off and on.  At least once a week.  It seems to be more intense when I have a shower or a bath.  Seems the water from washing my hair just makes it worse.  I seem to have more of the itching feeling during those times and have to really work on keeping water out of my ears.  Yet, it subsides in a few hours.

There you have it.  The things we go through because a condition people do not understand.  Not saying that I know every solution but as I work through and find new ways of coping I want to share it with other sufferers.  what works for me might not work for you.  What works for you might not work for me.  It is a matter of trying things to see what combinations work best to make life more bearable.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.



Tuesday, July 1, 2014

Caregiver's Fatigue

I have failed to mention on my blog that my partner also suffers from several chronic illnesses.  It is amazing how we are able to be there for each other in the hard times.  It seems to never fail that when one of us is feeling a little better the other one goes on a downhill slide.  

I actually think this is caused because when the other person is on a downhill spiral the other person has to take on more work.  The adrenaline kicks in and you do things just to survive.  Then when they top the hill and start to do better the other person starts to crash.  I believe this is true if you are a person that has no illness or if you are both will illnesses.

I know a lot of us have dealt with the loss of our significant other because they can no longer handle the swings.  Chronic illnesses not only effect us but also those that we live with.  Yet, they are put on the back burner because we are worrying about making ourselves feel better.

I have ready many stories where parents have also split over the fact that a child is born with a disability.  The stress on a relationship is insurmountable.  It even goes beyond the walls of your house and into your friendships.  How can you be a true friend when your life is so much different than those that you use to hang out with?

The things that you once enjoyed are no longer enjoyable or you just cant do them no longer.  I know that this seems crazy but after awhile you start to accept when your friends and family quit coming around.  I mean who can blame them.  They are dealing with their own life and there you are adding more on their plate.

The awesome thing happens is when a caregiver is able to look past the illness and just see the old you.  When friends accept the things that you can do and make time for those activities also.  When you find one or two people that you can talk to that will listen but encourage you to see the good.

Well this week is my week to attempt to be the supporting caregiver.  My partner is having surgery and there will be alot of things that she will not be able to do for a few weeks.  Not extremely major surgery but a significant life changer.  One of her chronic illnesses is one that people know little about it is called Fuchs dystrophy.  Amazingly this is a genetic disorder that doesn't show up until later in life.  It causes you to loose your sight over time because your cornea looses it ability to function properly.  It has really taken an emotional toll on my partner because of her love of painting.  So we are hoping the surgery to replace her cornea will be a success.  It will take awhile to know the true effects.  

I just hope that when it is all said and done with we can have a nice day or two when we both feel better.  If you are helping someone that has an illness make sure to take time for yourself.  You need to give yourself a break so that you will not run out of the steam that is needed to hang on for the long distance race.  Chronic illnesses can last for years even decades. Over time they get worse and as a caregiver you need to know it is okay to take that day to do your own thing.  As a fighter you need to allow the people in your life time to rest.  As a friend or family member remember that people with illnesses are still the same inside and even if they cant do what they use to they still want you in their life.  
For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.