User's Manual for Dealing with MM

I thought I would offer my User's Manual for dealing with MM since I have had it for so long and I would have liked a manual for myself. Take what you like and leave the rest:

1. WTF?!? When you first get diagnosed, you most likely won't believe that you could go deaf some day. Why would God make up an illness like this?
2. You will most likely go through a lengthy period of depression, denial, hope for a cure, asking God why, depression, denial, glad to still be alive, asking God in a different way for a cure, praying more, trying to be better, trying to eat better, more exercise, less stress, and WHY IS THIS DISEASE STILL PLAGUING ME? And maybe pure hopelessness.
3. You will talk to well-meaning doctor's, lawyers, Indian chiefs, for answers, only to be given various remedies.
4. Try all the remedies that you can. Find a doctor who will listen. If you are depressed, go on anti-depressants, they REALLY do work for some (including me).
5. You will most likely lose a lot of friends. You will try in every way you can to explain it to them, and they only look at you like you are a lamp post. Accept that some people will leave and won't come back. Try to become your own best friend. That's what I did. Become friends with us here on MM, because we understand and love you.
6. Buy any book you can that helps, I bought "12 Steps to living with chronic illness". It is a wonderful book to help you cope. One of the best lines is "The emotional pain far exceeds the physical pain".
7. Some may say it isn't life threatening, let them live with it for day. It may not be life threatening but it has changed my life forever.
8. Try everything you can to feel better. Let go of people who don't get it, hold on to the ones who do. Let go and Let God. Find your life. Take a walk, draw a picture, listen to a song, watch tv, read a book, swear at God.
9. Write about it. Fill copious notebooks with your pain, loss, bafflement at getting this illness. And read it back to yourself.
10. Burn it, keep it, do whatever you need to do to feel better.
11. Find a good therapist who will listen.
12. Quit the job if the people are abusive to you. (this pertains to family too).
13. If you can still work, find a job where they love you. It is possible, I have found one. Tell them the truth about your condition.
14. If all else fails, take a nap, and wake up refreshed and eat chocolate.
15. These are only suggestions. I am not being flippant, I know this disease sucks. I just keep living and telling the truth, and asking God for help. He gives it to me in his time not mine.

Hope this helps,
A fellow MM,
Sally

 

Sally, all so true, very wise words indeed. I love #14 - if all else fails eat chocolate. That's exactly what I'm doing!

 

Sounds good to me!

 

Chocolate solves everything! (it also helps to get down greek yogurt!!).

 

Artlover, your words are both comforting and scary to this newbie of MM. Fear and anxiety seem to be my new companions. What kind of anit-depressants do you take? I have never taken them before because until this disorder entered my life, I was a very content person. By the way, I am an art lover, too!

 

I'm on Effexor and Seroquel. My MM started when I was about 11. That was the first time I lost hearing in my left ear. It came back at about 80% and noone worried. Then, I had a long spell when I was fairly healthy until 24 when the hearing completely went in that ear and the ringing started. That is when the depression really set in. I had had depression before but I didn't really come from a family that was loving and supportive, more of a pull yourself up by your bootstraps type family. So I didn't really understand depression or how deep it went. Finally I had to be hospitalized two years ago for depression. I just couldn't manage it anymore. Like you, I was a pretty peaceful person so I was baffled. I could manage on my own for years. When I finally surrendered to depression, I was able to accept medication. I wish I had done it a long time ago. Not everyone has depression with MM but a lot do. It is very common to have depression along with chronic illness. Now I feel even all the time and I am able to sleep like a baby. I wanted to share this because people don't have to suffer as long as I had to. And I really felt there was no hope. And the hearing doctors are not very good about connecting this to depression. It was the nurse at MEEI that finally suggested it to me! Not the doctors! I don't mean to scare anyone, but I think MM gets shoved under the rug. And it shouldn't. Hope this helps.

 

Thanks, artlover. Sounds like you have been brave for a very long time. Glad you are feeling more even now.

 

bump.

 

bump

 

Artlover: I like you!


One more thing- if you don't need your ears rip them out--- it will save you a lot of time, pain and barfing!

 

Okay, but where would I hang my earrings from? :-*

 

Your . . . . . Nose?

 

Ok, sounds good. My nose still hears pretty well.

 

Mine doesn't, it's stuffy like my damn ears!

 

I want to keep my sunglasses on, the lights and tv are bothering me.

8)

 

bump.

 

DITTO! LOLOLOL!