I JUST WANT TO BE OKAY

Day by Day With My Adrenals

“Someone asked me what are my “Favorite/most useful coping skills – for pain, depression, and all the silly side effects that come with having chronic illness?””

Hmmmm?  Do I have any coping skills, or do I just roll with the flow?  My first thought is that I am only able to cope with my illnesses with the help from my medications.  Other than that, I don’t handle this “chronic illness stuff” well at all. But, I have made it  through many a bad day by remembering some basic things:

  • Accept what you have and don’t argue with God anymore…I don’t mean give up…just accept it

  • Accept help from the people who love you

  • Accept that your HUSBAND and kids are as frightened as you are about this new thing called “chronic illness”

  • Help your family understand what you need…I don’t mean a glass of cold pop or a sandwich…You need to tell them you need rest, understanding , companionship…

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Life with Multiple Sclerosis

Life with Multiple Sclerosis

lisaslunacy

I have lived with my Multiple Sclerosis diagnosis since 2010 and I still haven’t found the right words to explain what it’s like to others. I found the post below and was in tears while reading it. It says everything I’ve always wanted to say and couldn’t. I thank Penelope for giving me permission to share this and for somehow finding a way into my mind and heart and expressing my feelings so eloquently. Keep up the good fight, Penelope!


To whom it may concern: an open letter about life with Multiple Sclerosis

By Penelope Conway

To whom it may concern:

There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will help open your eyes and heart to what life is really like…

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Note in a Christmas Card

Dear Friend,

I was so surprised to see you at the store the other day!  When I said you looked so good, you starting crying.  I didn’t know. I’m sorry. I remember when you got sick so many years ago, after all this time I just assumed you were better.  I didn’t know.  I remember that we used to talk on the phone a lot and when we would bump into each other at the grocery store we would stop and gab for a few minutes, and I remember those baseball games when the kids were little, it was always so hot!  I thought our lives had just changed because the kids grew up, I didn’t know what you were still going through.  Like the old saying…”out of sight, out of mind”, I guess.  Hadn’t seen you at church for a long time, but you told me it is hard to get ready and get there.  I didn’t know.  You told me you seldom drive or go anywhere.  You told me that both boys moved all the way to Denver, I didn’t know that.  I didn’t know you had to quit your job and you haven’t worked since 2001.  I didn’t realize you have been ill since 2001, how could that be?  After siting with you for a while I learned about your illness.  I didn’t know there was no cure.  I didn’t know how your illness has totally changed your life.  I didn’t know your husband works three jobs, I guess that’s why I never see him!  I didn’t know that most of your friends have stopped calling you, just like I did.  I admit that I stopped inviting you to things at my house because you often declined or cancelled last minute. I didn’t know you were that sick.  You look so good, like nothing in the world could be wrong.  I will never say that again to you.  Instead I will ask you if there is anything I can do for you. A ride to the doctor?  Pick up your prescription? Take the dog to the groomer or for a walk? Come over and watch TV and help you with your laundry? I am so so sorry, I just didn’t know.

Love, Carla