Sunday, February 26, 2012

The mind games ALS can play

Last night was a very emotional night for me as well as my husband. I am usually a very positive person but every now and then I to have my moments to where this disease gets the best of me for no reason. John and I were talking about the good ole times with our friends and then it hit me that many of them know I have ALS but haven't seen me to see how this disease progressed. This disease does not able me to do things that I could do before. Before we had this disease I could do my hair and put on my makeup. Now if we go out makeup and hair isn't an option. Oh I guess John could put it on but lets face it, he is a guy that doesn't know much about the girl things although he tries and does well. What I am getting at is with this disease I don't feel very pretty or attractive. This disease plays tricks on your brain and makes you feel less of a person than you already are. As a person you want to feel good about yourself physically, mentally and yes spiritually. Sometimes this disease makes you feel like you are worthless physically, mentally. You have to sit back and take time out and look at what you do have and really appreciate what life brings. You also should take time and really look at yourself and think of the positives. No one said having ALS would be fun or that you would be beautiful every day. Life in general never said that either. So why do I feel this way at times? It's the brain playing mind games with your emotions. Here is how I/we handle this. Share your feelings and be honest. Think of the positive things in your life and focus on what you can do and not on what you are no longer able to do. Focusing on the positives will allow you and your partner/spouse to work and get through the tougher times. Also communication and trust is very important in all relationships but when you add in the mix a disease it is more important to keep communication and trust going. Last night my husband reminded me that he is in this marriage and even though my face was covered with tears and many shades of red. He loves me no matter what and will be with me through the great times and the tougher times ahead. So when you're down remember you are in control of you. You may have ALS but as long as you keep positive you will never allow ALS to take control of you. So look at yourself and know that you are beautiful.


  1. Robin,
    Sounds like you have a great husband! I grew up very much a tom boy and really don't see myself attractive or pretty, but remember it is our inner beauty that counts. That is what our husbands see. God made you a very special person on the inside and out and He loves you very much!

  2. Robin,
    My best friends boyfriends dad got diagnosed with ALS about one month ago and he isn't suppose to make it to Christmas. But the boyfriend is like a brother to me! I know how he feels because my dad died one year ago. But of a heart attack. I really want to be there for him and his twin brother but what should I do?