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Home Resource Library Coping 10 Rules for Those Who Love CFIDS/ME and FM Patients
10 Rules for Those Who Love CFIDS/ME and FM Patients PDF Print E-mail

By Charmian Proskauer


1.  Know that the illness is real! No one hates it more than the patient.
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2.  Respect the illness! When your ill loved one needs to slow down or stop, please slow down or stop. Take time out for a rest. Trying to do just one more thing is going to backfire on both you and the patient.

3.  Use your own radar! When you see the brain fog settling in, stop talking. What you say isn’t going to be properly heard anyway. Make a cup of tea for both of you.

4.  When it’s time for your loved one to take a nap, find something else to do and let her/him rest.

5.  Learn what times in the day your loved one feels better, and plan your joint activities for those times. You may need to start doing some things on your own.

6.  If you have something important or complicated you need to discuss, ask first if this is a good time to talk about it. Jumping in when your loved one’s brain isn’t on will frustrate both of you.

7.  Find fun things to do together that aren’t taxing. Reading aloud is a great pleasure – and not just for kids.  

8.  Learn “pacing” yourself in order to “stay within the energy envelope” of your loved one, at least in the part of life that you share. Simplifying your own life isn’t such a bad idea.

9.  When something doesn’t work, and when trying to keep up with you causes your loved one to crash, it’s OK to be sad and angry for 10 minutes. Then, while your loved one is recovering, figure out how to do things differently next time.

10.  Remember that “brain work” is just as tiring as physical exercise, and the ability of your loved one to do “brain work” may fluctuate. Stop if it’s not working.

Your goal is to have as much quality time together as the illness allows. You are an important partner in making that happen!

 
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