Help for People Who Care for Someone with Fibromyalgia or Chronic Fatigue Syndrome
One of the side-effects of chronic illness is the chronic changes it imposes on your life - and the lives of the people who are close to you.
Thanks to one of my loyal forum members, I ran across some real words of wisdom the other day, aimed at people who take care of chronically ill people. (Thanks, Jane!) It doesn't have to be full-time caretaking - it applies to anyone who helps you get through your life.
This is paraphrased from David J. Levy's article on the National Dysautonomia Research Foundation web page, which you'll find in full here.
Expectation Management for Caregivers
First, take an honest look at your situation and ask yourself, "What do I know about the circumstances?" Taking a little time to learn about and understand the condition will help you deal with the reality it creates.
Second, take a long-term look at things. Think, "If things stay just as they are now for a year or longer, how will that impact me, my family, and the person who is sick?" This can be an overwhelming question, when you consider financial, emotional, social and emotional issues. Approach them one at a time and try to stay logical.
This will help you get started and help you adjust your life if need be. Remember, you're not expected to shoulder this burden alone. Keep lines of communication open with the sick person, friends and family members, doctors, clergy ... anyone who can help you cope or find the resources you need.
Can you ofter help, suggestions or resources for those who care for chronically ill people? If so, please share them here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum.
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Comments
Hello, I’m Sheryl Ann Wilson - Founder & President of British Columbia’s non profit for the Okanagan Valley SOFA: Sunny Okanagan FM-ME Assoc.
How the chronic illness affects the lives of family, friends, community is a most important topic. Thus, from the leadership of the Fibro & Fatigue Centres of America Founder and the NFA National Fibromyalgia Assoc. out of California, the theme for May 12 Int’l Awareness Day 2008 is “Pledge to Care”.
The most important aspect of this pledge is to get educated about your partner or friend’s illness so that you will be of the most assistance and be calmer yourself with your interactions.
One of our most important tools we use all the time we call our “Letter to Normals”. This letter in a very beautiful way spells out exactly what Fibromyalgia & Chronic Fatigue is and does to make the person chronically ill and to cause them to not be able to continuously take part in activities and also, most importantly that confusing area of, “how come I look so fine, did something last time, but cannot do it today?”
Every time we have given this letter to someone, they get the tears in their eyes and there is an immediate understanding of what is going on.
That letter is too long to type out here, however, if you’d like to receive a copy, please ask me for it by emailing me at the SOFA email address of: sofa_fm_meok@hotmail.com and I’ll be happy to provide you with that and any other way we can help.
In my family I am the one with fibromyalgia/CFS. I force myself to go to work because my sweet husband has heart failure and diabetes and cannot work for these reasons. By the time I get home there is very little I can do, being completely zapped. My husband cooks dinner for me, and does the dishes and laundry. We pay a young lady to do everything else.