ProHealth.com
by Eunice Beck, RN
December 19, 2001
Dear Friends,
It’s that time of year again. Holiday parties, and family gatherings abound. The activities for which we try to prepare ourselves. Get extra rest. Allow plenty of time to get ready. Plan an outfit that will look nice and still be comfortable. Perhaps, for the women out there, even putting on makeup. Possibly taking pain medication just to enable us to go out. Doing our best to be “presentable” because we will be seeing people whom we seldom see.
What is our reward for expending all this energy, which we really can’t afford to consume? I expect for some of us, it will be hearing “You must be doing better. You look so good.” Dealing with a comment like this is both difficult and frustrating. I wish I had a terrific canned response. I’ve heard it too often, from loving family, and kindly friends, who just don’t have a clue what it is like to cope with this disease. If I have the energy left to try to educate others, I will try to explain: about energy planning, and about over expenditure. About how I had to borrow from my “energy bank” in order to be able to attend this party, and that the repayment of this “energy loan, ”will probably put me in bed for several days. Most of the time, my energy consumption is already pushing its limit, so I just ignore the comment. Occasionally I will just respond “I am doing OK right now”. If the comment really irritates me, I might respond “Yes, but looks can be deceiving.”
I recently went to an unplanned special event. A friend called, and begged me to attend. She even paid my admission. It was a charity event and is something dear to my heart. I really love and admire this friend. I agreed to go, telling her “Yes, I would love to attend.” Only I knew how difficult it was going to be for me. But I accepted this, and prepared myself to go out for an evening, and to be able to sit and listen to the festivities. I slept really late that day. I didn’t do anything else. I chose my outfit the previous evening. I took my time getting ready. I even took a break during putting on my makeup. Makeup is something I rarely bother with anymore. Fortunately, I didn’t have to drive myself. By the time I arrived, I was already totally exhausted. I can’t say I wish I hadn’t gone. Nor can I say that I didn’t enjoy the event, because I did. However, I was definitely not the “social butterfly” I would have been prior to my illness. It took me three days after that special evening to feel back to what is my “norm,” three days to repay the “energy loan.”
I remember last year about this time, I had a conversation with my psychologist regarding social events. I told her that in most cases, when I got to the party, I found a place to sit down, and let others come to visit with me. She immediately jumped to the conclusion that this was social withdrawal and depression. It took me quite a while to educate her. I really wanted to visit and interact with others. I was simply too exhausted, and in considerable pain. Sitting in a quiet corner at least allowed me to attend.
I hope for most of you, that your immediate family makes an effort to understand. If they don’t, perhaps those that do not may still be educated about CFS/FM. If you don’t do it now, you will probably find yourself doing so in the future. For the casual acquaintance or friend who may make a comment, it’s usually more energy efficient to make some non-committal response. Unfortunately, in our society, when people ask you how you are, they really don’t want to know. It’s just considered a polite conversation starter, and most don’t care to hear a lengthy dissertation about your illness, aches and pains.
In some ways, my spouse and I are lucky. All our family is either gone, or they live very far away. We spend the holidays the way we wish, not the way the “family” decrees. While it is occasionally a bit emotionally difficult, not having family to congregate with, we do have a few friends who are like family, so we are not completely alone. On the holiday itself, it is usually just the two of us, both disabled. We spend the day doing what we feel like doing. Upon occasion, we have gone out for a lovely holiday dinner. It may be a little expensive, and that means we have to do some budgetary planning. This type of meal is prepared by, served by, and cleaned up by someone else. However, we usually just cook at home and enjoy the leftovers. There is no pressure to be anywhere, or eat any particular thing. If either or both of us are having a bad day, that’s fine.
I wish all of you happy and peaceful holidays, however and whichever holidays you celebrate. And may all of us have a New Year which includes much improved health for us and peace for the world. Try to maintain a loving spirit when confronted by those who don’t understand. And plan to sleep (hibernate?) all of January to restore yourself.
Yours in Health,
Eunice
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I welcome your comments and questions at: copingcorner@prohealthinc.com. My
articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.
Eunice
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