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Supermom Has a Tear in Her Cape

This damn disease (DD) is like a rollercoaster at a sicko theme park.

When I had children in the home I had to have a strict schedule. Supermom could not vary one time or I would have a grumpy kid to deal with -- most of the time it was the one I was married to. Now that we are older and perhaps wiser I could throw out the schedule and do as I want -- but this DD came along.

There are no walks in the sunset, no second honeymoon, no let's drop everything and go on a trip, and not much money.

Many PWCs (persons with CFIDS) are forced to deal with CFIDS just like a terminal illness or death. We have a loss and I miss me.

I have two post-graduate degrees and have had two careers. Now the spell checker does not even know what I am trying to spell and I cannot help it find the right word.

I cannot even remember how to spell my last name consistently.

The one thing I miss most is the freedom of doing. I am on a schedule again. I hate it but it is the only thing that keeps me where I can do just what absolutely must be done. My husband records all my days for the doctor to see trends. We are at the point that if I want to do something stressing, like shopping (using a motorized cart) for more than half an hour, or visiting at a friendís house, I have a pre-day ritual of several naps and early to bed the day before in order to keep from over-stressing before that activity. I hate it.

I cannot keep my medications straight so my husband has them in little flip top containers and labeled. I know he has not had time to deal with becoming the caregiver after 25 years of not having that role. For five years he has slowly worked into the position, and not always willingly. I hate that he has to cover for me when I forget how to write a check, or gently remind me that I am hitting the wall emotionally, or that I am saying things backwards. I hate it.

Now he comes home, not to a wife, but to a different person every day. Sometimes asleep, or angry at myself and everything around me, falling, wobbly, and sometimes confused about something I am trying to do. When I keep buying bath soap, though we have 50 bars at home, he just laughs and hugs me. He accepts it and, without being critical in front of other people, lets me ride in my cart, picking up things in the store. I hate that I am doing this to him.

I cannot go out much -- tired of the local police having to help me remember where I live. I have a car phone and my husband will tell me how to get to and from places -- if he is available. So what happens if he is not? And what happens if he is no longer there for me? Many PWCs know this feeling all too well -- and all too often -- as spouses, family members, and friends drop away and disappear.

I did get out for two hours yesterday. My daughter took me to a craft show. I did not want a wheelchair so I walked -- slowly, and with breaks. I enjoyed it but she was stressed. She is the type who runs when others walk. Her Christmas gifts are bought by November 1 and wrapped by Thanksgiving. I hated holding her back. I hated it.

This is a nightmare and I want to wake up.

So today I am 'under the weather' as expected and I hate it. My husband is telling me that this is all part of the trend. I did a lot yesterday so today is down time. I hate it.

There is a joke that goes....."the good news about CFIDS is that you will not die, the bad news about CFIDS is that you will not die." And outsiders wonder why we choose plan B. My superwoman cape is ripped. I cannot even find the tall buildings. And when I do, I am too tired to walk, much less leap.

About the author:
Moonsage, mother of three, was a social worker before changing careers to become a process engineer (undergraduate degree in mathematics, Masterís Degrees in social work and business administration). A year and a half ago, she had to give up her career due to her inability to function enough to create accurate reports. Moonsage, 50 years old, has had CFIDS for five years "at least", with gradual onset of symptoms and severity. Regarding her education, Moonsage says, "That is all gone." Because of CFIDS, her cognitive abilities have deteriorated to the point of not being able to remember how to spell her surname -- a name she has had for 30 years.

© Moonsage, 1998

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