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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

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PO Box 28,
Hindmarsh,
South Australia 5007

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North Terrace House,
19 North Terrace,
Hackney, SA, 5069


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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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The Quiet Joys of Life
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This article originally appeared in the March 1998 issue of Talking Point.


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The quiet joys of life: how to cope with CFS

By Anneli Sinkko

So somebody built a highway through your life and you found yourself in an alien environment where nothing seemed to make sense. You, yourself, had not changed, if you were to look into a common definition of ‘self’ – you are still the same.

Rules of Co-dependency

We all live in some sort of co-dependency with our world – work, society, friends, family. We are expected to do our bit and in return we receive rewards; whether it is money, security, friendship or love. All of a sudden we cannot do our bit, there is a tremendous changed in our lives, and that is painful.

The old rules not seem to apply any more – we cannot work the way we used to, we do not get better even though everybody expects that we should, we cannot go out and dance and sometimes it is difficult even to take a shower. We have become aliens, and as such, we need to determine our own rules in order to survive and even enjoy life again.

Work

So we used to have a job, we were paid and mostly enjoyed what we were doing. That has now gone, and you may say, how do I cope with that? From my own experience, I can tell you that is very hard. In order to survive, you need to look for the positives.

Interests

You now have time to contemplate all those hidden areas of interest you never had time to do before. You may say that you are too tired to study, or even to try – but think, now you have the luxury of determining your own schedule. You do not have to go fast, you are in a privileged position of determining your own pace. One thing at a time.

Friends and Social Life

This is the one difficult area to cope with, since nobody seems to understand what we are going through. There is an exception that we will get better and return to the circles we used to inhabit with renewed vigour. It is really difficult to say “no, I cannot go out as I used to,” and it is equally difficult for our friends to understand what is going on. Let’s face it – most people with CFS are lonely. As a friend of mine said, “I wish I could meet somebody who did not know me before this illness.”

The life I live now has given me a gift of quiet joys. I learn to appreciate my family more – how supportive and understanding they are. This illness has given a gift of enjoying small joys which I previously would have passed over as trivial.

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