Support for CFS
I'M NOT ALONE!
Support plays an important role in the battle of Chronic Fatigue Syndrome. Living with this illness means I am dependent upon family members, am housebound and socially isolated.
Some days are a struggle to get out of bed. My muscles ache, my head throbs and my glands are up. I feel like I have been for a 10km run. I am exhausted and spend the rest of the day in bed. Other days I have a bit of energy and can walk 200metres. Relapses are frequent so I am careful not to over do it. Just doing that little bit extra can have devastating and damaging effects. But with the support of family and friends I know I don't have to fight alone.
The severity and symptoms varies between each individual. Sufferers with severe cases can be disabling and completely bed ridden, needing 24 hour care. Moderate sufferers may need naps during the day, but are able to run simple errands. Without sufficient rest the sufferer is often setback with relapses. Mild sufferers can usually work full-time but need to be careful not to over do it.
Joining the CFS Association was one of the most positive things I could have done. The Association aims to advocate the sufferer with their extensive knowledge and information. With a support line run by dedicated volunteers having experiences in CFS it is a great comfort for myself and others just to know someone is there.
The Association provides a quarterly newsletter where members can share their views and experiences. It provides the latest updates in research, funding, seminars, case histories and support group lists/news.
There is an extensive Library and Book Shop available for members. For those sufferers who are unable to borrow books in person, a postage service is available.
Having the internet has been my only way of communication at times. Through the many websites related to CFS I am kept up to date with all the latest information. Many of the sites have online chat rooms, which is a great way to chat to other sufferers.
The CFS Association put me in contact with a local support group in my area. At first I wasn't so sure, I really didn't know what to expect. However I dragged myself to the first meeting. On arrival the group's friendly faces greeted me. The room was small but comfortable with a large candle burning in the centre. I was introduced to the group and felt relaxed instantly.
There were eight people within the group and like myself a couple had just been diagnosed. Others had been suffering for several years and one member told how she had fully recovered. She was an inspiration to us all. The ages ranged from late teens to the sixties. Unfortunately this illness can strike at any age. The group were a vibrant bunch and full of optimism. Surprisingly attitudes were positive attitudes all round, which was unexpected but a great relief.
The support group is run monthly where a quest speaker is invited to speak about a topic related to CFS. The speakers include Herbalists, Naturopaths, Psychologists, Physiotherapists, and Dieticians etc.
At each meeting if you are not worn out after the speaker you can hang around and talk with fellow suffers. It is amazing what you can find out!
Through the CFS Association and support group I have made many new friends. Having their support to share this experience; the highs, the lows, emotions, the fears and most importantly understand the frustration; I know I am never alone.
Please join me in the GIRL forum and post your thoughts on how CFS has affected you or the people you love.
- S.C.
CLICK HERE to find out what other support services are available for CFS sufferers.
Support plays an important role in the battle of Chronic Fatigue Syndrome. Living with this illness means I am dependent upon family members, am housebound and socially isolated.
Some days are a struggle to get out of bed. My muscles ache, my head throbs and my glands are up. I feel like I have been for a 10km run. I am exhausted and spend the rest of the day in bed. Other days I have a bit of energy and can walk 200metres. Relapses are frequent so I am careful not to over do it. Just doing that little bit extra can have devastating and damaging effects. But with the support of family and friends I know I don't have to fight alone.
The severity and symptoms varies between each individual. Sufferers with severe cases can be disabling and completely bed ridden, needing 24 hour care. Moderate sufferers may need naps during the day, but are able to run simple errands. Without sufficient rest the sufferer is often setback with relapses. Mild sufferers can usually work full-time but need to be careful not to over do it.
Joining the CFS Association was one of the most positive things I could have done. The Association aims to advocate the sufferer with their extensive knowledge and information. With a support line run by dedicated volunteers having experiences in CFS it is a great comfort for myself and others just to know someone is there.
The Association provides a quarterly newsletter where members can share their views and experiences. It provides the latest updates in research, funding, seminars, case histories and support group lists/news.
There is an extensive Library and Book Shop available for members. For those sufferers who are unable to borrow books in person, a postage service is available.
Having the internet has been my only way of communication at times. Through the many websites related to CFS I am kept up to date with all the latest information. Many of the sites have online chat rooms, which is a great way to chat to other sufferers.
The CFS Association put me in contact with a local support group in my area. At first I wasn't so sure, I really didn't know what to expect. However I dragged myself to the first meeting. On arrival the group's friendly faces greeted me. The room was small but comfortable with a large candle burning in the centre. I was introduced to the group and felt relaxed instantly.
There were eight people within the group and like myself a couple had just been diagnosed. Others had been suffering for several years and one member told how she had fully recovered. She was an inspiration to us all. The ages ranged from late teens to the sixties. Unfortunately this illness can strike at any age. The group were a vibrant bunch and full of optimism. Surprisingly attitudes were positive attitudes all round, which was unexpected but a great relief.
The support group is run monthly where a quest speaker is invited to speak about a topic related to CFS. The speakers include Herbalists, Naturopaths, Psychologists, Physiotherapists, and Dieticians etc.
At each meeting if you are not worn out after the speaker you can hang around and talk with fellow suffers. It is amazing what you can find out!
Through the CFS Association and support group I have made many new friends. Having their support to share this experience; the highs, the lows, emotions, the fears and most importantly understand the frustration; I know I am never alone.
Please join me in the GIRL forum and post your thoughts on how CFS has affected you or the people you love.
- S.C.
CLICK HERE to find out what other support services are available for CFS sufferers.
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