Isolation

ToDanceAgain

New Member

Joined : Apr 2006

Posts : 4

Posted 4/9/2006 3:15 PM (GMT -7)

Hi All,
This is my first time at this chat site and I don't have much experience in chat rooms. Please any errors in communicating. I tend to be a little wordy, that's just my style, so be patient. I have CFS and have been dealing with a more moderate case of CFS for the last 3 years. I left my job (early retirement) because of the symptoms of CFS, and now I feel so isolated. It is difficult to explain the illness to new and old friends. They expect me to be having such a great time with retirement. I hesitate to share feelings with working friends because they have so much on their plates. I am just looking for people to talk with who understand what it is like to have CFS.

hippimom2

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 4/9/2006 4:57 PM (GMT -7)

Hi Western, I'm glad you found this forum, but sorry that you have CFS. I understand about the isolation because it is very hard to explain the kind of fatigue you get and how debilitating it can be. There is a really good website called "butyoudontlooksick.com". There is something called The Spoon Theory written by a woman who has Lupus, but you can apply the Spoon Theory to any debilitating disease. I printed out several copies and gave them to my close friends and family. I do worry over time if friends will get tired of me not being able to do much or not really being able to make definite plans because I never know how I will feel.

Don't worry about being long winded - I tend to be wordy too. The CFS forum is a little slower than some of the other forums on HealingWell, but please post as much as you want. This is a great place to come to vent or if you need support, and it is also nice to support others.

Take care and you are definitely among people who understand.

Diagnosis: Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds: Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/

ToDanceAgain

New Member

Joined : Apr 2006

Posts : 4

Posted 6/28/2006 12:02 PM (GMT -7)

Thanks for the welcome. You probably are wondering why I didn't respond to your response. Well, . . . I'm not sure. Memory problems, lack of confidence (I didn't think anyone choose to respond to me) By the way, I have changed my user name to reflect one of my losses due to this chronic illness. My User Name is now, ToDanceAgain.
I really miss country western dancing. The energy required, the spinning, and sometimes the noice level of the music keeps me from going out dancing with my husband. Occasionally we dance for a very short period of time in our living room, but only on a good day.
Today, I have enjoyed reading the post of many members. Some are encouraging, but some just remind me of all the negatives of living with a chronic illness. I try to stay positive, but some days it is just soooo hard.
Thanks again for the encouragement.

The last of the human freedoms - to choose one's attitude in any given set of circumstances ...
-Victor Frank, **** Death Camp Survivor

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