Reading others posts

As I've been reading other people's posts and responses to discussion threads, I'm learning something. There are many things that I have though, and been told, were signs of me just not trying hard enough. If I just tried harder I could make it better or different. But now I'm learning that I'm not the only one who has these issues. Like trouble getting moving in the morning. Being out of energy for the day by 1pm. And I already feel so much less alone than I did twp days ago when I joined this site. I still have frustrations to be sure. But it is so very heartening to know I'm not alone! :-)

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Permalink Reply by Hopabout on February 22, 2012 at 6:34pm

ditto !

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Permalink Reply by Bubbles on March 9, 2012 at 2:21pm

You are definitely not alone my friend! :)

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Permalink Reply by Hopabout on March 9, 2012 at 4:39pm

I am so glad you are here! The first time I went to a support group in Jacksonville, Florida there were about 30 people there. Doctors were giving you anti-depressants and you had no clue why - some made you feel like you were dreaming your symptoms up - but you were fine till D-day! Others had docs that were treating them with various things that other people had never heard of and the news media on Fibro and ME/CFIDS was cruel.

Then we got internet ! wow ! Then we got chats and websites and blogs. And, research right under our nose! Life changed. We began to see people all over the world suffering from the same symptoms. We could see the connections from the neurons in the brain to the stomach and intestinal problems. We could hear about stiffness and pain so bad people could not stand up even if they did feel like getting out of bed. And, we began to hear of what things helped them, what some doctors were doing or prescribing that did not cure, but made the symptoms more tolerable.

I think the most serious part of my partial recuperation for lack of a better word, is validation. Validation that we are all suffering from the same thing. That we have different symptoms depending on what parts of our body has been affected. That we are not JUST depressed, though many of us are depressed because we are so sick. I proved that when I moved to the desert of Peru and walked out of a wheelchair... hated it there, had a bad relationship and so upset and depressed, and NOT ONE symptom. Don't let them feed you that garbage... its fake.

Now there are groups, advocates, doctors, researchers, all fighting to find a cure or to put down the beast inside us so we can have quality life. We get to know all about that with a click of the mouse.

They now know that certain genes switch on and off with signals that actually occurred before we were born, perhaps even several generations ago. They do not affect our DNA but our epigenetics, One of our switches is epigentic. Now they know that so they can work around it and find help.

Nope... at this point I have studied over 600, belong to many support groups now and have through the years and I know oh 200 people at the moment that have this. You can line them up, ask them questions and make yourself a chart as to who has which symptom in the syndrome. Such validation ! From all over the world !

Sorry you suffer but glad you found friends that care and understand !

HOPabout Cheryl