Its really so sad that this community has to always worry about the media thinking we actually are well and choose to "pretend" we are sick. I understand that many are concerned about how it will look for a person who is dealing with an illness that can cause extreme fatigue and weakness to go out an accomplish a physical feat to create awareness. Yes, it seems a little backwards. We cant really have a sleep-a-thon though and have people pledge money.
I think as long as KGB makes it clear that the level of disability varies greatly with this illness and there are indeed many that fight just making it through the day. Again, I have been there. I actually was laying on the couch about to go absolutely crazy from staring at the same walls day in and day out and logged on to a CFS chat on a different forum. The people on the forum all seemed to know each other and one was racing around the house cleaning and the other was talking about her new hair color. This was a time when I could not have raced to the bathroom if I wanted or sat through some one coloring my hair. I logged off of chat because I could not relate.
On the other hand I would like to address the lack of optimism. People are on these forums because they are sick. I first logged on to a chat early in my illness and got off crying because I COULD still work daily and I still hoped for a day I would get well. I was told I would only get worse or may not have CFS at all by the people on the forum. Again I could not relate but for the opposite reason.
This illness has been a roller coaster ride. The ups and downs have driven me to depression worse than a constant level of consistent illness would have. To me that is part of the torture of this illness. I think if KGB points out that she may able to do this walk at this time but be bed bound next year. That makes this illness that much worse. We just dont know what the future holds and hopes gets knocked down time and time again.
This walk is about awareness but it is also about KGB trying to remain positive and do something at the stage of this illness she is currently experiencing, She knows her body and gets the risk. Sometimes I think it is pure jealously that some one else with this illness is doing something we cannot anymore. Believe me, I get that.
I really think all CFS forums can be depressing KGB. Chronic illness is depressing as hell! I learned a long time ago to come on these forums for the information I need. I look for new developments and to ocassionally support some one like you who is getting the same old "be careful....you cant push or you will fall ill forever...etc." There are few people with CFS that are that lacking in knowledge that they do not understand the risk of a possible bout with PEM.
I personally dont think I have ever had PEM in all of these 30 years and yes I have CFS! Unless I am in a constant state of PEM. I cannot go out and party and I have to get consistent sleep etc. If I have a god day and enjoy it physically and mentally I do not pay the next day or week. My good days and bad days have never had a rhyme or reason.
KGB....YOU GO!!!!
I think as long as KGB makes it clear that the level of disability varies greatly with this illness and there are indeed many that fight just making it through the day. Again, I have been there. I actually was laying on the couch about to go absolutely crazy from staring at the same walls day in and day out and logged on to a CFS chat on a different forum. The people on the forum all seemed to know each other and one was racing around the house cleaning and the other was talking about her new hair color. This was a time when I could not have raced to the bathroom if I wanted or sat through some one coloring my hair. I logged off of chat because I could not relate.
On the other hand I would like to address the lack of optimism. People are on these forums because they are sick. I first logged on to a chat early in my illness and got off crying because I COULD still work daily and I still hoped for a day I would get well. I was told I would only get worse or may not have CFS at all by the people on the forum. Again I could not relate but for the opposite reason.
This illness has been a roller coaster ride. The ups and downs have driven me to depression worse than a constant level of consistent illness would have. To me that is part of the torture of this illness. I think if KGB points out that she may able to do this walk at this time but be bed bound next year. That makes this illness that much worse. We just dont know what the future holds and hopes gets knocked down time and time again.
This walk is about awareness but it is also about KGB trying to remain positive and do something at the stage of this illness she is currently experiencing, She knows her body and gets the risk. Sometimes I think it is pure jealously that some one else with this illness is doing something we cannot anymore. Believe me, I get that.
I really think all CFS forums can be depressing KGB. Chronic illness is depressing as hell! I learned a long time ago to come on these forums for the information I need. I look for new developments and to ocassionally support some one like you who is getting the same old "be careful....you cant push or you will fall ill forever...etc." There are few people with CFS that are that lacking in knowledge that they do not understand the risk of a possible bout with PEM.
I personally dont think I have ever had PEM in all of these 30 years and yes I have CFS! Unless I am in a constant state of PEM. I cannot go out and party and I have to get consistent sleep etc. If I have a god day and enjoy it physically and mentally I do not pay the next day or week. My good days and bad days have never had a rhyme or reason.
KGB....YOU GO!!!!