Harriet and Rebekah posted comments to my blog about having a chat group. I think that is a wonderful idea! I have no idea how to set one up but Harriet said she would be happy to do it so I will let her take the lead on it. I think it will be a great place for us to talk and help each other cope!
Harriet, let us know if you need any help and give us the directions to join the chat when you have it started. I look forward to chatting with you all!
I will continue to blog so I hope you all will continue to visit here!
Kristy
Friday, March 9, 2007
Thursday, March 8, 2007
Connection
This has been so wonderful for me! To hear all of your stories and your encouragement has really helped me to understand I am not alone and I can still live a meaningful life. It is so important to me to live in service of others, to have a life of meaning that extends to the greater good, and the last few days have really shown me that I can still have that even though I have CFS!
I started this blog as a way to help myself deal with this illness and as a way to reach out to others that are struggling, coping, suffering, surviving, and living with this illness. I wanted to make a difference in someone’s life. The stories you have shared have touched me deeply and shown me that I AM reaching out to others and we CAN make a difference in each other’s lives!
One of the things that was hardest about this illness was how isolated I felt. It is a very lonely disease. There are no telethons, parades, marathons, or celebrities that make this illness visible to the public. I don’t really look sick. Most people I tell about my illness have never heard of it and the name Chronic Fatigue Syndrome really makes them go “huh?” “What kind of illness is THAT?!” “I’m tired too, do you think I have it?” I know they are well meaning and just don’t understand so I try not to get too discouraged! But it does make me feel very lonely. Like I can’t really quite get people to understand and recognize that I am sick. They think I can just sleep and feel better. First of all, I wish I could sleep, and secondly, if I could sleep I wish it would help! Sometimes, when I don’t feel like explaining my illness I just say “I have a neuroimmune disorder. It’s like MS”. Everyone knows what MS is so they nod with understanding and I don’t get anymore questions. Of course I feel guilty when I do this because I feel that I am doing a disservice to the disease and the millions of people like me that have it, but I can’t be an advocate every day. I get tired and I need to just have people understand that I am sick. I need to feel connected, if only for a moment. I don’t want pity, just validation.
This disease is isolating because people don’t understand but it is also isolating because of its limitations. Human contact is not something I have much of these days. My husband and kids are pretty much the extent of my social circle. I don’t get out of the house much anymore. The occasional grocery store visit is about the extent of my travel. This really limits the amount of human contact I have. Friends don’t call much anymore. They have lives to live too and they are just as busy as I used to be. I am not angry or bitter and I don’t blame them. I don’t know how I would act if it was the other way around. Maybe I too would have trouble finding time to visit them. I know it is hard for them to see me like this. It is a grief process for them as well. I remind them of how their lives could change at any moment. I remind them of how fragile life really is. That can be hard for anyone to take. Life is difficult, for all of us in different ways, and it is hard to be around someone that reminds you of that constantly. I know they still care. I get emails from them and when I see them in a chance meeting at the grocery store we hug and catch up and I can see the concern in their eyes and hear it in their voices. I am hopeful that someday things will change, but if they don’t I will find other ways to connect. Like this blog!
By writing in this blog I am less isolated. I can get my feelings out, share my experience, and make connections with others like me. I feel connected again. When I read the stories of others on this blog I feel intimately connected and I feel like I am doing something to make this disease have meaning in my life. And most importantly I feel like I am no longer alone.
I started this blog as a way to help myself deal with this illness and as a way to reach out to others that are struggling, coping, suffering, surviving, and living with this illness. I wanted to make a difference in someone’s life. The stories you have shared have touched me deeply and shown me that I AM reaching out to others and we CAN make a difference in each other’s lives!
One of the things that was hardest about this illness was how isolated I felt. It is a very lonely disease. There are no telethons, parades, marathons, or celebrities that make this illness visible to the public. I don’t really look sick. Most people I tell about my illness have never heard of it and the name Chronic Fatigue Syndrome really makes them go “huh?” “What kind of illness is THAT?!” “I’m tired too, do you think I have it?” I know they are well meaning and just don’t understand so I try not to get too discouraged! But it does make me feel very lonely. Like I can’t really quite get people to understand and recognize that I am sick. They think I can just sleep and feel better. First of all, I wish I could sleep, and secondly, if I could sleep I wish it would help! Sometimes, when I don’t feel like explaining my illness I just say “I have a neuroimmune disorder. It’s like MS”. Everyone knows what MS is so they nod with understanding and I don’t get anymore questions. Of course I feel guilty when I do this because I feel that I am doing a disservice to the disease and the millions of people like me that have it, but I can’t be an advocate every day. I get tired and I need to just have people understand that I am sick. I need to feel connected, if only for a moment. I don’t want pity, just validation.
This disease is isolating because people don’t understand but it is also isolating because of its limitations. Human contact is not something I have much of these days. My husband and kids are pretty much the extent of my social circle. I don’t get out of the house much anymore. The occasional grocery store visit is about the extent of my travel. This really limits the amount of human contact I have. Friends don’t call much anymore. They have lives to live too and they are just as busy as I used to be. I am not angry or bitter and I don’t blame them. I don’t know how I would act if it was the other way around. Maybe I too would have trouble finding time to visit them. I know it is hard for them to see me like this. It is a grief process for them as well. I remind them of how their lives could change at any moment. I remind them of how fragile life really is. That can be hard for anyone to take. Life is difficult, for all of us in different ways, and it is hard to be around someone that reminds you of that constantly. I know they still care. I get emails from them and when I see them in a chance meeting at the grocery store we hug and catch up and I can see the concern in their eyes and hear it in their voices. I am hopeful that someday things will change, but if they don’t I will find other ways to connect. Like this blog!
By writing in this blog I am less isolated. I can get my feelings out, share my experience, and make connections with others like me. I feel connected again. When I read the stories of others on this blog I feel intimately connected and I feel like I am doing something to make this disease have meaning in my life. And most importantly I feel like I am no longer alone.
Wednesday, March 7, 2007
Thank You!!
I just want to tell everyone that posted comments to my blog thank you! It was so wonderful to see all the comments today when I checked my blog! It is amazing how much hearing about how others are struggling and coping helps make this disease seem more manageable. I was touched and brought to tears at the stories you all shared. I am still re-reading all the posts, trying to take in all the information and the sentiment in them. They mean so much to me and I can identify with something from every single post!
After I digest all the information I plan to post a blog that talks about all the thoughts and feelings I have regarding the posts from today. It is so overwhelming (in a great way!) to hear from so many of you that are dealing with the illness just like I am. I knew I wasn't alone, but I felt alone because I didn't really know anyone that had the illness. I had only read about it in books and online. Now I feel like I have found others just like me that know what I am going through and it means so much to me!
I hope you will continue to check my blog and post your comments. Together we can make a difference to each other and to CFS!
Thanks again and good luck to us all!!
After I digest all the information I plan to post a blog that talks about all the thoughts and feelings I have regarding the posts from today. It is so overwhelming (in a great way!) to hear from so many of you that are dealing with the illness just like I am. I knew I wasn't alone, but I felt alone because I didn't really know anyone that had the illness. I had only read about it in books and online. Now I feel like I have found others just like me that know what I am going through and it means so much to me!
I hope you will continue to check my blog and post your comments. Together we can make a difference to each other and to CFS!
Thanks again and good luck to us all!!
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