Waging war on this disease(s) is so tough. Some days it gets me down. On top of that dealing with people that really don't understand anything about the disease(s) itself and the limitations it puts on us and then on top of that the war to find and get effective treatment--some days it's tough.
Thank you LymeNet community for being here. I feel safe here, knowing that you all understand. I can speak without fear. I don't have to explain myself when it comes to the disease. I know you understand. That is precious to me.
Posted by Catgirl (Member # 31149) on :
I'm with you Shiela. :) It is comforting to be among others who understand. I think that's why this site draws me back so much. I want to help, learn, and be among others who actually "get it".
Posted by gonzo (Member # 41410) on :
Your not kidding its like having friends that really care
Posted by GretaM (Member # 40917) on :
I completely agree.
I learn important things about these infections, and everyone is very kind and helpful.
This forum, and all of you, help me feel supported.
I very much appreciate it, and all of you.
Many thanks
Posted by lpkayak (Member # 5230) on :
yep
Posted by Robin123 (Member # 9197) on :
Thank you - I agree! An ongoing conversation for us -
Additionally, there's all the archived posts as well which you can find through the Search function at the top of the page - a record of everyone being helpful through the years -
Posted by Rivendell (Member # 19922) on :
Very, Very glad lymenet is here. Otherwise, I would still be hopelessly treating Chronic Fatigue Syndrome.
As bad it is to have Chronic Lyme, CFS is NO MAN'S LAND.
Posted by Jane2904 (Member # 15917) on :
Me too! I am so glad Lyme net is here.
Lots of help, kindness and support!!!!
Posted by faithful777 (Member # 22872) on :
**moving to general support**
Posted by KentuckyWoman (Member # 38894) on :
Amen
Posted by linky123 (Member # 19974) on :
I would have lost my mind a long time ago without my LN friends. Posted by Beloved (Member # 37415) on :
I was in a car accident 30 years ago, broke my back, and ended up using knee high leg braces & a cane.
And for all that first decade before Lyme, people would say What a blessing I am, an encouragement, etc. but when I came down with Lyme, people started drifting way.
When I got my spinal cord injury I utilized ways to survive, to transcend. But all of you know that Lyme, FMS, CFS don't play by the usual rules. You commit to something the day before, the next day you're trashed, people think you're unreliable, etc.
I really want to have a talk with God about all the societal and other things that come with Lyme when I get to the Other Side!
I'm just saying.
[ 09-05-2013, 03:08 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
I think it's 'cause people can relate to injury and healing and heroic effort.
But when it comes to something they don't know about nor understand, that's when you don't get the social support you need and deserve.
I try to explain it very quickly in order to paint a picture of what's going on so they have something to visualize, to think about -
usually I tell them immediately that it's a bacterial infection, that the bacteria can go everywhere and mess up our systems, and then we're not able to function,
and that it's erratic how it affects us, and please to have patience with us, take a cue from us as to how we're doing, etc.
![[group hug]](graemlins/grouphug.gif)