tag:blogger.com,1999:blog-3251345393759638797.post1534116166201216711..comments2023-07-03T06:13:31.926-07:00Comments on Flexibility is over-rated, creativity is ingenious: When family can start seeing a chronic condition for what it is, and the person beneath it allNakkihttp://www.blogger.com/profile/05002509830552516954noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-3251345393759638797.post-7929776067307492822010-10-13T21:44:56.194-07:002010-10-13T21:44:56.194-07:00Happy Thanksgiving - The linked video was superb. ...Happy Thanksgiving - The linked video was superb. The love shining through. An honest truly heartwarming account of someone who has a proper understanding of loving someone with EDS. <br /><br />It seems that in so many blogs so much of what you mention with regard to family reaction to the condition is a common denominator. I mentioned somewhere in a comment lately to a lovely young woman with POTS that it seems it does matter what initials one's condition represents. MS for example seems to bring widespread acceptance and understanding, perhaps because it is not a rare condition. EDS mixed reactions indeed or normally for me at least a rapid explanation followed by people not quite knowing what to say.<br /><br />It seems that in the UK motility issues are just not taken so seriously (ie: GI Tube) even getting a gp to listen with regard to this aspect of the condition is hard let alone find a Consultant who has sufficient knowledge to take a referral.<br /><br />You are so right in your description of each persons EDS being unique and that despite you being a twin this does not mean that your EDS affects either of you the same. I am not a twin but a long time ago now taught identical twins, two different sets who struggled, without having rare genetic disorders to be seen as unique individuals. Throw EDS into the pot & I hear your frustration loud & clear.<br /><br />I think some in my family do 'get' the EDS but just don't know how to process the enormity of it. Others have their heads firmly in the sand.<br /><br />I love the honesty of your blog. Also find the layout invigorating yet relaxing at the same time - if that is possible, it must be as I find it so. The colours please me. Its harmonious I guess.<br /><br />I looked properly at your profile picture today and its clever really clever. The sitting amongst the standing... We all have in common the way we sit amongst many other things. Our personalities all different. Our condition affecting us uniquely. Our experiences it seems so often so similar.<br /><br />I so get the statement 'ALL THE TIME.. problems<br /><br />Take care and a gentle virtual hug from the UK.Acheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.comtag:blogger.com,1999:blog-3251345393759638797.post-18855706452658367502010-10-12T14:57:44.529-07:002010-10-12T14:57:44.529-07:00I know I've mentioned it somewhere before... T...I know I've mentioned it somewhere before... The 5 stages of grief in regards to the "loss of health" when you're diagnosed with something. <br /><br />Most of my family is still stuck in the denial stage about my EDS. They just don't think that it can be as bad as I say it is. <br /><br />I can go days without complaining, then there are days when, every five minutes something new pops out, or randomly starts hurting, and I get frustrated and complain a lot. They think that on the days I don't complain, I don't have problems... I do, I'm just not complaining about them, because they're ALL THE TIME problems.<br /><br />I'm glad to hear your family can see you for you again. It gives me hope for my family.BubbleGirlhttps://www.blogger.com/profile/00932935674980101062noreply@blogger.comtag:blogger.com,1999:blog-3251345393759638797.post-87501994126264557422010-10-11T17:41:03.529-07:002010-10-11T17:41:03.529-07:00Happy Thanksgiving--I'm glad you had a good ti...Happy Thanksgiving--I'm glad you had a good time. I'm so envious of your family understanding EDS, understanding you through it. My family doesn't get it yet. They obviously know I have bad joints, but I think that's still what they think of it as. They have no idea how much it actually affects our lives. I can't wait to get to the other side, where they get me again--beyond the crutch and braces and surgeries--but that means they'd actually have to acknowledge that these things are happening and are connected. Interesting about your twin, too. I love your blog.Xanhttps://www.blogger.com/profile/04191916306026514964noreply@blogger.com