tag:blogger.com,1999:blog-7121366373034963667.post1389478307994644307..comments2023-12-21T07:16:44.979+00:00Comments on The Myasthenia Kid .....: Changing the course of other peoples lives whilst stuck in bed!The Myasthenia Kidhttp://www.blogger.com/profile/11584534247370646805noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-7121366373034963667.post-19157209040594066432011-09-17T22:01:20.414+01:002011-09-17T22:01:20.414+01:00I have recently met someone who believes she has E...I have recently met someone who believes she has EDS...she has hypermobile joints, migraines, and the other day a very sudden onset of complete fatigue !!! What a mess ???I am finding it hard to understand all she is going through..why is she not diagnosed...would it make a difference if she was ??/<br />Apparently has always been 'double-jointed' and had 'growing pains' as a child..Some days you would'nt even know she was afflicted but this only lasts for a few days...she is about five foot one, petite, dark hair and huge dark eyes...like a bush baby...does this sound familiar to anyone....Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-84926774948546895532011-09-11T10:49:42.739+01:002011-09-11T10:49:42.739+01:00Rachel,
Thanks for your comments.
Many people I ...Rachel,<br /><br />Thanks for your comments.<br /><br />Many people I have come into contact with have said they question their illness / sanity due to having to fight all the time and the barriers that we come across in the medical profession.<br /><br />Sometimes I feel like giving up and withdraw from the fight, only to come back stronger.<br /><br />Thanks<br />RachThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-66595238012691829122011-09-10T20:55:21.703+01:002011-09-10T20:55:21.703+01:00Rach, sorry I haven't commented in a while. As...Rach, sorry I haven't commented in a while. As you know we were without power for a week, then spent the next week cleaning up the aftermath!<br /><br />Sharing you're life with EDS & POTS serves as a learning experience for many (myself included)...After awhile we have to move past the why me stage, put on our big girl bloomers and deal with it..Sadly some never move past...you have to become a warrior and fight for a diagnosis and fight for good care as well...<br /><br />Keep on fighting...we're not crazy, but sometimes the fight almost makes us start to question our own sanity!!!Rachel https://www.blogger.com/profile/14572451529799829878noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-48139736072396303892011-09-10T18:09:21.686+01:002011-09-10T18:09:21.686+01:00Thanks Hilary xxThanks Hilary xxThe Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-7121366373034963667.post-89709826709374823232011-09-10T15:00:48.456+01:002011-09-10T15:00:48.456+01:00Hi Rachel .. Well done for pressing forward with t...Hi Rachel .. Well done for pressing forward with the information you have - and I guess with your sister's diagnosis as well - your family's GP has kept her medical interest in taking closer order .. <br /><br />Hope you can get some relaxation in amongst all the inconveniences .. all the best HilaryHilary Melton-Butcherhttps://www.blogger.com/profile/17596532480645510678noreply@blogger.com