tag:blogger.com,1999:blog-6063982749891853919.post6075894733782516370..comments2023-10-26T12:24:46.408+01:00Comments on im confused: where have i been?emhttp://www.blogger.com/profile/14196652412958890367noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-6063982749891853919.post-49906041661643316242010-10-21T09:46:10.852+01:002010-10-21T09:46:10.852+01:00hi achelois
patience by default, how true. i cer...hi achelois<br /><br />patience by default, how true. i certainly wasnt a patience person before all this. i have no choice now to take things slowwwww.<br /><br />planning can be difficult. i was going to my aunts in the summer and had to cancel the day before due to feeling unwell. the old me would of been feeling very guilty. this me, well i couldnt do anything but stay home, i was unwell. theres always a tinge of sadness, yet this illness does take over at times theres no denying that.<br /><br />im still learning about this illness, thanks for writing about your experiences they do help in a rare dx world, without the internet i would only have the info the drs gave me. xemhttps://www.blogger.com/profile/14196652412958890367noreply@blogger.comtag:blogger.com,1999:blog-6063982749891853919.post-84664582402927453042010-10-21T01:25:03.630+01:002010-10-21T01:25:03.630+01:00Em, your final paragraph is so wise. EDS is a con...Em, your final paragraph is so wise. EDS is a confusing condition. It has so many strings to its bow. Your positivity is an inspiration. You 'do' in many ways far more than I. I am sucked into family life admist a certain chaos.<br /><br />I understand your explanation of an brain in ordered mess. EDS teaches patience by default, filing dreams and aspirations into order of importance. <br /><br />I find planning anything difficult, do you?<br /><br />Breaks away are a tonic but in their own way tiring. So to pace and survive is good so good. A beautiful part of the world for a mini holiday.<br /><br />You have had so much information to process following on from diagnosis. To spend all that time not knowing then ending up recently at the hospital as too rare a specimin is just surreal. To go from being misunderstood to brown thank you envelope's is fodder for a novel I think. Titled - From me to rare and back again!<br /><br />There is a way round everything em. Thank you for reminding me on a day when I needed reminding.<br /><br />xoxoxoxoxoAcheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.comtag:blogger.com,1999:blog-6063982749891853919.post-13384261241717249142010-10-19T09:24:34.050+01:002010-10-19T09:24:34.050+01:00hi nechtan
i really havent got a handle on the br...hi nechtan<br /><br />i really havent got a handle on the breathing issues. its such a terrible feeling, i do sit with it but wow are they difficult. the biggy would be doing things on my own, which at the moment is a little hard because i cant walk! i think that will be when the challenges really, well challenge me. xemhttps://www.blogger.com/profile/14196652412958890367noreply@blogger.comtag:blogger.com,1999:blog-6063982749891853919.post-47746728579177838422010-10-18T23:31:56.679+01:002010-10-18T23:31:56.679+01:00Hi Em,
Glad you had some fun at the hospital whic...Hi Em,<br /><br />Glad you had some fun at the hospital which must be a rare commodity- I speak from experience. Such a shame though that they took so long to decide they couldn't use you. Preferably they could have made that decision before you left home.<br /><br />Sounds like you had a good time at your aunts and good to read you are managing the breathing problems so well- I'd be off home the second they happened. And so good you are handling the anxiety so well as reading your posts you do seem to have discovered a new found freedom as a result.<br /><br />A nice end to the post too, very psositive. I really can't begin to imagine what last year was like for you but I am glad things are going so well for you now in other areas.<br /><br />All the best<br /><br />NechtanAnonymousnoreply@blogger.com