It’s that time of year again, May is EDS Awareness Month. For the whole of May I’ll be raising awareness of Ehlers Danlos Syndromes. For those of you who don’t know what it is please head on over to my EDS info page. For the last few years I’ve offered to share info on any…Continue reading EDS Awareness Month – Open questions, ask me anything! #EDSAwarenessMonth
Temperature Regulation is supposed to happen naturally. Unfortunately many people with complex health conditions find that this simply doesn’t work. As many of you may know I have Postural Orthostatic Tachycardia Syndrome (PoTS). Basically, because of my Ehlers Danlos my autonomic system is a bit wonky. I struggle to adjust to postural changes and experience a…Continue reading Temperature Regulation Hints and Tips
I’ve heard a lot of chat about how people feel when they receive a diagnosis, so I’ve decided to share my ramblings on the topic. There tend to be 3 distinct trains of thought upon receiving a diagnosis. 1. I’ve got a diagnosis this is good. 2. I’ve got a diagnosis this is bad. 3.…Continue reading Diagnosis pro’s and con’s
I posted this photo on Facebook Yesyerday… I though it would create a visual snap shot of some of the problems faced bt people with Hypermobile Ehlers Danlos Syndrome (H-EDS) Well The lovely Ladies and Gents at the HMSA (hypermobility sundrome association) posted it again on their facebook page and twitter etc.. Fac I am…Continue reading May is Ehlers Danlos Syndrome Awareness Month!
EDS is a part of me, A part of my life and despite all of the problems, the pain, the endless fatigue, the tears, the sleepless nights, and the fact that as soon as I learn to manage one thing another one pops up! I wouldn’t change it for the world. I have met amazing…Continue reading May is EDS Awareness month! I have Hypermobile Ehlers Danlos Syndrome