I just want to put a post up here to let people know what it feels like to finally be validated by a team of doctors. I have had doctors on and off tell me I have an eating disorder, it’s all anxiety, it’s all in my head! The common pattern for pots patients. To finally be told, yes, you have autonomic disfunction, with other potential issues triggered by it, was brilliant! Not because it was another diagnosis, but because I know now what it is! Pots, with dysautonomia. Basically, my autonomic nervous system does not function correctly at times. And at times, it tries to hit the hard reset button; and fails! Drastically! Lol! More info can be found at: http://www.dysautonomiainternational.org
After a few years of fighting and telling doctors in ED I do not like their attitude, as well as metaphorically flooring a locum cardiologist, with education on something he clearly knew nothing about, I’m finally where I wanted to be for 2 and a half years. I want to thank the team at a hospital in London, who are very very good. And in my opinion, world class! Their expertese now mean that I can try to educate others and help them too. It also means I can try to manage what I have. There will be days when I’m too tired to work properly at my studies, which means I’ll have to keep taking breaks every 10 minutes, due to constant fatigue and impared concentration. There will be times when my heart races and races away. Which will make me tired. Most likely, there will be other things, as well, but at least now, I know, it’s all part of the dysautonomia package! Not something I asked for for christmas or a birthday, but I have it anyway. I just hope my blog (well, the pots part) helps someone else out there. Where ever you may be. If you’re still getting abused and gaslighted by doctors in ED and other specialties, stand up and fight! It’s not in your head! Dysautonomia is real! Pots is real! IST is real! Brain fog is real! You’re not suffering from anxiety in that regard. At least! I mean, you may have anxiety, but that does not mean the doctors should shrug you off and blame everything on it! They are far too quick to do that nowadays. It’s wrong! So keep fighting your corner! What you have is real!
life in the darkness 