Things have been a bit quiet on here. I apologise. I have been working at what I consider my other full time job; my health. I have a rare genetic condition called Ehlers-Danlos Syndromes (EDS) which affects my connective tissues. This is the ‘glue’ that holds the body together. Secondary to this condition I have Postural Orthostatic Tachycardia Syndrome (PoTS) believed to be caused by the EDS.
PoTS comes under the umbrella term of Dysautonomia. This describes several different medical conditions that cause a malfunction of the Autonomic Nervous System. October is Dysautonmia awareness mouth. (I believe there are several conditions that October is awareness month to)
As you can see it can pretty much affects any part of your body. For me, my type of PoTS means as I move, particularly when I go from laying down to standing, my body can’t keep the blood from draining to my feet and staying there. So that is the ‘Postural orthostatic’ part of PoTS. The tachycardia comes from my heart trying extra hard to pump the blood back to my brain where it is needed. Syndrome just means collection of symptoms grouped together. This includes trouble with your stomach and getting headaches etc.
There currently isn’t a cure, you have to learn to manage your symptoms. As they can be numerous, I see lots of different specialists to work out the best way to manage my health. It means I have to coordinate my own care as there is no single specialist or department that does. As I have now moved to a new part of the county, this is means lots of meeting new specialists who often have never meet anyone with EDS or PoTS. I like to teach others about it where ever I go because it took me a long time to get the right diagnosis. Having the right diagnosis meant being able to treat and manage your own health. Not having that ‘label’ can and unfortunately often does end up with you feeling alone, dismissed and can make you a lot worse. It is what inspired ‘The Fairy Tree’ story that Daisy’s mother shares with her on their walk. The journey of feeling lost and scared to finding your way home.
So why share this? Well it is part of me and does influence and inspire my writing. I also want to help spread awareness so others in the future can get diagnosed quicker and looked after by medical staff who feel confident in caring for them. Maybe one day there may even be a cure. To those who suffer, you are stronger than you ever imagine you are and are not a burden. Do not let others or yourself tell you otherwise.
Love and gentle hugs to all my fellow chronic illness warriors and those who love them.