Ehlers Danlos Syndrome
While my sense of lack of satisfaction is still very much there, and I find it hard to be proud of myself for going out or 'doing' something, I'm trying to take things one step at a time and realise that I'm working my arse off, and that's worth celebrating. And setting myself small, achievable challenges is definitely one way of helping me manage that.
If I wasn't this unwell, I probably wouldn't have done any of the things that I have done since I was eighteen. If I was well enough to have gone to drama school in New York when I wanted to, I would have. Instead, I have had to constantly find new paths to follow that are right for me at any given time. And they have changed so many times.
So lets begin with a simple question? Do you remember the last time you had a stomach bug? The last time you had food poisoning? Or the time where you could not stop vomiting? Maybe the time you had the flu? Where you lacked energy unable to do anything? All of theses are what patients with gastroparesis live with daily.
For about five months, my 'writing about health' thing has moved over to Instagram. And while it is an amazing platform, it doesn't do justice to the complexity and importance of understanding the science and the why behind a lot of what I choose to do.
I'm now on a plant based, gluten free, sugar free, high nutrient, anti-inflammatory, juice infused, smoothie obsessed, rotation diet. I very rarely eat anything out of a packet (even if it fulfils my diet criteria), and I spend most of my daily energy on preparing my food. I have slip ups (it's normal when you make such dramatic changes), but I know that what I'm doing is right for my body.
So, today, on Rare Disease Day, I'd like to take the opportunity to share some quick things that millennials (ugh) living through their teens and twenties with chronic illnesses will know. I hope that this will serve to help people be more understanding and aware of what they can do to support their friends and loved ones who fight every day for their health.
Three chronic illnesses that left me bed bound, feeling more ill than I had ever done in my life, and more and more depressed (which certainly didn't help the situation). I spent hours trawling the internet and asking people online how they were able to live 'normal' lives. That's all I wanted. I had had to give up jobs that I loved...
Discovering you have a chronic health condition can be scary, but it's like finally having the light switched on after wandering around in the dark for years. I no longer felt like a crazy person, I had a reason to be tired all the time, I wasn't imagining more joint pain.
"EDS is considered a rare disease...and it is incredibly discouraging when no one has ever heard of it, when you have to spell it for your doctor and watch him Google it to find out how to treat you, when no one you know has it, and you are forever the weird one. It makes for a very challenging, lonely journey."