Sunday, 14 December 2014

about personal life (living with EDS)

It's nighttime and I'm feeling down. Whenever that happens I tend to share something very personal that I shouldn't. This isn't in any way work or industry related. It's just me related.

I have Ehler Danlos Syndrome. And sometimes I get overly frustrated because of it. I'm barely coping this year because of it. I'm doubting myself because of it. I don't know can I work because of it.

For all those that don't know Ehler Danlos is a connective tissue disorder. It messes up your joints, your digestive system, your skin, your blood vessels. I had two back surgeries because I had scoliosis. I have joint pains quite often. Knees, ankles would be my most common ones. I have very easily irritated stomach and acid reflux. Often I'll get stomach pains. I get nauseous almost daily. When I was a child, I would spend my nights sitting in the bathroom, thinking that perhaps I'll throw up. I think at some point I got used to it, as right now those nights are rare. I can cope.

However as time goes on there's more and more things that I can't cope with. The acid damaged my throat. I get the reflex of coughing every time I eat. I end up with a sore throat most of the time. This year I had to struggle with constant tiredness. They diagnosed that I'm badly anemic. Why? My blood vessels don't hold properly, so there's a slow seepage all over my body.

What hurt back then is that you're treated like it's pointless to take care of you. "Oh you're getting worse. But that's to be expected. Here drink this very strong iron. It has lots of side effects, but it might help. Or you might need to be on it for life". It feels crushing. Especially when you see all the people with the same condition that ended up in a wheelchair. Or with a feeding tube. Or with a drain in their head. And I've heard that as long as you don't choose the wheelchair you don't need it. And perhaps in my case it will be true. I hurt, yes. I get incredible dizzy spells because my heart doesn't like pumping the blood to my head. I get tired easily and my heart has tachycardia. But I tell myself that I can cope. Because I have to and I'll have to continue to. Because there's no way to fix me. So it's part of me.

What hurts now is that tiredness is really making me struggle with my second year. When I get home I don't want to do anything. When it's time to wake up, I don't want to go anywhere. And it's getting me to breakdown. In the last two weeks I cried in front of my professors twice. And I think I startled one of them. Others probably find me weird. Or overly dramatic. Or unreasonably emotional. And yet I'm pushing myself more than ever before. Christmas is coming and here's me planning to go in 5 days a week despite the holidays and code code code.

My own mind is conflicting with me.

One side is telling me that I'm pathetic for complaining. That the world won't adapt to me. That no matter what I think I'll end up in a corporation and will work for longer than just 9 to 5. Because I'll have to. Because I can't afford not to. That there's nothing really wrong with me. Just some pains. Everyone lives with some pains. My boyfriend struggles with hyperactive metabolism. That comes with bad organ damage and pains too. There isn't anyone completely fine and in general I'm not as bad as I could be.

The other side says that it's okay to give up. Why bother trying? It will just get worse and worse and all I'm doing is torturing my body. I could easily be a stay at home woman. It wouldn't be too hard without any children.

And yet knowing me I would probably continue pushing myself no matter what. Mostly because I feel like it's completely up to me just how bad I get. Because I feel like if I don't give up I will continue going no matter how broken my body starts feeling. But sometimes trying to be me and trying to be normal gets so frustrating that I just... Well I spend hours of my sleeping time just sitting there listening to music, watching random documentaries on youtube and moping while nobody sees me. So today I write. Write about this weird side of my life. Because I've seen others share their experiences on the Internet, so why not?


  1. I can relate, I have Arthritis in my left wrist from this one time when I broke it. I have excessive Helicobacter Pylori in my stomach which causes extreme acid reflux, and to top it off I have Asperges Syndrome which makes any sort of social interaction difficult. But back when I was having troubles in my life, it was watching your videos that kinda helped me pick myself up, I would just kinda sit there moping around watching things on YouTube, but as I started to Marathon your Vampire series, I started to pick up again, I'm not too sure why exactly, I'm still not. But I wanted to say thanks, and that if you need someone to talk to, I'm only a message away!

  2. Oh by the way, its Sephy115 From YouTube!