Tuesday, 2 July 2013

An Introduction...

Hi everybody...or maybe nobody! (This could get extremely awkward).
I have never done anything like this before, so please bare with me :)

I am a 19 year old, from England living with an invisible, chronic, disabling, incurable illness called
Ehlers Danlos Syndrome (or EDS as it can be simplified to). For those who may not know what ethat is exactly, Ehlers Danlos Syndrome is a inherited, genetic, connective tissue disorder. It really is very difficult for me to put into words as so much of my body is effected by this illness and quite frankly, the description sounds pretty simple. I hopefully will, (if this blog gets a few more page views) go into a bit more detail in another post about my personal experience with EDS. I aim to cover how this illness effects my everyday life, what it has caused, how it has made me disabled as well as in depth information regarding Ehlers Danlos Syndrome and thr overlapping illnesses I have developed form my diagnosis.

Ehlers Danlos is a lack of the correct collagen proteins in an individual's body. Collagen, as far as I have always been told by specialists, professors and doctors is visualised as the glue of the body that holds everything together. 'Sooo you have a lack of collagen, is it really that disruptive' some may be thinking. Maybe not having the correct collagen structure in my body doesn't sound all that scary, however it is what has stopped me living an everyday life for the past 6 years now. It has what has caused my body to currently be in a disabled state and it has made me a housebound young woman from my teenage years. Collagen is found in skin, bones, blood vessels, internal organs, the spine, tendons, ligaments, cartilage...you catch my drift. No part of the human body is invincible within this condition or diagnosis. I get pain in every joint and organ possible, I spend most of my day in bed, I dislocate and sublux daily and my world has been spun upside down. I also suffer severely with anxiety and depression, that is the part that is probably most frustrating and unwanted at a young age. Like many, I didn't ask for an incurable illness that took a disabling turn. I want to be living like any other young woman. 

My own diagnosis of Ehlers Danlos (no two patients are the same) is both internally and externally, meaning my joints can dislocate on a daily basis without me barely moving ( like in my sleep). My organs move around in my body with no collagen to hold them in a tight, compact position causing intense amounts of pain and inability to function correctly. I also have trouble with the digestion of food and drink on a daily basis (this has been since I was a small child). 

Today something just came over me, I was sitting having an extremely bad afternoon feeling very isolated and sad and all I could think of was,' I wonder if any other teens out there with chronic illness or pain that are having this incredibly low moment like  I am today'. Frequently, I scan Google and YouTube looking for teens in similar situations seeing if it is just me who feels this way. Cut off from the world because of an illness, forced to miss out on everything because of an illness, feeling like my body is that of a 90 year old because of an illness. I have never come across a blog directed for teens or young adults in chronic pain with an illness similar to myself, so I just felt like it was right in my heart to start something up to not only share my experiences, but because I want to strive to help others and in return help myself I suppose you could say.

 I hope the blog name doesn't scare people off, it is just what seemed to come to me straight away. I'm chronically ill, I'm a teen right now and I have moments where I can cry into my mums shoulder feeling like a lost part because of something that dictates my life.

I want to reach out to people out there who may be just like me. I'd love to hear from young teens and adolescents; even parents who have a teens at home suffering with similar chronic illnesses. I want nothing more than to hear your experiences of how you deal with it too. Some of you may be feeling lost and isolated in a world of pain, experiencing things that maybe even your closest friends and families can't understand. It is terribly isolating to live this way when you are still striving to achieve so much.

Illnesses are hard to deal with and we may not be able to see the light at the end of our tunnels just yet, I hope in time this blog can help us all. I'm hoping the power of the internet and words of a young person in chronic pain can be turned into a positive helpful thing for anyone who needs the encouragement, including myself. 

So if anybody see's this and just wants to give an input, comment or get in touch, I'd much appreciate that :)

Thankyou for your time spent reading this. Wishing you all well, 

1 comment:

  1. this seems like an amazing blog... I don't have EDS but I love how you are so open about it. By the way, you also write really well