13-03-2012 Todays Diary


Hi every one: 
I dont know where to start. Today is the first day that I´m writing on this my Diary.
My name is Susana and I´m from Spain. I´m 29 years old and I suffer with a disease called Endometriosis.
http://www.endometriosis.org.au/  Here you can find some more info about Endo.

Today I feel great. After a week of horrible pain and wanted to finish with everything, today I feel more then good because I can move my legs and I dont have a saw machine cuting my waist.
I have pain moust of the time but I try my best to handle it.
Im proud to say that my Doctor told me that Im more strong that what I look, when I told him that I didnt wanted any more drugs. (some times I regreat thouse words when the pain bent me) I need to have the control of that.
Im trying to find the words to descrive the first time I knew something was wrong...
I thought I was "Dying". Or I wanted to die to stop that horrible pain.
I woke up from bed and the entire bed was full of blood I couldnt feel my legs and the pain on every single part of my little body was the worse pain I have experienced and I have a child (no I dint use epidural). But that is so long ago "5 years ago". I cant write this without feel sad (deeply sad) knowing that Endometriosis will be there if I dont get operations.


But that was long ago, although I remember it like yesterday.
Yesterday. I woke up after a really bad night sleeping or not sleeping and the pain on my lower back, my head, my back, my legs..my whole body aching, stopped me to go to the toilet, so I lied in bed the whole morning untill I felt I could walk without have to drag my body on the floor. I  got up deciding that I needed a shower and some food, but I couldnt do it. 
At 5 I went to the kitchen and had some food. At night time I was as happy as lorry cause I could feel the pain was leaving me.
This morning I woke up and I was happy, happy knowing that the storm was passing and I might was going to be able to stand up.
I went to see my caunciler and as always that man have listen to me and give me more power to keep going.
I have start seeing him not long ago. After a horrible year I knew that I needed help, that I couldnt do this journey on my own.
After years of  pain, doubts, lonelyness, missunderstanding,...and lots more that I dont have the words to describe or are to painfull to talk about, I decide to go to another country to see if they knew there  what was wrong with me.
Was I really crazy like the doctors, family and friends thought or was I sick but they didnt know?
I was desperated.
That is why Endometriosis is called  "the invisible illness",(and there is just one test that can diagnose it.
 Laparoscopy) No one can see nothing wrong with in you. You can talk, can walk (some times) all your body parts are attached to your body and NO ONE can feel your pain, so the best explanation was that I was crazy and I was making everything up. (I cannot stop myself crying when I remember my desolation)
I questioned myself every minute, I punished myself every second, I was nasty, destructive, sad, Destroid.
Why me?...I had that question on my head all the seconds of the day and no body never answered.
I wanted to be heard (as I was invisible) so I became louder. I wanted to be understood so I became nasty when no body belived in me. I became crazy cause no one belived me.
This f***ing illness did destroy a really good part of my life but I will win the battle.