IRELAND 16/ 03/ 12
INVISIBLE
I use to be surround people. I use to teach Spanish and that gave me the opportunity to meet lots of new people that became friends. when ever I start getting really bad I had to give up all that( my all life). I didn't want to see anybody, I didn't want anybody to see me like that. Everything annoyed me, absolutly everything. I didn't know why if I liked all my friends, and I loved my family I didn't want to spend any time with them at all, or see them or talk to them and if I did I was always in bad mood. I was tired, so tired. I was really bad and always afterwards I was sorry for the way that I had answer or the way I had feel or many other things, but I couldn't explane anyone what was wrong because I didn't know myself. I stop going to parties, going out, getting dressed, getting up...I just wanted to be alone (die) because I did't want to hurt any one nor myself.
Last year was the worse time in my 29 years. I trided everything,(medication) I was analyzing myself all the time, (paranoid) I was like a Monster. The frustration mixed with the pain with the anger and with the medicines made me like that, a real Monster (I normally use other word, but I have to behave on the blog). I don't want to give the impression that I excuse myself on the medication but it really hurted me.(almost killed me). When I came to Ireland my doctor was fantastic, He was listening. (no Doctors did it before) A week after I was here my mum gave me the phone num and the email of my old Doctor back in Spain to call because the Doctor wanted to check how I was (back in Spain few months before this this same Doctor that was thinking that i was not well on the head because they thought I was making everything up). I wrote a letter , and email, I ment to call many times but I couldn't. The way that they treated me was (embarrassing) bad. When ever I had the strengh to call and I explaine that I had just beeing diagnosed (the second day that I was here) with Endometriosis and that all the medication that they gave me had damaged my kidney (medication that I didn't need) was crying on the phone to me asking me for forgiveness, but it was too late, How was I going to heal my kidney with forgiveness? How was I going to get back the time and all the things (and people) that I have lost in thouse years? I did it. I have done it. I have forgiven every one, the Doctors included. Now I m the one that is looking for forgiveness.
Have any you ever asked yourself what would you do if one day you were fine (with a beautiful promesing future) and the next day, you were diagnosed with a chronic illness that for more fortuneless is not curable, it is not well studied and no one belive you?
Friday, 16 March 2012
Thursday, 15 March 2012
IRELAND:15/03/12
How do I feel?
Two years ago, I had a beautiful life back in Spain that I couldn´t enjoy because Endometriosis. (sounds like the bad sister of Cinderella)
I had a family, my own business,...but my body was in automatic pilot trying to find the reason of why if I had everything I couldnt enjoy it. well... I couldnt because every day the first think that I thought when ever I opened my eyes was that I was in pain, tired, normally in a really bad form... I had to be all the time at the Doctor telling him what was going on with me, I had to explain all the time my pain, my anxiety, that I couldn´t eat, that I couldn´t rest, that sometimes I couldn´t walk...The answer was always the same one: "nothing is wrong with you Susana, there you have something to sleep".
One night I was in so much pain that afer two days on agony I went to the hospital 2 hours away from my house. The lights of the car didn´t work proper, it was raining and the movement of the road maked me sick and be in more pain. After hours of waiting in there in agony on a wheelchair, have test,... the Doctor came with the conclusion of why I was feeling that bad. He told me that my belly was full of gas, (fucking gas, certainly not laughing gas!!). I can´t express with words how I felt that day (stupid, silly, like a child...Gas?). Since that moment I really thought that I was mad. If nothing was wrong with my body why was I having that pain? was I imagining it? The embarrassment made me feel even worse, I got my jacket from the hospital room and whitout looking at the Doctor I said sorry to him and started laughing (it wasnt a happy laugh, it was a nervous laugh, I felt the most stupidest person in the world)
CALM. I feel so calm, I feel free, POSITIVE!!!!
I have walked a long path, next week I have THE appointment whit the specialist in Belfast, something that I have been waiting for for so long. (5 years) Two weeks ago I was kind of worried, now I dont.
I have done the difficult, now I´m ready to relax.
I´m running out of money, (I don´t care) because I know that something will come up, that I deserve to get better and I´m going to have it, don´t ask me why Im so sure cause, I just know. If you asked me how did I feel 2 years ago, my answer would have been: scared, trapped, sick, tired... but today I feel calm. I´m happy with myself.
I will write again tomorrow. xx
Wednesday, 14 March 2012
IRELAND: 14/ 3/ 12
New day, new light, new life?
I had a dream last night:
I was free. I was half horse and half myself. I was galloping, I could feel the air on my face, I could feel the power of my own body, I could feel the strenth of my muscles, non stop, nothing could stop me. I stopped to have some water on a river near by, and I saw my reflection on the water. I looked like a Nimph, beautiful and strong. Long hair with a wreath of flowers on, white body horse...so, so strong.
Along came a man carrying a sword. I looked at him wanting to show him my power, and letting him know that I wasnt scared of him. He looked a bit scared.(I think you would be scared of a half woman half horse) Eventually, He became closer to me looking at me attentively, but with a shadow of uncertainty in His eyes. He was a hansome man He looked wild, like me. I had seen men before but I had never wanted to stop to looking at them. Why was He different? Why was I not scared?
So many men have tried to hurt me, to captivate me but, He was different it seemed different.
He put his sword on the floor and approached to me...He touched me!! I havent feel touched in ages and he did...
Then I woke up with the fire alarm off at 7:30 am and I looked around looking for this wild man and for my strengh and what I saw was this shit hole...shit, Im in my bedroom (well is not even mine) alone and I start feeling the pain of my body again, remembering where I am. Why I m here? How did I end up here, 4000 km away from home, from my family?
Well... it all have an explanition.
I came to Ireland on April last year. After a long fight with my doctors and family (they wanted to put me in a mental hospital) I decided to come here to try my luck with the doctors.
I came the 13 of April to Belfast. I didnt know the people that I was going to live with, I didnt know the system...But I needed to try...I needed another opportunity because at that point I was that bad that the only other solution that I had was die. I wanted to die.
On the 15 of April I had a diagnosis.
I reborned that day.
The Doctor told me for the first time that I have got Endometriosis. I was in shock as I had never heard about it ever before, but It was better than telling me that I was crazy, that doesnt have cure either but every body knows (or we think what crazy is when we dont). I went to Derry, I asked for help, I started to read about it, meditation, doing some exercises, joinng support groups (that I thank for their help)...
But I missed home, God!! my home, my family...where were they?
I was with medication from Spain and my doctor here put me in some other medication. I started to take Tramadol 50mg, 2-3 times a day, Mefenamic Acid 500mg 2-3 times a day, Ibrupofen (every time I wanted to) Cocodamol, Codeine and paracetamol together, Vitamin B.....All that along with my sleeping tablets and anti-depressant pills.(that I never needed)
On the 27 of May I had a nervous breakdown. (that is a long story)
But on the 25 of May, I woke up on the floor in the middle of the street, a boy on a bike stopped to help me, he called the ambulance and I dont remember nothing more (this is so dificult to tell).
When they let me out of the hospital I was crying like a child, I was desolated and no one was there. The Doctor gave me some money to take the bus back to the north as I didnt have a penny on my pocket (I didnt have planned to travel that day) I cried and cried all the way back on the bus and in the house and in my bed...I just wanted a hug, I needed a hug.
But I will finish the story later. Today I m a bit concerned about something else. I went to see the Doctor (again. I should marry him, I see him more than his wife sees him...lol) to take the results of the blood test and they have found that my right kidney is suffering.
I will write again tomorrow. xx
New day, new light, new life?
I had a dream last night:
I was free. I was half horse and half myself. I was galloping, I could feel the air on my face, I could feel the power of my own body, I could feel the strenth of my muscles, non stop, nothing could stop me. I stopped to have some water on a river near by, and I saw my reflection on the water. I looked like a Nimph, beautiful and strong. Long hair with a wreath of flowers on, white body horse...so, so strong.
Along came a man carrying a sword. I looked at him wanting to show him my power, and letting him know that I wasnt scared of him. He looked a bit scared.(I think you would be scared of a half woman half horse) Eventually, He became closer to me looking at me attentively, but with a shadow of uncertainty in His eyes. He was a hansome man He looked wild, like me. I had seen men before but I had never wanted to stop to looking at them. Why was He different? Why was I not scared?
So many men have tried to hurt me, to captivate me but, He was different it seemed different.
He put his sword on the floor and approached to me...He touched me!! I havent feel touched in ages and he did...
Then I woke up with the fire alarm off at 7:30 am and I looked around looking for this wild man and for my strengh and what I saw was this shit hole...shit, Im in my bedroom (well is not even mine) alone and I start feeling the pain of my body again, remembering where I am. Why I m here? How did I end up here, 4000 km away from home, from my family?
Well... it all have an explanition.
I came to Ireland on April last year. After a long fight with my doctors and family (they wanted to put me in a mental hospital) I decided to come here to try my luck with the doctors.
I came the 13 of April to Belfast. I didnt know the people that I was going to live with, I didnt know the system...But I needed to try...I needed another opportunity because at that point I was that bad that the only other solution that I had was die. I wanted to die.
On the 15 of April I had a diagnosis.
I reborned that day.
The Doctor told me for the first time that I have got Endometriosis. I was in shock as I had never heard about it ever before, but It was better than telling me that I was crazy, that doesnt have cure either but every body knows (or we think what crazy is when we dont). I went to Derry, I asked for help, I started to read about it, meditation, doing some exercises, joinng support groups (that I thank for their help)...
But I missed home, God!! my home, my family...where were they?
I was with medication from Spain and my doctor here put me in some other medication. I started to take Tramadol 50mg, 2-3 times a day, Mefenamic Acid 500mg 2-3 times a day, Ibrupofen (every time I wanted to) Cocodamol, Codeine and paracetamol together, Vitamin B.....All that along with my sleeping tablets and anti-depressant pills.(that I never needed)
On the 27 of May I had a nervous breakdown. (that is a long story)
But on the 25 of May, I woke up on the floor in the middle of the street, a boy on a bike stopped to help me, he called the ambulance and I dont remember nothing more (this is so dificult to tell).
When they let me out of the hospital I was crying like a child, I was desolated and no one was there. The Doctor gave me some money to take the bus back to the north as I didnt have a penny on my pocket (I didnt have planned to travel that day) I cried and cried all the way back on the bus and in the house and in my bed...I just wanted a hug, I needed a hug.
But I will finish the story later. Today I m a bit concerned about something else. I went to see the Doctor (again. I should marry him, I see him more than his wife sees him...lol) to take the results of the blood test and they have found that my right kidney is suffering.
I will write again tomorrow. xx
Tuesday, 13 March 2012
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.
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.
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