Broken Wings

&

M.E.  
(Myalgic Encephalomyelitis)

Triona Bonner Badmus
Copyright © 2018 by Triona Bonner Badmus

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other non-commercial uses permitted by copyright law. 
Introduction

What is M.E.?

What is M.E. and why would someone of an age of around 44 be writing a book about it. Well I'll try and explain to the best of my knowledge why I took on this project not just for myself but for the thousands in the world who suffer ridicule, exclusion and self-doubt for having it.

M.E. is a cruel, unforgiving disease that rips you apart from the inside out. It's a disease that's so complex even to this day after suffering the joys of having it for the last 31 years or so and still counting. I decided to write this not just as a story of how I got M.E. it's also a story intertwined in everyday life with M.E. as it's basis and sometimes wondering if I was normal would half of what has happened to me in my life would have happened at all if I didn't have to experience this cruel, painful and extremely challenging disease both physically and mentally. This is a story of a journey of extreme lows but with a faith that sometimes dwindles but is never extinguished in the hope of guiding me through it. This is my story one of only a fraction of what happens in my life and in the lives of people with M.E... Thank God not many had to experience the other misfortunes that travelled with this disease through my life.
Introduction 2

A spider in a web looking and smelling for a fly, the fly helpless, innocent, unconcerned caught in the spur of the moment, caught now enchained in a web of strength, weakness, power, injustice, love and pain. That is what my life is like I'm the fly caught and endlessly struggling to survive both physically and mentally. I became stuck in this web many years ago. I have M.E. (Myalgic Encephalomyelitis) I know what a bloody big mouthful for such a crappy disease, sorry about my use of words but sometimes it's the only way I can express myself. They say the truth will set you free and I just hope by writing my life through these chapters it will give me closure in my life and help to others.

M.E. is to me a jail sentence for punishment I still have not figured out, yet with this sentence came many obstacles both physical and mental that I battle every day. You are ripped of everything and even sometimes your own sanity in the process of trying to save yourself from the thousands of doubting Thomas's that lurk in every corner of your life. You are fighting two battles at the same time one of trying to overcome the pain, muscle weakness, twitching, severe tiredness, and eye problems. Hearing and smelling problems, Cognitive stuff like slurred speech to forgetting where the heck you are and what you were doing 2mins ago. At the same time, you are battling to have the right to say you feel pain without the ignorance and hurt of people who think you look FINE! 90% of the time people who may look fine on the outside have hardly no visible signs of pain, discomfort, fatigue, muscle twitching or dizziness to name but just a few, but believe me we are suffering unimaginable things. Frustration at people's perception that it is all in our heads.  Believe me it is far from it.

It's frustrating for us to be seen as people that won't pull ourselves together and wake up, go for a walk and get out there. We bloody can't. With most diseases you get to see something like a cut, no hair, crutches, bruises, lumps, something to show the world that you are in pain but with M.E. you get my normal face which in most cases in public I'm smiling what else can I do cry in front of my children or friends to get my point out there, people would think I'm crazy! Sometimes I'm so tempted to hang a card around my neck that says I'm sick but those around me would think I'm playing a joke. This hurts so deeply sometimes more than half of the deep cuts and wounds I have experienced through my life already. There are days I want to scream at the world at the injustice of it all. I don't like playing the sympathy card what's the point only those that know me best understand why.

Pain is for me the biggest struggle of M.E. with fatigue coming close after. I believe it is part of my life now and for many years I would scream why me? Then one day it hit me why not me! This is a disease you would not wish on your worst enemy, no matter what they may have done to you in life.

I was a girl care-free and playful, but overnight over 30 years ago it was stolen from me. I was pushed into a life I was not ready or prepared for. I had no training for this nor would I ever have, I was scared and maybe a bit more today years on as I have two amazing daughters that were never meant to be here in the first place and I fear I will never be free from this even with them now in my life.

My wish for one day is silence of the brain (it goes to fast), peace and no pain. I need to put together the pieces of the real Triona, which is constantly been ripped apart by the struggles of this DISEASE, I need a miracle.
Chapter 1

CHILDHOOD MEMORIES OF LOVE AND PLAY

My earliest memories pre M.E are ones of laughter and of peace that I find really hard to describe. I was so happy. I had an older sister Mary; she was blonde and blue-eyed. Then there was me pitch black hair with again blue eyes.  (I was known as the black sheep of the family) Then there was my brother Derek who got the nick name Bo because of his blond curly hair later on in life and last but by no means least was the baby of the family, she was small from the onset and still is but you wouldn't mess with her and she had light brown hair and green eyes and her name was Sinead.

We grew up like most kids in those days very care free. I was a daughter of a fish monger called Jimmy who worked out of Killybegs and we lived in the most amazing little fishing village in the north west of Ireland called Burtonport. Killybegs was a good 45minutes away from our home and dad did that journey twice or three times a day depending on when the boats were coming in. My mum Margaret rose was a housekeeper, a cook a taxi woman to all our needs, and all round mother who did everything for us. Both parents worked hard to keep us safe and a roof over our heads and food on the table. We grew up beside our dad's parents and to their credit their love for God and their religion and faith gave me the courage all through my life to always turn to God through times of good, bad or indifference.

Both my parents had and still have to this day a strong faith; we all do in our own ways in my family. It has guided me out of many a black hole in my life and one you will hear many times going through these pages of my life. (This might put some people off but I hope it doesn't)

Life was crazy like all families in that time we were all born between the years 1972-1976. We played, cried, laughed, fought and helped each other out. Sometimes we would gang up on each other me and my bro on one team and my two sisters on another. We loved each other and continue to do so even through all our ups and downs and believe me there was many. We loved, laughed and cried together like all families

As a baby I had chronic asthma and hearing the words we have to go to see the doctor sent me into such a panic I would run the other way. I knew all too well it meant I would have to go to get an injection to open my airways, but even entering his driveway I would scream in protest. God love the poor doctor at the time he was only trying to help me but at such a young age I just saw him as the enemy, ready to hurt and not to heal.

My life was like that the ups and downs of all small children, we had a great childhood and 100% credit to both my parents for that. They let us run up the hills, build our own forts play with the neighbour's kids everyone knew everyone. Life was life and also during our young childhood mum was hospitalized with her knee and finally years later with a lot of suffering she finally got a new one. There seemed to be always someone in my life growing up and during the course of my life enduring some kind of cruel pain in their lives. Yet those young years of my life have always been my happiest memories.

I had a family who I loved with all my heart little did I know the heart break I would befall on the people I loved the most in life and the years of pain I would cause to their lives, the friends that would enter but leave just as quickly because of a disease no one could understand. I was about to break up the family life my parents had built so hard and lovingly into pieces that were never going to be able to ever be fixed again in all our lives.

I felt I brought it into our family life and the lives of others to come many years later but I had no control of what was about to come. I was given no sign or either my family to what was about to befall all our lives. It also gave me a guilt to carry all my life and even up to my present day. This disease was like a robber in the middle of the night, merciless and very unforgiving to everyone in the family. I was robbed of my youth, my innocents, my ambition's and sometimes all body functions.

I was torn and broken in two. I lost who I truly was meant to be in life and sometimes I mourn for the person every so often as I felt I could have offered more in life to many. 
Chapter 2

MY JOURNEY TO A DARK PLACE!

For me my journey of pain was just about to begin. It was a normal night I went to bed and when I woke up on the 12th of February 32 years ago life as I knew it had changed forever. From the time my eyes opened that morning I knew something was very wrong. My hands were swollen, my fingers were huge and I was in so much pain, it was a gradual thing at first and then all of a sudden it gravitated to a place I didn't know could ever exist.

First I was taken to a rheumatologist who first diagnosed me as having Stills disease or arthritis in children as it was also known. My family were in shock just as much as I was. Tests upon tests followed and with it more disturbing symptoms came like fatigue and sheer exhaustion my body started to shut down on itself, slowly I could feel my body start to fail me.

I could see the terror in my parent's eyes and the hurt that they could do nothing to help me as I got sicker in front of them. I became bed bound and completely depended on my mother for feeding, clothing, lifting, you name it she had to do everything for me it was as if I had gone backwards to my baby stages again. Little did I know then that this would continue for many years to come!

For me I started to lose who I was, I was now trapped in a body who fecking couldn't do anything for myself. The pain I felt was like something I could never ever explain to you on paper my dignity took one hell of a battering.

Next I was sent to a hospital for almost a year to be monitored, tested for whatever was happening to my body, and pumped with every drug known to man to try and relieve the constant symptoms that appeared. I was winning a losing battle every time they thought they had a handle on it something else would pop up. I was also separated from my family and only got home on a few weekends and it broke my heart as I missed my family so much. My poor mum would have to travel every few days to see me and I hated her leaving without me but she had no choice these doctors were trying to help me. Also mum had to look after my bro and sisters they needed her just as much as I did. It must have been a terrible time for my mum too being pulled in two directions and not knowing if you were doing enough for your family as it was split up. That year and the many more that was to come was especially hard as a mother. She was trying to look after a sick child not knowing the outcome and also trying to be as good a mother as she could to my siblings that they deserved too.

I know they lost so much because of my illness and it hurts even to this day what I took away from their childhood even though I so never meant too. I loved them so much but this illness robbed them also, No one escaped its brutal grasp.

Before I go any further, I have to say a few words well maybe not a few but a lot about hurt that was going to follow me in a terrible way. As you know I have questioned many times Why me? And why did I have to have this bloody thing. I felt it brought things into my life that if I had not got this illness then maybe some of the stuff would never have happened to me at all. I blame my illness for one major thing and some more but this was a situation that caused me more hurt and pain than any child should have had to go through in life and still haunts me to this very day.

At the end of that year in that hospital where every drug you could think of was used to help me but in vain. It was decided I should be transferred to Dublin for more tests as they felt Dublin had more to offer in trying to figure out what was happening to my body. So on that last night in the hospital I slowly climbed up the stairs to the doctors lounge to watch top of the pops as I was the youngest patient there at the time and this was my treat. Off I went up the stairs in my Tom and Gerry jumper and jeans. I sat down and started to watch the TV. There was a doctor there but not one that was on my team of doctors that always looked after me. I was under a great team of doctors at the time and had great respect for them all. As I watched the TV, I could hear this doctor in the background on the phone, a nurse came in to ask him some questions don't know what as I was too in to the music to listen and then she left. Suddenly I got this terrible feeling inside me

I was scared but I didn't know why. He told me to come over he had some questions to ask me I thought this was weird as also he had my file in his hand. He talked about my dad, mum and my siblings and he knew where we all lived he made a point about this; this made me feel very uneasy. Without warning he grabbed me and within seconds I was on his knee, he grabbed my hand very hard and put it between his legs and I could feel something hard I was in shock mode I didn't know what he was doing my mind raced I kept thinking what the heck is going on. Then he started to kiss me I can still feel his facial hair rub against my skin it was prickly and sore and he kissed me hard on my lips. I wanted to run but my body was frozen in shock then he put his hands up my top I knew what he was doing was wrong but I couldn't escape. The phone rang and his hands came down from touching me all over and I made a run for it but he grabbed me by my hair and whispered that if I left He would kill Mum and Dad.

That stopped me in my tracks; he finished the call and put me back on his lap with his hands now between my legs. I felt sick physically I so wanted out of there. He then told me if I ever told anyone what he was doing he would hurt Derek, Mary and Sinead. I said okay and I let him carry on with his sick games, he got on top of me he was very heavy for my 12 nearly 13-year-old body. I keep thinking if I do what he says none of my family would get hurt and I kept as still as possible as he continued. Then the phone rang again and he had to get of me to answer it so with ever fibre in my body I got my clothes on and I ran for the door and didn't stop till I got to my ward and jumped into my bed and covered myself.

The lovely lady next me asked if I was okay and through sobs I said I was fine.I wasn't, shite my life fell apart that night and HE stalked me all night walking past my ward. Mum picked me up the next day I said my goodbyes to all the lovely staff that were good to me over that year as he lurked in the background. It was a quiet drive home mum thought I was tired but I was so scared inside I didn't know what to do. It was days later that two very good friends of mine who were boys noticed that I was very different around them, when one of them came too close to me I hit him, god love him he didn't know what was wrong but with their patience they knew something had happened and told me to tell Mum. It was one of the hardest things I had ever to do in my life but I couldn't bring myself to ever tell her or anyone the whole truth of what had happened that night I still can't explain it to myself as I always feel I could have done something to stop it yet I'm never sure what. Things moved very fast and the main doctor in charge was told, he was amazing and went to try and find out what happened. The nurse lied and said she was never in the room to this day I don't know why she lied and the doctor himself said it was all in my head. Again adults had all the power. I was visited at home by a doctor to see how I was physically and he asked for my hand to check my pulse, of course I gave over my arm he was a figure of power, what came out of his mouth next shocked me to the core, he said if something had happened to me I wouldn't have given my wrist over to him I was in shock.  In those days you did what a doctor, guard or priest told you to do, here again adults were in control and I the child was been lost I had no voice. How now then could I ever be believed when here was someone who was so respected in life saying I was lying?

Next I had a lovely lawyer come to question me about the stuff that had happened and what might be asked of me in court if it went any future. I think I got past the first 3 questions when sheer fear ran through me not only could I not bring myself to tell him the whole story all I could think about was what if this man killed my family if I carried on telling the truth. Could I live with that and the answer was a definite NO! My fear of him doing something to my family grew and grew inside me and I said I could go no further in the case.

I know he got a caution for his troubles and I have lived with the guilt of him possibly doing the same to someone else or even worse and it haunts me that I could have stopped it from happening but I was too scared and my families lives meant more to me then and still do for any man to ever hurt them. I will always live with the what- ifs, but, that is just one of the many ordeals I would have to live with in my life to come. Sometimes in life You have to choose between good and evil, With great regret sometimes evil wins his shares of the battles of life, that's why when you choose the path you do in life it's very important to others around you, how it will affect you and the ones you love later on in life. Choose wisely and be stronger than I was because Evil should never win in any battle find a way to conquer it, you will feel better in the long run and life itself will be all the richer for you and the one's you love. You can conquer evil in this world you just have to open up and ask for help in whom you trust in this life and never give up. 
Chapter 3

I WAS FINALLY GIVEN A NAME FOR IT!

Next in my life was the endless possibilities of trying to find a cure, I was now bed bound and had to use a wheelchair to go out as I had no energy to walk let alone stand.

My quest for a cure was beginning. I could sleep for 14 hours straight wake up and be so tired that I had to go back to bed. I hated lights and mum had to blacken out the room for me. I also hated noise and my parents would say I could hear the grass grow; all my senses were heightened but for all the wrong reasons. My muscles weakened which lead to chronic mental and physical fatigue. Then after almost two to three years after I got sick I was told I had M.E... I didn't have a clue what it meant let alone how I got it or how I was going to get rid of it. No one had the answers for me but a lot were quick to judge it as the yuppie flu or say I was lazy and to just get out of the bed and stop wrecking my family's life. Yet I had no control over what was happening to me and only those close to me knew this.

Then my family heard of a doctor down the country who was certain that after he saw me was almost 100% sure he could cure me. I was so excited I so wanted my life back so mum and I started another journey together travelling almost the length of Ireland and back every few weeks to this doctor. He gave me little bottles of brown stuff that had to be added to water, ultra violet therapy, ozone therapy where they took some of your blood out mixed it with this stuff called ozone and put it back into the body again. I remember being in a room one day getting this done with a big farmer when he shouted that there was an air bubble in his line I never saw a doctor run so fast to pull the line out of this person. I had no idea what had happened except that this big man suddenly fainted in front of me, it was years later we found out that this therapy was very dangerous and I was very lucky nothing bad had happened to me during the time I was getting this. There were many angels in my life fighting to keep me safe as they do to this day. I was also given vitamin drips by this doctor and mum could smell the stuff off me on our way home that evening it was very strong

All these therapies were in the hope of a cure for me. On the way back one day a year into all this stuff, my parents were almost bankrupt from paying for this miracle cure that was supposed to happen we had a terrible car crash outside Galway, I don't know except for god's grace we were not all killed that day. After that day we never returned to that doctor as his treatment didn't do what he had promised all along. I was back to square one and I was and still am extremely sorry for what I had put my parents through both financially  in trying to get a cure for me, they nearly lost our home and loads more and all of it I felt was my fault and this fecking disease.

My heart was broken for them and also my siblings. They again lost out on having their time with mum as she spent most of her time trying to find a cure for me. I fell to this day that I robbed them of mums love and time that they so deserved just as much of her time and love that she had given to me. Mary, Derek and Sinead I'm truly sorry for all the time and love you lost out with mum through this time and with this bloody disease if I could turn it back time I would in a heartbeat but I was powerless in changing any of it" I'm so sorry."
Chapter 4

ROCKING FRIENDS AND KNOCKING ON THE DOOR OF COLLEGE

Through all of my illness my love for learning never faded even though I could hardly go to school after I got sick. I craved for some normality in school work. I was not overly brainy but my thirst for knowledge was immense. I can't believe I'm saying this but all I wanted to do was learn like all my friends.

All through secondary school I had some amazing friends, I had lost a year at primary school due to the illness while trying to find treatments to cure it, don't worry the quest for a cure still went on and even up to this day. These amazing friends would send my homework home on the bus with Mary my sister and when I finished it she would give it back to them to give to my teachers. Without Mary Boyle, Dot Breslin, Frank Breslin, Joe Mc Bride, Janice Gallagher and Geraldine Huston I don't think I would have ever made it to my leaving cert and of course the teachers at the Rosse's Community school they were all amazing they worked as best they could around my disease.

They gave me a gentle push to not give up on my studies. I pushed myself all through secondary and it was tough I wanted to keep up with my class no matter what, I wanted to succeed too. Yes, a lot of friends didn't understand what was going on with me, they pulled themselves back that hurt me so much. I have to say a special thank you to Mary Boyle, you got me when so many didn't I owe you so much you're my third sister. You let me rant and rave about this disease all through those years and even to the present day you never judged me. You were always, and still are at the end of the phone whenever I want to give out or give up. In my darkest times you got me out of that black hole and I thank you so much from the bottom of my heart and I thank God for you every day.

My final exam of my leaving cert was art which I loved and it was the road I wanted to take. You see I didn't want this disease to tell me what I couldn't do in life I wanted a chance at life too and I fought it every day to get what I deserved in life. On the last day of my exams I collapsed as soon as I came out of my art exam, I was physically broken but I had achieved one of the many goals in life that I wasn't meant to with this awful disease, but it certainly came at a huge price.

So in June 1992 I got my leaving cert and was accepted into two art colleges, one in Letterkenny and the other I chose was the other in the Northwest Institute of higher Education, for a Diploma in General Art and Design in Derry. I was so proud of myself but here a second battle would soon start.

My Art studio was in the Magee College in a lovely open style complex. The pain never bloody left but I worked my ass off and had to leave early some days due to M.E. and the tiredness would overcome me that I would have to rest for a while and then I would come back at night to try and finish my work. Some days I couldn't pick up my pencils but I fought through it. My poor Dad was called many times to take me home for a rest and it's a good 90 minutes' drive and bring me back the next day. I truly from the bottom of my heart will always thank you Dad for all the things you did for me in those years of college. I know I was a pain but you never complained. I was also in a city that the Northern Ireland troubles had not yet fully left, and there was still a lot of tension between Catholics and Protestants and I know that worried both my parents and grandparents.

I also now know that my body was also trying to tell me to slow down for those two years but I didn't want to give up on my dream that I worked so hard to get, I didn't want to give up on myself or on others. Then just before the end of my second and final year of college I found myself on the banks of the Foyle looking down into its dark water. It was here for the first time in my life I wanted to give up I couldn't take the pressure of college and most of all I wanted a way out of having this disease. I felt I couldn't give my art or myself any more of me, I was in so much turmoil inside my head and body I thought my parents, siblings and those around me would be better off without me in this world. I felt since I got M.E. all of them had a life sentence put on them too. I felt I had robbed them of their lives too.

I stood for a long time looking in to the water I just wanted everything in my life to stop there and then. I wanted the physical and mental pain to stop once and for all. I jumped in my head and to my shock my body didn't follow and as I looked down in the darkness I saw a glimpse of a ledge beneath me I guess God had different plans for me. I know for me the minute I thought I had jumped I knew with in a millisecond I didn't want to die

It's very hard to explain that emotion. Straight away shock, shame, guilt and relief ran through me. I sat on that ledge and told God I was so sorry for what I nearly had done. Yes, I was in a very dark place that night but also in that darkness I felt a calmness come over me as if someone or thing very heavenly was beside me comforting me with love and it wasn't the first time I had felt this presence.

All those years that I was stuck in my bed unable to walk God allowed me every night to go to the pier in Burtonport with this presence looking after me in my dreams. I was allowed to stay hovering over a big stone that still stands there to commemorate all the fishermen who had died at sea and there have been many through the years in the North West of Ireland. I never figured why I could go there in my dreams but it was my escape at night and here I was in Derry trying to throw my life away, it was here on the banks that I understood a little bit of Gods plan for me. I was very grateful to be alive.

Suicide is not a thing that the human mind has ever come close to understanding and I can only say from my point of view is that when you get to a point in life where all you see is darkness and pain, no matter how much love you have in your life and all around you, you just do not see it, it's as if you have blinkers on you, you are in your own bubble of pain. In that moment, selfish as it may seem to some, you are not thinking about the people you are going to leave behind or their pain, You are not thinking straight, full stop! For the few who realize this just in time or get help before we get to this place we can only pray for others to get there too before it's too late. Life is a gift that should never be taken for granted. Life is to be lived.

These feelings stayed with me all my life I am ashamed to say and are still with me to the present day. What keeps me on this earth with all the pain and tiredness is the love I have for God, the love I have for my family and my friends, I would be lying to you if I didn't say it is a constant struggle to find the positives in life some days to keep going and not to go down that dark tunnel that is so appealing sometimes even with its darkness, it's a place no one can touch you in, but one you have to fear at the same time. It maybe alluring with, it's get out of life card but believe me life is so precious, it's a gift we all have to respect and one that is given to us only once. 
Chapter 5

MY BODY GIVES UP AND MY DREAMS ARE BROKEN

Somehow I got back to my flat that night and an amazing woman who lived with me at the time called Aine Goghran quickly knew something was wrong with me and sat me down and talked to me. I owe her everything for how calm and understanding she was and also she rang my dad for me who came to Derry that night in record time. We didn't say much to each other that night we didn't have to. I knew my family loved me I had to find a way to love myself something I struggle with every day. I also saw hurt and sadness in dad's eyes that night too and I hadn't seen that for years with him, as Dad had lost all his family when we were young.

First was his only brother Aloysius in a very tragic accident in Burtonport harbour when I was younger. His car had gone over the harbour in a freak accident. In those days there was no railings around the harbour and Aloysius was watching something on the other side of the pier when he was reversing his car when suddenly it went into the sea. His loss to all who loved him was horrific. He was a young man with two lovely sons and a wife who loved him so much. He was meant to do more in life but God wanted him home, he died way too early but someone who lives in the hearts and prayers of those who still love and miss him. God I miss him so much then and I still do.

Then many years later it was his dad who passed away after a stroke and then sadly it was Granny Bonner who went then not to many years after that. Dad had suffered so much pain in losing all his family and here I was someone who had beaten so many odds I was given many gifts from God like Art, Music, Love and understanding and also something I didn't want this disease which fought me every day. I had to make a choice to let it beat me or to get off my ass and beat it head on as best as I could. I asked my poor Dad again to take me back to collage so I could finish the last few months of the course. I had to prove to my family and to myself that I still had that light of hope burning inside of me.

I passed with 2 passes, 23 merits and 3 distinctions. I was so proud of myself. I thank God, Our Lady, my angel and the many saints and angels that helped me along the way. Of course I can't forget my family who helped and also who put up with all the stuff through those years at collage.

Next I was offered a teaching degree in NCAD in Dublin and also a BA in embroidery in Belfast as I had majored in it towards the end of my course. I thought I would make a good teacher so I accepted the degree in NCAD and headed to Dublin for my new accommodations with such excitement. I had done a diploma already so I was going past first year in NCAD as I didn't have to do it with my diploma as it showed I already had covered everything in that year already and then some.  I remember getting into a taxi that day and giving the address, the driver knew my accent and said I was far away from the north. I said I had been coming for a good while to a lovely Prof in St James's hospital who was looking after my disease at the time. That's all I remember till I woke up in St. James's, hospital.

My Prof. Con Furriery was now standing over my bed and I was very confused. He told me I had got very sick in the taxi and the driver took me to the hospital and told them everything I had told him in the taxi. I remembered nothing. Worse was to come I was told I had pushed my body to its limits and now I was on the brink of sheer exhaustion my body had finally given up and it wasn't planning to get better fast.

I was once again back to hardly no movement at all. Muscle twitching, pain and fatigue had all increased 100 fold. I was told then I could never go back to academic work ever again. I had pushed my body too far and it had decided to shut down on me and this time it gave me a kick in the teeth as they to say it was not helping me any more to succeed in anything in my life. The disease had won again but in such a cruel way. I felt robbed of everything in my life especially my college years where I had to work harder than most just to keep up with my class and for what? Life was too cruel, life sucked and it held no meaning, I was trapped in my own jail.

St. James's Hospital would now become my home for the next few months and eventually one that I would have to visit very often from Donegal to try the many types of treatment that they hoped would work.

As with the medical profession in the past I had the misfortune to come in contact with many more who said I was lying about how I had all these symptoms and it was all in my head. Some of the stuff that has been said over the years is mind blazingly cruel. Thank God for the ones who did believe me in St. James's but I had to prove also that what I had was very real. So to make some medical professionals happy I had to travel for a whole year every few weeks to a psychologist to prove to them all I was sane and not lying. It was a very dark time in my life again.

I was put into a program with other people who had different types of illnesses like Cancer, Cystic fibrosis, HIV, MS and a few more. Thankfully I was proven to be a very sick person with M.E., with pain, musical twitching, fatigue and much more and I was depressed because of these symptoms and not been able to get treatment for it rather than the other way around where the medical profession thought I was just depressed. On my last day with my psychologist I asked him Did I have all my marbles in my head?

He looked at me and said, "Yes Triona, you are very much sane you are sick and in a lot of physical pain ". It was a very small victory for me over the medical profession but one I would still have to fight even to the present day. I am so glad in the last few years that the World Health Organization has come out to say M.E. is a neurological disease and at least people don't have to go through some of the awful things I had to just to prove I had it.

Before I go any further I have to tell you about the main doctor early on in my life who without him I would not have got to Saint James's and to my present day hospital St. Vincent's and that's Dr.  Anthony Delap, or as I am allowed to call him now Tony. I met Tony around the time I was struggling at college and he was looking after my lovely granny Bonner who was very sick at the time. I remember my mum going on about this new doctor who had just moved to Burtonport and how good he was to people and that I should talk to him. He was from the Gweedore area and every one sang his praises so I was intrigued to meet this amazing man. As my poor granny Bonner got sicker I finally meet this doctor one night in her house, Grannie's lungs were filling up very quickly with fluid and the doctor was trying to keep her comfortable. It was here I saw Doctor Delap's great kindness To granny and to all of my family. When we did finally get to talk we sort of bounced off each other, he had this knack of almost annoying me the same way my dad and my husband does.

Slowly as college finished and I got sicker he took over my care. Believe me I was not the easiest of patients at times And I have no problem admitting it. He took my disease head on and treated it as best he could, he was an amazing doctor and still is to this day and I owe him so much for those early days when loads didn't believe me he never gave up on me. My gratitude for him and his wonderful wife Brid who had to put up with Mum taking me to his house late some nights when my pain was too much to bear. He is not just a doctor he is an amazing human being who has great kindness in his heart for all those who happen to pass his way as patients and friends. I will always be grateful to him and all his family.
Chapter 6

LOVE AND M.E.

Right up to my time in college and before I had some amazing male friends. I would fall in love twice.

In my twenties I fell in love with someone I had known from primary school. I felt we had a very real connection but he couldn't see pass my disease at times and I certainly in no way do I blame him for it, he tried his best to support me in my life decisions but couldn't see past at the time the limitations the disease had put on my life, but I still loved him, then he left me broken hearted and flew half way around the world to someone else. It shattered me into a million pieces as I had loved him deeply but  Years later I see he did me a huge favour because if he didn't do what he did I wouldn't have found the man I truly love with ever fibre in my body today. I still respect my ex and I will always wish him well for his own family now and also for his mum and dad and aunty who always showed me nothing but kindness and still do. I continued for some years to find a man who would take me and my disease on.

Before I get to this wonderful man, another love came my way or should I say a blind love, it took me to the other side of the world.

At this time, I noticed that my pain was suddenly travelling to my head now and also my jaw area which would lock with the most terrible pain and I broke some of my teeth in the process. I was in love! So I put how I felt to the back of my mind and tried to be as "Normal" as possible to this guy so I could be accepted as a proper girlfriend. I found myself travelling half way around the world then to be with him and his country was one of the most beautiful countries I have ever seen it was a very fast pacing country and it was so clean. I hoped my time there would change my illness how wrong I was.

One night while talking to him about the pain in my face and jaw he suggested we e- mail a top doctor in his country who was well into the researching stages of the disease as his country was always ahead in many fields, I agreed. I sent on the details of my new symptoms and gave him a history of my M.E. up to that stage. Next I went into the kitchen to figure out what we would have for dinner I came out to ask the man I was so in love with what he wanted for dinner that evening as I was all out of suggestions.

I was not expecting what he gave me in response. He turned to me and out of the blue he punched me with so much force in the face I landed on the tile floor, I remembering falling but nothing else till I woke up later on the same floor with him still on the computer.  I was in sheer pain which pierced through my head and body, shock and fear came next I had no idea why he did it. I dragged myself up the stairs shaking afraid that he was going to finish off his handy work. I lay in terror on his bed trembling when I heard him come up the stairs I shook violently at what was about to come. I braced myself but he just stroked my face and said he was so sorry that he would never do it again but that it was my fault I was sick. I prayed all night that God would somehow get me away from this man and back to Ireland. My Dad's words that he had told all three of us girls as we were growing up rang out in my ears. He had always said that if a man ever hit us once in life he would probably hit us again no matter how many times he said he was sorry for doing so. I prayed for a miracle that night and like many times before God heard my cry.

The doctor I had e-mailed the night before about the pressure on my brain and jaw getting bad had responded to say he felt that the disease had progressed because I had not rested the body enough and also he felt there was problems in the brain that had to be sorted out straight away. He suggested I go home to Ireland as the treatment in their country at that time was very aggressive and he felt I needed to see someone in the neurology department. I looked at Him beside me I knew he read it. I was almost shocked to tears when he said I should go back but I had to promise to return. I would have promised anything at that moment just to get home.

True to his word he kept most of my clothes and my money so to make sure I would return to him and with a lot of pleading he finally gave me my passport. He told me to do some present shopping for my nieces and nephews I just agreed all I wanted was to go home.

Finally, the day came and we reached the airport, we kissed and I nearly got sick I was so nervous he would figure it out that I was never coming back. I promised God if he got me through security I would never turn back. You see in the airport there is glass all the way to the gates so your loved ones can see you get safely to the gate and wave at you. I walked through security my legs shaking and started to walk to the gates keeping my eyes fixed on the gate. Next I could hear banging and screaming I knew it was him and my legs began to buckle and I began to fall to my knees with fright I feared for my life and I had to get to that plane. With every fibre in my body I got myself of the ground and kept moving to reach the plane. They were amazing air hostesses on the plane who got me to my seat and continued to look after me the whole way home, They were my guarding angels that day

I didn't breathe properly until I was a good forty minutes in to the flight. All the way home I could hear in my ears (we told you it would never work out with that man you were foolish for going in the first place), and yes many got the last laugh and enjoyed that I had come back with my tail between my legs but little did they know what I had escaped and even if they did know, they wouldn't of cared because to some I was damaged goods someone that no one would ever love. I had also failed again at something! My Dad knew something had happened but he never pressed me on it and I have to say I love him very much for that. He understood when so many didn't. It was my greatest escape in life from domestic abuse and I'm lucky to have a dad whose words impacted so much on me because only for them I would not be here today.
Chapter 7

MEMORIES OF A DIFFERENT KIND

One day while trying to write this book I sat down to look over the Daily Mail paper, it had in it that day a story I had only heard bits and pieces about and only now was I sitting down to try and catch up with it myself. It was about a high powered person who had sexually assaulted women when they were young. Memories of my time in hospital came flooding back as well as memories of a similar kind that I had blocked out for years. For in the beginning of this terrible disease I have told you about the many drugs that I had to try to relieve my symptoms and with every drug of course comes side effects. So in the beginning I would go to a doctor farr away who I thought would help me out and relieve these symptoms of ulcers in my stomach that would come also.

A lot of the time the medicine would upset my belly so much the pain with that would sometimes equal that of the pain of the disease. So the first time we met for a consultation he asked me to lift my dress so he could check my tummy and I would cover the rest of myself with the sheets. He would always tell me his hands were cold and that first time I thought he was going to blow into them like most people do when their cold so it was a shock when he put his hands between my legs and brought them up the way. I stiffened like a corpse and tried to close them as tight as I could, he told me I was lovely and warm and I learnt quickly that if I had ever to meet him again I had on my jeans. He was the older person here and again he was a person who was to be respected in society, I hadn't a clue who or how to tell those close to me what was happening. I only found out later on when Dr. Delap did an examination a few years later what a stomach exam was really like and doctors did not do those things. I didn't speak to anyone about it as I felt ashamed and that it was all my own doing, later I was to become depended on a drug that I thought was a wonder drug as I escaped my pain for a few hours when I did get it.

This doctor realized I was becoming reliant on the drug and took full advantage of me in regards to it and would always check my belly before he would give it even when I would protest that my belly wasn't sore. I learnt later on in life this doctor did something similar to someone who was a little older than me but she was stronger and slapped him in the face and walked out of his surgery. I felt for year's huge anger towards this man and part of me still does because he and that other doctor in that hospital would affect me later in life with the person I love most and the one I would marry in years to come. It was something that stayed in the back of my mind for years as I felt it wasn't that bad in other people's eyes and that they would probably laugh at me for even bringing it up, but yet Reading the paper that day I realized he had crossed boundaries just like the other doctor that should never have been crossed.

I have great sadness in my heart regarding both situations that I didn't do anything about them and let those individuals get away with something they shouldn't have. I will regret it also for my daughters as I hope they will understand that their Mum was weak physically and mentally and will not judge me for not being stronger. and fighting for my rights to not be abused by anyone no matter what their status is in life ever again.

These moments in my life I felt that if I was not sick I may have been stronger as a person and I hate to say it but I do blame having M.E. for putting me in those situations. I know others will judge it differently but for me I felt this disease brought more sadness into my life than just the symptoms of the disease itself and I'm not going to feel sorry for saying it out loud any more.

Just because it's not the right thing in other people's thoughts, They are lucky they don't have to live in this body of mine, broken and painful as it is. As for that drug that I thought was a wonder drug I came off it and it was a difficult thing to do but I knew deep down it would not have helped me and I didn't touch it for almost 10 years.

When I was having my first child my disease and the pain of it and the labour pain combined was horrific and I was offered the drug to help the pain and I told my team about my fears about getting hooked on it again. They were amazing and said I was in a controlled environment and that if at any stage I didn't want it they were there to help me and something else could be tried.

I only to this day take the drug in extreme cases after an operation or if I really need it after some of the harder treatments that I would have to get later on in life as the pain for a few days was and still is overwhelming that I had to ask my team for help on it and they suggested I take it if I need it, I can say that it might be just one injection three to four times a year I will ask for it to help me get through the pain.

When you are sick you will cling on to any drug that holds out any promise of curing your pain. Later on in life I learnt that other responsibilities that were given to me in life meant more to me than very strong medication and thankfully today I use the lowest dose I can so to take care of both myself and the special gifts God gave me in life to look after and that was the path that I choose for myself and one I hope to continue with God's grace.

I have to thank Dr. Shannon here my local doctor now in my life for all his time and efforts in helping me and my family with my disease. He has great compassion and shows great care towards me and my family always, I am forever grateful to him. Also here in Donabate I have two great chemist's I can walk into if ever anything is wrong with the kids, Musa or myself. In Life pharmacy, under the care of Jane Brennan who knows me better than I know myself. She is a great person and every one of her staff members go above and beyond in helping me and my family out with whatever may be troubling us at the time, with whatever is ailing any of us, thanks to all of them, and to all the staff in Donabate pharmacy under the care of Nuala and all her amazing team many thanks also for their kindness it's great to have people who back you in life for just being you!
Chapter 8

MY TWO LIVING SAINTS IN THE WORLD AND A LIGHT THROUGH THE DARKNESS

After my disaster of lost love, I was falling apart and the strain of almost reaching my dream of getting into NCAD collage my body couldn't fight any more, my symptoms were getting worse and it was decided I be referred from my family of care at St. James hospital to another. It was suggested I be moved to the pain clinic in St. Vincent's hospital at Elm Park under the care of a Prof. Declan O' Keeffee. He was to become one of my living saints here on this earth.

For me this was a very tough transition as I hated change I still do. I remember the first time I saw Dr. O' Keeffee he was like a giant to me and had a loud but distinctive voice. I was quacking in my boots on that first visit, he came out and called out miss "Triona Bonner Badmus please to my rooms", it echoed all over the place. Yet this man was to become my life saviour. I was giving up on myself at this stage. I had felt up to that time that all doctors had given up on people with M.E., and they didn't want to have anything to do with me. To all but a few all that I was expressing to them about the disease was all in my head. Here now finally was a man who believed I was in a lot of pain. M.E. was written in my chart along with chronic fatigue, and later other doctors would add their own ideas but only Dr. O Keefee's mattered to me. He could see that my muscles ached and twitched. So here my new medical life began under the tender and very watchful eye of this gentle giant a man who helped me cross medical bridges as well as human and family bridges too.

Here he began to try his best at trying to control what was happening to my brain and face, where the pain had become so intense that when my jaw would lock I started to break my back teeth again. So for the next two years he would start me on a program which included injections into the face and head so to slow down the muscles and try ease the pain in this area. Some days I would get small doses of stuff injected almost 10 to 12 of these injections into different parts of the head and face. It was extremely painful getting it and took a few days to settle down. I had to have someone with me after the procedure as it was painful for a while and it took a very brave man to stand by me at this very difficult time of my life. I guess it would be time now in the story to introduce the second saint who took on this next step in my journey of M.E. with me.

A few months previous to starting my treatment in St. Vincent's I went out to a disco that I hadn't attended in years due to the illness. It was in Gweedore, in County Donegal. It was the first time I had been out in almost two years and I had my partner in crime with me Mary Boyle. I was also with two other very good friends at the time Kathleen Boyle and Cathy Ham. As we danced away that night I saw in the crowd a "Coloured man", I was very intrigued as was everyone else because it was something we did not see often in our County at that time. By the time I got to see him he was walking away in the arms of a girl. I went to get a drink at the bar for myself and the girls and took another look at the dance floor on my way back to our table.

There out of nowhere stood this very tall and handsome "coloured man" He was with some more of his friends around him. He caught my eye immediately, I really can't explain why but Something just clicked And I remember saying to Mary Boyle I so like that guy over there. With that another song that I loved came on and out we all went to dance and I forgot about the tall handsome man. Little did I know what Mary was up to! As we danced away all of a sudden when the music stopped Mary turned me around and said to the tall stranger" This is Triona would you like to dance with her?," I nearly died, and if the floor could have opened up there and then I would have dropped down. Also to my horror the slow set came on and he asked me to dance and with shock I said yes. As we danced I could feel over a hundred eyes set upon the two of us,  A scared feeling ran over me as I knew people were judging me over who I was dancing with. Yet this tall man God love him I couldn't for the life of me pronounce his name was kind and very patient with me and his large brown eyes were beautiful to look into. He spoke great English and after the dance we sat down to talk still with many eyes following our every movement.  He was so easy to talk to and we just clicked that night and before I left I got a kiss from him, he had the biggest, softest lips I had ever kissed and he was so gentle. With that we had to part, I gave him my number and went to leave and as I did he said something I'll never forget "Someday I'm going to marry you, God willing".

My heart did a million summersaults in the taxi home but I had Mary shouting in my other ear that she hoped my family would not go crazy when they heard who I was dancing with that night. Of course Mary was right I was going to be in a lot of trouble for just being seen with him let alone kissing him, yet I was left in awe of him and I asked God to let us somehow meet each other again.

The next morning the shit hit the fan as they say. I was told I was never allowed to see him again they didn't like that he was coloured or anything else about him even though they didn't even set eyes on him. That was the times back then, I was told to ring him and give him their good news but Musa refused to give up and asked me, no pleaded for me to write to him instead. He was not letting me go without a fight. On my end it was going to be the first time I would stand up to both my parents and say I was going to see him again as I felt the rest of my siblings had their lives and I wanted to have one too. With great reluctance they said I could see him in two weeks but fate was going to step in once more and stop it from happening.

Musa and all the other asylum seekers had begun to become very sick with all the food they were given, their bodies were not use to it and they all started to become quite ill as local people were not sure what kind of food they would like and their bodies could tollororate, and it was decided that they should all be moved back to Dublin to be placed somewhere else.

Musa and some of his friends were placed in Bray and at the same time I was going to St. Vincent's to find out about my treatment for my face and head. I saw Musa a few times when I visited the city but only for short periods of time in the city centre. Our relationship began to get serious but there was still not much joy from my family's end, they believed we were doomed from the start because Musa was black and a Muslim and I was white and a Catholic, To every one we were too different But yet it was these differences that made us more attracted to each other. I also made it clear very early on that my religion meant the world to me and that I was not changing it for any man. It was something we had to face on his family front too as I was the first white Catholic to be brought into his family.

Our families both struggled with this greatly in their own ways but later I will explain how a Catholic and a Muslim learnt to live with each other's religion, cultures and demands of our world that still tries to pull us apart with its indifference.

As my treatment started for my head and face my mum would have to start on another battle of her own and a very scary one, as she had found out she had breast cancer. In my early twenties I had found the first lump on my right breast in the family and came up to an amazing doctor in Dublin in a place called the Laser centre under its great doctor Dr. Leaghy. He lasered away the first one but a year later it came back and mum had one too so I took her with me to get it seen to, it was here mum found out her devastating news. Thank God and only he that Mums cancer was caught early but she had to go through chemo and radiotherapy a few times with some gruelling side effects.

As she started her battle I had to start my own of getting 10 to 12 injections into my face and head every two to three weeks. Both Mum and I needed someone to be with us for our treatment so Dad looked after Mum and Musa asked my Dad could I stay with him for 3 days every few weeks as mine was so painful that I found it very difficult to do anything after them. Dad agreed as he had his hands full with taking Mum up and down from Donegal to Dublin to get her treatment too. After each of my own treatments I would stay with Musa for 3 to 4 days then go back to Donegal to help my big sister Mary to look after Mum. This began a journey for poor Musa that I was truly sure he would give up on me like so many before him did. I was not sure he was able for the pain and discomfort I would have to go through plus I hated him seeing me in pain After each treatment.

Here another journey began, a few days with Musa then home to help look after my Mum as best I could with my sister Mary. I did my best for Mum, at the time she kept her distance as she was going through her own hell. I know she was hurting in the most extreme ways and it was very hard to look at her suffering as she was, and it broke me inside that there was nothing I could do for her to ease her pain, at the same time I had to push through my own treatment no matter how I felt.

Then one night in Bray as Musa was taking me out for something to eat, he suddenly was down on one knee. I thought he had pulled a muscle or something but instead he asked me to marry him, I was so glad I was sitting at the end of the bed otherwise I would have hit the floor with the shock.  I thought he was nuts!

I kept telling him he would be marrying damaged goods as I was referred to by someone in the family at that time, I told him he deserved so much better in life as also there was no guarantee I would ever have children with all the medicine and treatments I had over the years. I pointed all this out to Musa and I said to him he would also be marrying M.E. too, thinking back to that night and seeing his face with me giving him all negatives about me it's a wonder he didn't close the ring box and run a mile in the other direction. He stopped me talking and said he loved me and everything that came with me.

I looked in to his eyes and said Musa I'm so sorry but the answer is going to have to be........................YES! He nearly died when I dragged it out on him, here now I had a man who truly loved me for the first time in my life and he loved the good, bad and sometimes the very ugly parts that came with me. For the first time in years I finally felt safe!

As my treatment was at a stage where they didn't know if it was going to get worse and Mum having her chemo we decided to get married in secret as to not upset my family at the time and also if I'm truthful I didn't want them to stop us either as I felt they still hadn't got to know the man I fell so in love with. We went to Wicklow to apply for a marriage cert, and after a few weeks a date was set. We didn't have much money between us but I got what we needed it wasn't fancy but I was told I looked like snow white that morning as my hair was short and in a style like hers. I told no one at home the fear of being found out was nerve wrecking and over whelming, we had two amazing friends who were our witness and my rock, it broke me inside not to have my family there but Musa was my true and only love and

This was a decision in my life I was finally making for myself, one where I didn't feel I had to have any ones permission as he proved to me his love for me and no one else's opinion mattered, we were at a stage he was nursing me after every treatment, when everyone else had run for the hills with this brutal disease, Musa took it head on and loved me through it, I loved him so much. So on the 25th of April 2001 my heart was given to him and I knew in my heart I was doing the right thing for both of us. I was scared even after the ceremony that my family would find out and with Mum still fighting her cancer and I fighting my own battle we choose to keep it a secret from everyone else so to protect them and ourselves too. I became Triona Bonner Badmus. I never lost the Bonner it meant too much to me.

As time passed and with the amazing help of my brother I finally told my parents that we were married and Yes it came as a shock But at that stage in my life Musa had proved to them all that he was there to stay to look after me. They could see finally Musa had loved me for me. To my surprise and my delight, we got a second chance at having our marriage again and blessed in my own church and it was in front of my family, friends and friends of Musa who travelled to Burtonport for our very special blessing.

Daddy walked me up the aisle I will never forget it, it meant so much to me to have both my parents there for our blessing with a wonderful priest called Fr. Jimmy Shields who was holy and accepted my husband for his religion and welcomed him into my church that day and all his friend of many different religions. I wore red that day as it was in December I did feel sorry for Musa not having any family in Ireland but mine made up for it that day and I thank them all for being so good to him and his friends that day. We ate at the most amazing seafood restaurant in Burtonport called the Lobster Pot, my thanks go out to Geared Kelly and all his family at the time who looked after us so well that day. I have a lovely photo of Dad and I sitting in a booth talking, I remember him saying he was glad I was finally happy and also if he drank too much he wasn't far from home. Finally, we got our day of celebrating our love in front of those we loved so much in our lives, we were truly blessed. 
Chapter 9

THE BREAST OP

As I have mentioned before in my early twenties I had two lumps removed from my breast with great success at the laser centre, when the third one came there was a lot of scaring tissue and it was decided it should be removed under general anaesthetic in a Dublin hospital. On the morning of the operation I was very scared and very apprehensive and rightly so. When I got to the hospital that morning I was told the surgeon had changed his mind on my case and decided to use a local anaesthetic This scared me to no end.  I was put into theatre and what happened next I have never forgotten. First the Dr. asked the nurse for the local anaesthetic and he proceeded to inject into my right breast with the needle. Suddenly the anaesthetic came flying out as it hit off the scaring tissue which had built up over time. The nurse went to give him more as not nearly enough had gone in to numb the area. The Dr. turned to her and said Don't bother sure the patient doesn't know what pain is anyway With that so called disease M.E. that she has. Both myself and the nurse looked at each other in shock and without warning he cut into my breast, I can now say after all these years I still can see and hear myself scream in my dreams. I begged him to stop but he refused, he said he had started and he was going to finish the job. Thank God for the mouth guard that was given to me weeks before hand because my jaw started to clench in pain too and the nurse ran for it to put it in my mouth, as I screamed a Dr. entered the theatre to see what was going on and he was told to get out of the surgeon's theatre.

He continued with the operation and the pain was excruciating but I didn't have a choice, again here was someone in power and boy did he know it. He was dismissive of my disease Yet I was there for a breast op not his opinion or his thoughts on my disease something that I have to fight with all through my life. When the operation was over, he flung the lump to my left where there was a dish waiting for it. I was glad it was over but still he had to stitch it up and yes I felt every one of those stitches going in. As I came out of the operating theatre he whispered something into the nurse's ear that was taking me back to the recovery room.

As we approached the main door to the large room that awaited us she turned to me and said was not allowed to ask for any pain relief at the request of the Dr. Who had operated on me as he had said I was not entitled to it. I wanted to scream with the pain and the injustice of it all but who was going to believe me, I had gone down that road before and a nurse's word had stood in my way for justice before, I didn't have the strength to go through a complaint again so I lay there in the bed in pain as all the other women around me slept comfortably with their pain relief.

When the pain became too much I rang Musa and asked him to come and get me that I couldn't stick the pain any more. He was shocked and horrified at the behaviour of the Dr. and said he would come as soon as he could. As God would have it there was a change of the main nurses just as I finished my call to Musa and suddenly I found the main nurse at my bedside demanding to know why on earth I had no pain relief. I said I was sorry but I couldn't tell her why as I didn't want to get myself into any more trouble I just wanted to go home. She sat on my bed and told me to look around at all the other women who had the same operation as me and all were sleeping comfortably. I started to cry and eventually told her what had happened but that Musa was on his way and all I wanted to do was to leave the hospital. With that she got up and marched up to the top of the room and picked up the phone, I was shaking in the bed as I thought now I was in loads of trouble.

I couldn't hear what she was saying but the expression on her face said it all she was not happy. Within minutes she was back at my bedside with a syringe in her hand, I was very confused, she told me it was for the pain and that she was going to ring Musa and to tell him to leave me until the pain had eased. She was not taking no for an answer and as she gave it to me, she said the Dr. in question said if I needed more just to ask and also offered me a bed for the night which I declined immediately. She was so kind and looked after me for the next few hours She was my Florence nightingale.

When Musa came, he wanted me to make a complaint straight away, but as I told him no one would take it serious I was a woman that had M.E. and that's all they would see on my file and would not look beyond it no matter what was wrong with by breast my breast didn't seem to be the issue there, the misconduct of the Dr. would never be called in to question so again I let it go and others won. I thanked God for getting me through it and I thanked him for having Musa again in my life who believed me and who would stand up for me in life when so many others let me down.

You see no matter how far M.E. has come even to the present day there are still doctors out there who will dismiss you as a patient even if there is something else wrong with you, the minute they see M.E. on your file they dismiss you straight away as someone who has a fake disease and who doesn't deserve their time or efforts to help you. M.E. is recognized by the world health organization as a neurological disease and you will see this repeated many times but something I have to shout about just for some to finally hear it, I just wish all doctors would recognize it and actually read up about it before dismissing a patient who has it. With M.E. and all other disease's other things can happen to the body whither it's a lump on the breast, an ovarian cyst, a spot on the lung, a broken arm, whatever the complaint may be, doctor's need to treat these other ailments Just as they would with any other patient presenting themselves with it  And not judge the patient on the chart with M.E. written on it. We all deserve respect from the medical field no matter what other disease's we may have. It's all about RESPECT for one another and not blank out discrimination, just because you don't fall under a known disease well bloody read up on it as you would other diseases and give us the proper respect you would give to any other patient walking through your hospital doors. We are all humans who just happen to have a disease that some of the world still discriminates against.
Chapter 10

A BROKEN WING

Before the "revealing" of our marriage to my parents and also around the end of my two-year treatment I became pregnant against all medical odds I was so over whelmed at the prospect of bringing a child into the world the way I was with my disease but Musa assured me that I would be a great mum, that I had so much love to give and that he would stand by me. We were so happy and scared all at the same time. As I left Dublin to go home to take care of Mum, Musa said he loved me so much and at that moment in time

I felt maybe this was going to be my little miracle here on earth. A few days later at home in Donegal I began to have terrible pains and I started to bleed. I rang Dr. Delap straight away and he came over, I was about eight and a half weeks gone. He was amazing in keeping me calm as I panicked saying it was my entire fault this was happening even though I wasn't sure how. I felt like I had done something wrong and I was being punished for it. Dr Delaps words of support and comfort kept me going and gave me hope even though it was fading away. My sister Mary took me to Letterkenny hospital that night and waited with me till I had a scan done.

The scan showed that the baby was still alive And there was hope so Mary headed home. I didn't sleep much that night I prayed all night that God would let me hang on to this life growing inside of me. Morning came and I went for another scan, as I was being scanned the doctor had a very worried look on his face and suddenly I began to bleed out very quickly on the table, there was way too much blood, he turned to me slowly and said he was very sorry but I had just lost my baby.

There are no words you can put down in paper how at that moment you feel inside except raw pain. A dark sadness swept over me that day and it hurt so deep in my heart. I had felt a real through connection to the baby growing inside me and now I was left with such emptiness and raw grief I thought I would never breath properly again.I remember being wheeled back to my ward and being greeted by my Dad and baby sister Sinead. My dad asked the nurse was the baby ok and then looked at me, No answer would or could come out of my mouth It was as if I was in the middle of a terrible dream that I wanted to escape from.

The nurse put me to bed and got me hooked up to a drip and got me some pain control and eventually walked over to my Dad and told him that I had just lost the baby. He came over to me and told me he was so sorry and that he would get me some pyjamas, I guess it was his way of dealing with it. It meant so much to me to have Dad and Sinead there that day as Musa was so far away. Sinead helped me break the news to Musa which was heart-breaking and I'm very grateful to Sinead for helping me with that always. Musa and I felt we were in two different worlds and each of us just wanted to run to each other but it wasn't possible at the time and I had to stay in hospital for a few days. As soon as I was discharged Dad helped me get a ticket to Dublin and I flew up as soon as I could. It was only then in Musa's arms could both of us mourn the death of our first child. It was, I felt another cruel twist in my life as I always wanted to have a baby but never knew how I would cope but the love I felt in those weeks before I lost our child proved to me that maybe I would have made a good mum after all. Also it was another Calling card from God

To say it was possible to get pregnant even though for years the doctors thought it was impossible, I guess God always knows best. I feel to this day that we have a fine strapping lad up there in heaven looking after the rest of us all down here on earth. I talk to him at times of trouble and happiness and he showed Musa and me the light to the impossible. 
Chapter 11

LIFE, PAIN AND M.E.

I have been asked many times in the last 20 years or so what the pain is like with this amazing, unforgiving illness. It is here that things become hard to explain, for some you can tell them it's like a thumping pain from the top of your head to the bottom of your feet and they can sometimes relate to it as themselves having a bad headache, or falling on the ground and that sudden pain you get from the fall. When then I try to explain that there is different degrees of pain and types of pain that are associated with this bloody disease I get a look of disbelief so I tend not to go into detail with them.

Here I will try to explain that even some mornings before I open my eyes in the morning I am fully aware of the pain that my body carries within it.

It runs through ever muscle and nerves it can find and it makes them twitch with inside the skin. It's uncomfortable but over time you have to accept it, if it's my lucky day it will be twitching so badly you would be able to see it on my arms or legs.  Through the years I have tried to block the fact what it is doing to my body so I can get out of the bed, to get to the bathroom and then get down the stairs to make the school lunches for the kids (more about these amazing kids later on). When I'm finished I head to the stairs again to get the kids up and to get myself dressed and it's Here I battle the demon of the stairs most mornings.

Some days I feel like I'm going on a climbing expedition and I'm climbing the highest mountain in the world just to put a flag there to say I bloody got to the top of you! Some days I can make it to the top with just a little trouble every day is different that's the joy of this lovely thing. Then the joy of getting dressed starts, I do think I should have been a gymnast in another life as I have to do some crazy moves just to get on my underwear and then my jeans, if you were looking in through a window at my life in the morning you would be bent over with laughter at the moves I rock out just trying to put on clothes.

It's something that never goes away but something I will not let anyone help me with yet as my dignity is a big thing to me plus I would be so embarrassed if those close to me saw it too.  When you say to people that you are in pain all day you can see a look of shock and one of (what drug is she on?) or they say are you for real? That is so impossible. A smile can hide so much and sometimes that's all I have got to shield me from the ridicule you face with this disease every day. I get this all the time and sometimes I would love if they could walk in my shoes not for a day but an hour but then I feel guilty for even wanting people to go through this horrible disease. As every person has different pain thresholds so what I can handle in pain many could not and there are others who can handle more pain than I "I walk because I can... the bike when I can't" but smile I must.

The worst of my pain I have named it  "The Ice Pain". It's the only thing that comes close to touching on this earth that I can describe to others that they can relate to. Think of ice on top of your skin now think of it inside your body, it's one of the worst types of pain I go through and I pray it does not enter my body on a regular basis as I find it very hard to handle and cope when it does enter the body, I lose all my dignity I'm sorry to say. The good Lord does get me through these times but yes I question many times why I have to go down this path and I'm still waiting for that very all important answer. An answer I know that will come someday it's just me who is the impatient one. I do believe that things do happen in life for a reason even if we have no idea why? It's a question that is never ending and one that follows me every day. The worst thing about being in pain with this crap disease is that I look FINE! on the outside and this can be very difficult to handle over time so most days to protect myself I smile and say I am fine, as explaining it brings to much disbelief and hurt on my end that it's not worth it any more. All M.E. people will tell you the same. You get very tired of repeating yourself to the truth of how you're really felling inside so you bottle it and keep it to yourself in a way so you can hide the true feelings off what this disease is doing to you. This is so wrong I know and my one wish is that we can stand like every other disease and be recognized for what it truly stands for. As people who have an illness that's so over powering with not just the pain that's just one of many by products that come with this wonderful thing called M.E. I could do more chapters on fatigue, muscle spasm, slurred speech, brain fog, sight, hearing and smelling problems cognitive issues and so much more but I don't want to frighten you too much with the details. I guess like everyone I want the disease to be recognised as being a real disease a day I long for.
Chapter 12

MY MAGICAL LITTLE MIRACLES

As the end of my treatment for my head and face had finished it had thankfully started to calm the pain down and I was finally starting to feel the benefits of it at last. I told Musa I wanted to come of all my medicine slowly as I felt my body physically and mentally needed a break. Then without warning and with no intention on our part at the time I found out I was pregnant again. I was filled with terror, shock and pain. I felt I was on an edge of a cliff not knowing which way the wind was going to blow me. I was waiting for every movement of our baby to see if it was going to survive this jump in to the unknown. Pregnancy itself can be very tough on a healthy woman but when you have M.E. it's like a crazy tango dance that you do not know the steps to. My body almost treated my baby like a foreign body invading it and it tried to stop feeding the nutrients that it was supposed to take so to help it grow as a baby. It was tough on my body too but Musa like all men loved my curves and as he said it gave me a glow as he would call it I had other words for that glow and it was utter bloody fear Of what was ahead of me. The pain intensified to the shock of some doctors treating me because in pregnancy your body is supposed to release a hormone to help with pain in the body, my body didn't seem to get the memo on that one!

I feared every day for the life I was carrying inside me not only for its safety but also the fear of the many years of medication I had to take, how now would it infect the baby. Then after the 6th month I let all the fear go I had too, I was so grateful to God to let me carry it that far that every day after was a bonus. My due date was the 4th of June 2003 and I was HUGE! And in so much pain and discomfort I kept wondering if I could deliver the baby safely myself with a natural birth but I had to wait till the 11th of June for my surprise.

Was I prepared? (God no way), I don't think if you are sick or healthy you are ever ready for bringing a baby into the world. I was a day and a half in labour and I had to fight hard to deliver on my own but it was through God's blessing I delivered our lovely girl weighing in at an amazing 9 and a half pounds and I was immediately blown away by the pure love I had for her the minute I saw her. Then I started to cry, Musa thought it was tears of joy but I said no I didn't have an affair!

Musa looked at me and said what are you talking about? You see the baby that was put gently on my chest was as white as I was and as you know Musa is black. I was confused at the colour of our baby nothing made sense but I knew I sure didn't have an affair with anyone else, I was certain of that the only thing I could see on my daughter at the time was that she so had her Daddy's nose. Musa and the midwife looked at each other and laughed, and then the midwife gave out to Musa for not telling me what mixed race babies looked like at birth. Of course it slipped my husband's mind so he told me; he said that her skin colour would change over a few weeks. My first response to him at the time was I didn't deliver a bloody caterpillar!

Musa then brought her over to me when she got all cleaned up and turned her around to show me that she had a black bottom it was so unusual to see and I loved her so much I didn't have the energy to give out to Musa for not telling me what was going to happen. I have to say it was some fun introducing her to the rest of my family. My brother and his now wife and her lovely daughter Nicole were the first to see the baby. Derek went to pick her up from her cot and the shock on his face was priceless he looked at me and said "Triona what have you done?

Musa started to laugh but my bro was not seeing the funny side of it at all. Musa then had to take of her vest to show my bro, Lorraine and Nicole her black bottom. The laughter all around us was deafening and Bo being my brother asked us not to tell my parents or my sisters anything about the baby before they came, we did as he asked. The next day they all came from Donegal and Dad was the first to go pick her up, and again the shock on his face was the same and straight away he looked at me with very angry eyes and wanted to know what was going on, actually they were all angry at this stage and it didn't help that Musa was dragging it out on me. Musa finally then took of her vest to show her black bottom.

God bless the poor child at the time but it was the only way we could explain her colour to all. And as caterpillars shed their skin so she did too and she changed into a beautiful soft brown skin colour and later with an afro of hair that would stand up to any African woman of colour. Our daughters name became Sinattalahi, (zeenat-a lie) Edith, Badmus. Her name being God's beauty, and Edith the name after a wonderful friend I grew up with who was also taken to early from this world a friend who was someone who was beautiful on the inside and out and one day I hoped my daughter would carry her kindness to all she meets in life, as with my husband's tradition we gave her the name after eight days from when she was born.

Being a first time mother I went into everything blind as mostly all new mothers do, with my disease it challenged me every day and it began one of my biggest fights to date. It continues right up to the present day and beyond, it tries to knock everything I do as a mother down, it didn't even give me rest to even change a nappy on our daughter in peace, I was struggling like all new mothers with new babies not knowing if I had fed her enough, burped her enough, or was I holding her right it was always in the back ground keeping me on point as to who was the master of my body and it didn't matter now that I had a baby, IT was still in control. It was the boss and having a baby wasn't going to change any of that.

Having Sinatt also brought on a terrible fear of being judged by others as not being a fit enough mother and especially with having a disease people seem to think they have a right to judge how you parent your child. This fear would sometimes over take my life and I lived in fear that my baby would be taken of me by the authorities on assumptions made my people who knew nothing about my situation so I worked harder than most mothers to prove I was a good mother to my daughter. It was a terrible thing to have to go through as there was plenty of mothers around me who had babies the same age as mine, and even though they were struggling too none of them were judged as harshly as I was.

I now had defied the doctors and had brought a beautiful daughter into this world and by God I was going to fight harder to help bring her up the best way I could no matter what M.E. was going to throw at me. Sinatt was the start of a new ray of hope in my life against this disease and a Brutal regime of endless unforgiving pain.

I was in a daze like all new mothers but at the time I still had to go back and attend hospital again to try a whole new journey of treatments to help with the constant pain. I was looking after Sinatt on my own most of the time as poor Musa had to do his mechanic exams again as his own qualifations were not recognized in this country at the time and he had to pass them here if he wanted to continue as a mechanic. This was an extremely hard three years on all three of us. I made a decision early on when Musa went to collage to get out of our apartment everyday no matter how I felt. It was for my sanity too and we had to connect with others in the village we had just moved to before Sinatt was born we had to be part of a community for all our sakes.

Donabate was small at the time and it took me a while to get to know some people, but I always hide from them my disease as I didn't want to be judged on it but later down the line it came back to haunt me. Donabate is beside the sea which I loved and still do, it reminds me of home when I got lonely or sad as long as I could see and smell the sea it gave me hope. For the next one and a half years I struggled hard to be the best mother I could be to Sinatt and it did knock me for six but I got up and fought it every step of the way for my daughter.

There were many tears with the pain, fatigue, muscle spasm and twitching it was overwhelming that some days I could hardly lift Sinatt, I believe I had angels at every corner helping me with every task whether it was small or large. Also I'm a very stubborn person at times whom many people will tell you and I would not give up or give in. I wanted to prove to the world and to myself that I could be a good mum!

Then again without warning I became pregnant a year and a half after having Sinatt. Terror  Is the only word to describe my world at that time? I kept thinking how on earth could I handle two small children, I was just getting by with looking after Sinatt when one day I sat down and talked to God and asked him and begged him for help in coping with this second miracle he gave us. Musa would say to me that God wouldn't give me something I couldn't handle in life and that God's plans were not always what we wanted in life. He did help me and it's with his grace only, did our baby arrive on the 11th of December 2005.

He was kind to me in having both babies' birthdays on the 11th of a month as I'm terrible at remembering dates. This labour was very scary, my body went in to full spasm and the baby got stuck coming out and got both of us into a lot of distress, again we had amazing care in Holles St. hospital and they freed the baby and ran with it so to try and make sure it was ok. I lay there with Musa praying the baby was alive and was ok and after what seemed an eternity they wheeled the baby into us in an incubator and she was an amazing 10lb 1-ounce girl. I remember looking at her saying to Musa that we were having a boy did the nurses get it wrong he started to laugh as the whole way through I was convinced we were having a boy. When I finally got to hold her she was beautiful and most of all she was alive! As before we didn't name her for eight days but it took that long to get a name for her that suited her and we finally choose the name Aliyatt Threasea Badmus, meaning God's most high and Therese after the saint who helped me all through my life. This time around I was also prepared better for her skin colour and the changes that would come with it.

The next few years were both physically and mentally very hard and we moved again to a bigger rented house in Donabate, I was not for moving anywhere else as I had a train station that could get me to my hospital. As the kids grew in size and strength my disease started to get worse too. Trying to get the kids to playschool and school every morning was like a crazy marathon. I gave myself a pretend medal every day I got back from the school run and had reached the front door. When I closed that door my legs would wobble and most days I wouldn't make it to the kitchen, I would end up on the hallway floor not able to move with my body in spasm and in pain. I knew things were getting worse but I didn't want to go on higher drugs as I would not be able to look after the girls.

So during the playschool, junior and senior years of Sinatt's schooling and Aliyatt at playschool I tried as many treatments that they could offer me for the pain and everything else that came with it. I would travel early in the morning to get drips or whatever I needed at the time to help me, I took two trains over and two trains back as fast as I could so Musa could go off to work. I have no idea how on earth the two of us managed  at that time on our own it was such a crazy time and both Musa and I had family who just lived too far away and we just had to get on with it and make it work for the sake of our kids and I know there were many angels helping us because I don't know how else we ever did it.

In the middle of all that madness we were also fighting very hard for a council house here in Donabate as Musa was getting to a stage where he could not afford any longer the money to stay where we were. Musa had plans for us to move somewhere else but I said no I wanted to stay but there were no houses at the time but I kept telling Musa that God wouldn't let me down on getting one here, he was not as convinced as I was. again against enormous odds we were finally granted a house in Donabate.

God was our number one backer but we had also fighting in our corner some amazing people in the Green Party at the time under Trevor Sargent.  With him and mostly his outstanding secretary Madeline Farrely who without her constant help with all the paper work she helped me with over many years we would never have got the house. I'm forever grateful to her and Trevor's office. I was so not for moving from the area as I had my train to get me into St. Vincent's hospital for my treatment and some days I had to take the girls with me as Musa had to work some mornings and without the access I had here to get to the hospital I would have been lost. Donabate became my life saver, my home and finally a security blanket of sorts for our family.
Chapter 13

NEW LIFE

As I was approaching the end of 2009 my health was in one word "Terrible". It was at this stage that Dr. O Keeffee offered me a new form of treatment in the form of a neuro stimulator to try help ease the pain and also help me with my walking which was getting very painful doing the school walk with the girls. I thought he was crazy the first time he explained what was involved in the putting in of the stimulator. He said A box had to be implanted in my stomach wall attached to wires that would be placed around my waist in the inside of my body and then attached to two small rods in the spinal cord area which in turn would send tens like effect to that area and a signal to the brain to say there was no pain there. I thought it was too farfetched but the fact that it was a drug free option made it more appealing to me and I could use less drugs for the rest of the pain.

Before the main operation could be carried out you had to go through a trial run and rightly so to make sure it was going to work. Firstly, the small rods are inserted into the area and the cables are run out side of your body for the trial and they come to your waist level and are attached to a box that is still also outside of the body and is worn around your waist.  Sometimes I would forget the box was attached to cables and the poor thing nearly ended in the toilet on a few occasions. It was hard at the start to get used to it as I felt like the hunch back of Notre dame as the back area was well padded to protect the cables. The first time I switched on the box it felt extremely strange but comfortable and the next day I was on the school run as you had to live your life like before to see if it eased your pain level. Also I had to be careful not to get knocked into as I was afraid the rods would move. To my total amazement it helped with the pain. I kept a diary of how I felt over the days of the trail as was asked of me from the hospital before I left.

So after some days I went back with my diary in tow to show how I had coped with it and most importantly how much it helped with the pain. I was then put on a waiting list which felt like the longest wait I had for anything in life. When you get so close to something that can reduce your pain level it's so hard to wait for the real thing to happen. Then on the 24th of February 2010 I was on my way home from the school run with the girls when I was told I had to go straight to hospital to get my bed for the operation. I couldn't even go home to get anything for myself as The window for my bed was closing.  So with the kids in tow we headed for the train, I was so scared and nervous but I didn't want to show it as I knew the girls would get very upset and I felt bad enough dragging them into town to Musa so he could take over. When we got on the train I told them what was going to happen and they were very upset and sad, I tried to comfort them as best I could but I could see the fear in their eyes that they were scared I would not come home. Giving them over to Musa at Connolly Station was one of the hardest things I had ever to do. I told the three of them how much I loved them and travelled on by myself to Sydney Parade where I got off and headed to the hospital.

I signed myself in, I had no bed clothes or anything but the lovely nurses gave me a gown for the night. I had what I thought was someone on standby who promised to come in the next morning with a few things to help me out as there was a vomiting bug in the hospital at the time and Musa could not take the kids and himself in. I rang home to Donegal to let them know it was going ahead. Finally, I rang Musa and the girls before I went to bed their voices meant so much to me that night, to say I was scared was an understatement, I was Terrified! Also Dr. O Keeffee was sick and another doctor was doing the operation.

Next morning with God holding my hand and my angel by my side I signed all the papers that had to be signed and prayed that this was another part of God's plan for me. I headed to theatre and was put to sleep so you can imagine my shock when  They woke me up in the middle of the operation To see if I could feel the stimulator work and the pulse like wave go through the rods, as soon as I said yes I was put straight back to sleep thank God as it was such a weird feeling.

Then I woke up and boy is post op pain sore, it did not take long for my brain and my body to realize that there was a foreign body inside my belly low down and close to my hip bone on my right side. I rang my back up person as I needed a tooth brush and the other small essentials that one needs after an operation to make you feel like a person again. Sadly, that person let me down and gave me a really crappy reason for not helping me; it hurt me badly in so many ways.

I felt so alone And just sat on the bed in pain and cried my eyes out that I had no one to help me, I felt more abandoned there in that moment than I ever felt in my life. The person who didn't come had been talking to others that had felt I was not entitled to the operation in the first place and also I learnt they didn't think it was real or that it was such a big operation and I was someone who didn't deserve it in their eyes and still don't to this day, It's amazing how one text sent to the wrong phone can cause so much hurt and distress to the person who already is in so much pain after an operation, it's still very hard to understand how people can be so cruel to others in life especially when you love them so much. Poor Musa was also clearly upset on the phone too he couldn't leave the girls as they were finding it hard with me away as it was. Then two lovely elderly women who were in my room got up and one of them gave me her drink of rock shandy and the other gave me some of her biscuits, these little acts of kindness meant so much to me that evening that I'll never forget it. I myself was out of the bed within hours as it was recommended to move around so the body would get use to the stuff that was implanted in it and that it would not reject it in any way.

Next I was on my way home, poor Musa kept saying sorry after every ramp we went over in the road and there was many as the bumps hurt me so much I felt my insides were doing a tango and it was not a good feeling. To be honest I wanted to rip the damn thing out of me the following day as I was still in a lot of post op pain I was told this was a normal reaction but to me it felt so unreal.

Day two came and I was back on the school run, I was given the wrong information before I left the hospital and I should have rested more instead of taking the kids to school the doctor who had operated did not know I had children and in those first few days and weeks I did things I should not have done but I knew no different as no one told me to slow down and take care of my body. I believe for this reason it took me longer to heal and for my body to accept what was going on with it.

I also had to get use to my surroundings again as anything with a strong magnetic field could damage or hurt the stimulator, leads and rods. As nearly everything has something magnetic around it like the fridge, microwave, the p.c. discs, over and under cables for phone and fast fibre lines also would affect me if I was turned on and it had a strong signal. I soon had to become aware of everything and just be careful around it; it was a big learning curb. I also could no longer go through the main metal detector in an airport as this can damage me very badly or cause something worse so I have to carry a special card with me to explain what I have inside me and I get pulled to one side now and I get a hand held device on me and I get patted down also. Life now was going to be a lot different in so many ways.

Slowly my body began to accept what was in it and it started to calm down and so did I. It began to fit into my life with the girls and my other family duties. Walking to school finally began to be less painful and stressful for us all.

Life changed for me, it was a time where I could finally see light again at the end of a tunnel yet there was still a long way to go. I kept on a low dose of drugs with the stimulator so I could keep going with the girls and look after other things in my life. I am a very stubborn woman and many here in Donabate will tell you that as I have turned down a lot of lifts in the morning for the school run. What they didn't understand was that the walking to school was an achievement in itself for me every day. I know they didn't know this but it was something I had to keep to myself I didn't want the pity but all their kindness has and still does not go without notice and I thank them from the bottom of my heart every day for their continued friendship and the care and the love they show to the girls Musa and I.

Then in 2011 I got another shock from Dr. O Keeffee when he said he wanted to put another stimulator in to help with more of the pain as each one can only do small areas around the spinal area itself. I was shocked and scared once more and was afraid where he would put this box as I slept on my left side, I so didn't want it going in there as I was terrified I would squash it at night.

He assured me that this would not happen and I trusted him more than anyone else in the medical field and still do so I agreed to the operation. I also put my faith in God that at least He knew what was happening and he wouldn't have put this my way if he didn't think it would help in some way. So on the morning of the 10th of February 2011, I went in for my second stimulator where it would take a lot longer in surgery. This time around I was woken up again to see if everything was working and it didn't come as such a shock but still a very weird feeling. Post op pain never gets any easier and I left hospital that night but this time I took or should I say I tried to take things a little bit slower but it was very hard and all night I was so scared I would squash the box in my belly but again Dr. O Keeffee was right it didn't break or move.

This then became my new life I had a neuro and a spinal cord stimulator in and I would have to learn to charge the boxes' inside my belly on a regular time scale so the stimulators would continue to work. I felt like the bionic woman I have so many leads, wires and boxes in me and only a small amount of people know that

When I say I am going home to charge up my batteries I really do mean it. I can't run as fast as I use to and sometimes jumping over a certain height is a no go area but I'm privileged to have what I have in me helping me with my pain.

It has changed my life for the better, yes I still have to take drugs for the rest of the pain but I keep it as low as I can as the boxes cannot reach everywhere. I wanted to be a PROPER! Mammy to the girls to take them up and down to the school, sit down and go over homework with them, do dinner and if they have running or something else on I wanted to be there for them. These are the goals I try to achieve every day I know they are not much too many people reading this but to me to get through each and every day is a triumph in itself and sometimes I feel I have won the lotto but it is not easy. There are days I want to give up with the chronic pain this flipping thing can give you and the sheer tiredness that comes over you like a bolt of lightning, some days I want to curl up and sleep but it won't even give me the grace of even that as it still makes every muscle jump and twitch.

Feelings of not being a good mum and being able to bring my kids to loads of different things fills me with terrible guilt, also not being able for their friends to come over for play dates has to be one of the hardest things for me because by the time I get the kids home I'm wrecked on a Friday, sorry I am wrecked every day, I'm just about to fall apart and I don't want the kids friends to see me like this, as I know they will judge the girls on it and it would break my heart. It takes a lot out of me for a play date but my daughters understand but as their mum I feel I let them down big time in this area I hope later in life I can make it up to them both. I tried a play date just a few times and it didn't go well, one girl asked me Why I didn't do all the stuff her mum did

On a play date it was heart breaking for me. Sadly over the years the girls have been left out of party invites, cinema play dates and much more because I could not do playdates. One mother informed me one day that my lack of asking other children to our home was not impressing other mothers and they felt I was a lazy mum who didn't give enough good times to my daughters and that I should be ashamed of my parenting skills. Believe me I wanted to scream at her that day and say, "Try living in my shoes for a few hours and see how you get on with a play date", but I backed away ashamed of myself as a mother. A part of me felt she was right that maybe I hadn't given the best of things to the girls but frankly all I could give them was my love and my time and to this day I pray it was enough, but to those mums and others who thought I didn't give the girls many outings here and there and not the big huge birthday parties you gave yours well my guilt will live with me forever.

They girls don't see me as being sick so they tell me; they say I'm their Mammy who they love. They have the most amazing kind hearts and we are like the four musketeers. I live and love for my children and my husband who without his guiding light sometimes I still would be living in sheer darkness. My family are the greatest achievement I have in life to date

I'm extremely proud of both of my girls and I'm blessed that God gave them to Musa and I and I'm truly grateful for my soul mate in my husband Musa whom without life would be unbearable. I'm truly blessed.
Chapter 14

M.E. and the brain

The brain is a powerful tool when it comes to having M.E., without it we all would be in a very dark place of residence. Imagination can be a fantastic thing while enduring this brutal disease as with it you can fly above your bodies' limitations, the pain it endures and the helplessness that drags its feet around you like a dead weight.

The medical profession sees our brains as our biggest downfall, and grabs hold of that none seneschal fact and says that our illness is all in our heads meaning that we made up the whole thing rather than the fact that not many have yet studied the facts from the World Health Organization that states that M.E. is a neurological disease. This fact alone has been out there for the last few years yet still young doctors coming in are still oblivious to their findings and it's extremely frustrating to all those who suffer from this illness to still have to go through the stigma that is attached to this disease.

In Japan in Osaka City University where they were studding the brain of M.E. patients they found inflammation of nervous tissue in widespread brain areas. Also a Prof., Jose Montoya from a group in Stanford University School of Medicine has published a scientific report containing some striking results which complement the Japanese findings. Yet all this amazing information goes unnoticed by the rest of the medical profession even though it was widely reported across the world, including the New York Times blog which pointed out that people with M.E. have severe difficulties with this disease. Another great result in trying to find out the causes has come to light recently in another big report into the functions of the gut in M.E. people and the abnormalities it has found, more evidence to prove that this is a very real disease.

So for people like me I use my brain for an escape route into another world where I don't have any symptoms at all, I am as they would say Normal! I can transport myself to a place where peace and harmony reign. There I can rock climb, skydive, scuba dive under the sea and travel to far of countries with ease to places like India, Asia, Africa and America, or even something that you the reader might think as less challenging as having loads of my kids friends over for a major play date and having the energy to be in the moment and enjoy it with them. That is something in the future I pray will come through for my girls even though they never complain about it. It would also be great to have the brain fog to lift and not loose half of the conversation that is told to me every day. For me as long as I can picture something I can't achieve here on the ground level of life but I can at the upper level then the possibilities are endless and

There is hope down that long tunnel of despair  that follows you with this disease everywhere. I find that when I can contribute to something in life I feel I am more accepted in life by my peers. The reason I bring up the brain as a subject matter is also that in some very extreme cases M.E. has taken lives, in 2006 in England a beautiful intelligent young women lost her life to M.E., in her inquest supported by her mother's unwavering instinct the coroner ruled that the 32year old had passed away of complications due to myalgic encephalomyelitis (M.E.), a land mark verdict in itself in England. A neuropathologist told the court the young women's spinal cord was inflamed, with three quarters of her sensory cells displaying significant abnormalities.

There are more cases like these out there but they are rarely spoken about yet these amazing, wonderful and brave people should never be forgotten in our prayers. They fought a battle with this disease that thank god not too many of us reach that severe side of M.E. yet one that brings thousands to the brink of it each year. Why certain doctors don't see what this disease does to adults and children alike makes me so angry that it has brought me to this stage in my life where I had to try and fight for my rights as well as millions of others out there. It brought me here today to this point where I am sitting at a pc for the last nearly three years trying to write this so people will stand up and take notice of this disease, and respect it for what it really is and most of all respect those that have to walk in the bodies they are crippled with it, if not by physical wipe-out or mental exhaustion or by both.M.E. is not just fatigue its physical and mental exhaustion  severe muscle and joint pain, high heart rates, nausea, dizziness, low blood pressure, difficulty breathing, IBS, fever, sensitivity to light, noise, touch, foods, chemicals, brain fog, poor memory and concentration to name but a few of its amazing side effects. 
Chapter 15

M.E. AND RELIGION

As you have gone through these pages you will pick up that without God I would not be writing these words let alone been able to give something to my husband and daughters later on in life as a thank you for their love and support. It takes a lot these days to say you have a faith in this very mixed up world of such hate that is running through it. It also takes a lot to say I am married to a wonderful Muslim husband even though I'm a Catholic.

Having M.E. gave me a window into this world that I don't think I would have got had I not been sick. I see in my world today that there is so much hatred towards our fellow men and women and sadly it's all inter linked to our religion and our own beliefs. So many carry out their hatred in the name of God. I don't get this at all. I see God as an all forgiving, understanding to all his children. He is compassionate, kind and gentle. I know you are asking yourself how after everything you have read about my life and the pain that is constant how I could come out with these words on God.

Well it's not all fun in my relationship with God, I have got very angry with him at times when I felt what he has given me was just way too much and still is and why did he give it to me and not to someone else, but who else would he of picked?  There are many in this world with the same disease, some worse some less. I know that many years on I have realized it is for a higher reason one I will never know on this earth, but don't worry I do intend on asking Him a lot of questions if I ever get the joy to ever be in his presence.

Sometimes prayers don't come easily to me and I just talk to Him instead about the little things of getting through each day the best I can. I don't get the answers I'm looking for, far from it, but he does answer it in his own way and in his own time which sometimes is not what I'm looking for but it does work out and it's done His way.

So for me to see people take God to a level where in their mind they can kill, shoot and maim someone in his name I just don't understand why? What I have learnt from my husband's religion is (Where there is life there is always hope.) and his imam is a man of compassion and knowledge just like my own amazing priest's, and when I find I'm lacking in faith I can go to either religion heads for their own opinions to help me pull myself through the dark phase I may be in. Catholics and Muslims are so close in their religions, yes we do have different views on certain things and we may pray differently but we are very much interwoven as religions go. Our God is their God. Faith whatever your religion may be or whatever your spiritual thing is I believe we all have a golden thread of God or whatever you want to call it in your life that binds us all together on this earth, one that is powerful that he tries so hard every day to show us.

War is so easy to start in this world, but peace is one of the hardest things to achieve, conquer and hold on to. I believe in this world of ours and I hope that someday you the reader will too. Faith is something that is very personal to each and every one of us. In our hearts we decide who gives us life, love the freedom to be who we are and much more. Respecting each other's religions and views is something the whole world is going to have to waken up to and respond with a bit more understanding and compassion otherwise we are on the road to killing each other into extinction.  Love is a powerful weapon but we need to use it more in this world towards each other and ourselves. 
Chapter 16

THE PAST RETURNS

Around the end of 2014 I started to feel a very unusual feeling in my face again one I hadn't felt in over 13 years. I put it to the back of my head but it got worse and sadly I had begun that journey again with my face and head, this time it was tougher as I had the girls and I couldn't run to bed after the treatment and shut the whole world out this time. this time I have to stand on the mountain and hang on for dear life, I had to beat it again to whatever end it would take me with God's grace and with his will. Dr. O Keeffee put me under the care of Dr. Stone first to try help with the injections into the head and face so to relieve the pressure, a fantastic doctor who sadly had to move on to another hospital, but then I was put under the care of another amazing doctor in Dr. Alex. I'm so grateful to all these wonderful people who try everything in their power to help relieve my pain. I'm also grateful to all in St. Vincent's hospital who without their care and understanding life would be so much harder, it's an amazing hospital to all. I will survive this set back again in my life I have too!

Also another change was coming in 2017 that I knew was going to happen but one I put, no jammed back to the back of my brain as I never wanted it to happen. Dr. O Keeffee was retiring and after him being my doctor for almost 15 years to say I was heartbroken was an understatement. As you probably know by now I hate change and he was my rock for years. When so many wanted to give up on me in the medical profession he never did. I am now in the hands of another Professor Murphy. So far so good and I pray God guides them with my ongoing treatment in the future years to come.

When I thought I had nearly finished this book, Sinatt was on her last few days of primary school and then heeding on to secondary school but here I am and Aliyatt is now on the same journey and is in her final few months of primary school. This project has taken so much out of me but one I am so determined to finish. Sinatt will now be sitting her junior cert with the grace of God. I have such pride in the fact that we have now got both our daughters to this mile stone in all of our lives as on their first day at school I cried not at leaving them in the school that morning but I cried thinking we would never get them to this stage.

So on the 26 of June 2018 we will be proud of both our daughters for who they have become and we hope that the loving hearts they carry with them will carry both through the next phase in their lives. I will be proud of myself and Musa too, it took so much to get them this far that only Musa, Sinatt and Aliyatt truly know what a journey we have gone through and continue to do so. I want to be there for all three of them for whatever is going to come our way next and I know that God is in my corner and he will get us through.

I feel at times I do a great injustice to this disease I'm ashamed to say, I lie how I'm feeling most days so I can protect my family and myself. I go out some days on my bike I'm one of the lucky ones but what most people don't know is that I can't walk that far that day so the bike hides my wobbles and the lack of strength in my legs, I do a lot of freewheeling with the bike it's my saviour most days and my pretend walking stick. Other days I walk because the pain is so bad and the muscles twitch so bad that if I got on the bike I would fall and hurt myself. It's a game of Russian roulette every day

On which item I have to choose for the day to get me from point A to point B. It's a game I wish I never had or have to play, I dream of being normal every day and look around at my friends who never think twice before they leave their homes in the morning. I have helped out for many years with the local athletics club that my girls go too. I do this so people will think I am a normal mother. I have put myself forward for many things in helping out with the club especially over the years helping out mainly at the long jump pits in Santry, Tallaght, and Irishtown. I have worked at these pits with some amazing coaches from all over Dublin and future. I spent hours measuring the kids jumps and helping out with getting the kids lined up and started. Unfortunately every morning after I never could get out of the bed with the sheer pain but It didn't matter because I was seen as someone normal not as someone sick.  I fear everyday of losing the power in my body and ending back in a room with four walls again and in darkness. I fight this disease so much to stay as NORMAL as possible that I know deep down inside I'm doing more damage than good. It's a very high price to pay just to be a mother, daughter, sister or friend with this disease and a gamble thousands with M.E. take to be part of a society that still doesn't recognize were even on this planet with this brutal disease. I fear I will lose this battle if I stop moving. 
Chapter 17

THE THINGS I WOULD SAY TO M.E. NOW!

The morning you opened your eyes Triona and felt the first surge of pain, I would say now to try and hide it for a while, I know that would have been impossible as from that moment It started a catalysed of events to a future not just to your own physical pain but also that of your own family and now in hindsight one I wish I could of spared them from the effects of the fall out that was going to come all their ways, if I could of magically stopped it, I so would of.

To those who doubted me and boy was there so many and some who I loved so much and still do no matter what was said, I would have said Triona Be strong mentally if not always physically and stand up for yourself and tell them all that what you were feeling in your body was as real as anything they were going through in life if not more severe and harder at the time.

To that person who would tell you that child birth was going to be the worst pain you would ever have to go through and experience and to grow up, I would say now after going through it twice It's a breeze compared to fighting this disease  Day in and day out. At least at the end of birthing pain you are given something so magical and amazing it wipes out the memory of the births, but with M.E. you're not so lucky with that pain there is no nice surprise at the end of the rainbow there.

To the person who told me Your damaged goods  Triona no one will want to love someone like you, boy would I love to stand in that moment now and say (Bleep you!!!!) there is someone out there for everyone in life no matter how different or broken you may look to some whither physically or mentally, colour or creed, love is a gift to be shared and given as a right to everyone in the world.

To those that thought that I would never finish Art College well I did! And I'm not too bad at it either especially free hand embroidery on the machine. I have produced some work in my twenties that a lot of people liked and hopefully after I finish writing this I will go back to it after a rest.

To those in the medical field who brought me physically to my knees with their insults and abuse about the disease and it all being In my mind,

I wish I could go back in time and say "you just wait a few years and see the amazing steeps your counterparts went to, too prove you all wrong in America, Japan, England and more countries that this disease was so real". You all would find out later that the World Health organization would declare M.E. as a Neurologic disease. In September 2016 the Daily Mail paper would publish a headline in its second page stating "Yuppie flu is not a con"  it would go on to explain that researchers in California had analysed blood of M.E./C.F.S. patients against healthy subjects and found out that there was distinct set of chemical changes in M.E./C.F.S. bloods to show changes to that of animals whose  bodies go into hibernation and the effects are so damaging that a lot of people have severe reactions that their bodies almost mimic that of the animals in the way they shut down and slow down and pain is present and any little thing is a struggle to do and cognitive issues are very much impaired. The blood test was almost 90% accurate and researches were hoping it would be available to all down the line to prove the condition and help with its correct diagnosis and help with new ways of treating the disease in the future. I wish I could track down all those doctors who slammed this disease as false and one that we were all making up in our heads. I would love to hand them over the new information and new research and watch their faces. I would love and want an apology  But I certainly don't think it would ever come my way. But I do live in hope.

To those who told me I shouldn't bring my children into the world because of their colour and because I wouldn't know how to be a proper parent. I wish I had the knowledge I have now in respect to my wonderful children, I could have stood up then and tell them

That yes I would probably make loads of mistakes regarding parenting and still do but doesn't everybody? I wish I had the guts then to stand up for the kids God was going to bless me with and say yes I might not be the greatest mum in the world and get everything right but by God I would learn and I would give every bit of myself to the kids and raise them with Musa to the best of our ability as we still do to this day with love. As for their colour I wish I had the guts to say It doesn't matter what colour a child is in this world as long as they are loved

By two parents nothing else should matter, there blessings from God. I kick myself even today sometimes at how stupid I was and sorry to say sometimes still am at how I let people put me down because when the pain is so bad you will take everything from everybody. I just happened to get someone who was black in colour who loved me for just me.

To Me: Triona, I wish I could of told you or showed you some way how to be strong in all situations you were in, but I guess that's what made you the person you are today. I wish I could off given you some tools then and even now to be a stronger person inside and not one who felt at times that life would have been better off without you in it.

I can now say to you Triona you had and still have so much to live for, but God does the hurt of pain and struggle with the effects of this disease really get you down, unfortunately still in the future it will continue for the moment. You have become a person who loves people no matter what and you will find it hard to turn off that love towards people who hurt you, God, to tell the truth you continue to love them anyway in the future even if it is from afar.

You will never be perfect far from it as a human you will continue to make mistakes some you will learn from but others no, you are that stubborn it takes a while for you to understand things in this very messed up world. You will find a way to love yourself. A journey that is still ongoing but one I hope you achieve someday. 
2017

It's 2017 and I found myself stuck on the kitchen floor this morning. I got the wash in the machine but I couldn't get of the dam floor. The pain was to strong and I was in too much muscle spasm. I sat there thinking what on God's earth I was going to do. The girls were in the sitting room but I didn't want them to see me this way, we already had kept from them for nearly over a year now that Musa has to help me out of the bed at night to go to the toilet and in the morning to get up for the day ahead. If he was going out to early for his own work he would roll me in a position that I could get hold of my rocking chair near the bed to pull myself out? When I eventually get out and moving It takes me awhile to get my mojo back working again. Yet here I was on the floor with no husband on hand to help.

I went crawling to the kitchen chairs asking God to get me up from there somehow and as always he heard my prayer just as Aliyatt swung open the kitchen door. Timing is everything in our house now. I don't want the girls to see me like this yet and boy will I fight dam hard to keep it that way.

What kills me inside is when I'm outside doing what every person does or try's to do as a working mother I am still looked upon as someone who could not be sick. I have no visible signs of proof on my outside body

To show the madness that is still relentless and never ending that is still going on in the inside part of me. I was asked a few days ago. "Triona you got your treatment a few days ago, you look amazing so the pain surely must be gone by this stage". I simply replied "I wish"  The shock on her face alone broke me into a million pieces, here I was still in 2017 fighting still at the injustice of my on disease again to people who I thought had come to an understanding about it. Put simply it was soul destroying and it shattered me all over again. Today turned out to be one of those black days that you wish would someday just disappear out of your life forever.

I am embarrassed to say because of the pain today I gave out to God first and then to Musa who was not even in the house at the time poor man was out trying to keep the roof over our heads. It was neither of their faults but I had to blame someone and as they say You hurt the ones you love the most

And some days I do by my thoughts I am so ashamed to say so. M.E. is a very hard struggle, one I have to keep fighting to get out of the bed, move and keep going for my family and some amazing friends in my life. I have one friend at the moment who is like an angel on my side, she doesn't care when I print this so called book (personally I don't think anyone is going to read it anyway) but Audrey Ennis is on one of my wings and keeps encouraging me to keep writing this and finish it so the world gets to know what it is like to live with this disease and how it destroys lives in its way.

I have friends who can plan months ahead with outings and Christmas parties, confirmations, Christmas, birthdays, anniversaries and loads more and here I am sitting and my plan is how I am going to get into the bed tonight without the girls seeing me struggling to get into it. This really upsets me and then people get annoyed with me when I don't reply to invitations to meals out,  Shite sure I can't get pass tonight in planning and I am dam sure I am not what's aping a group to say "Sorry can't make up the stairs at the moment and won't have any idea how I am going to feel on your proposed date" You must be kidding the group would think I'm gone in the head so I choose to stay silent. And in doing so I make enemies something I never meant to happen but what other choice do I have left.

Last week I was nearly at my lowest yet this year and I was so tempted to wear a note around my neck that said "In a lot of pain today, also very slurred speech, please do not be offended" But thought wisely that someone might think I might need to be referred to a hospital for special care. Sometimes you have to have some humour with this disease or it would robe you of your sanity and much more. Believe me tears can only last so long and even they dry up too cause there is nothing left in there to come out no matter how difficult the pain is inside you just have to keep rocking for yourself and the ones who love you back....
Chapter 18

THE SMILES OF ANGELS

Before I go any further I have to talk about friendship and M. E...... As you have read through these pages you have seen that it was and sometimes still very hard to keep friendships with this disease. A lot of people cannot just handle me with M.E. I remember someone saying to me, "You should walk in my shoes Triona, you have no idea how stressful my life is and I feel like our friendship is just not the same as you do not understand how (My) life is so stressed". I agreed with her that I didn't understand what it was like in her shoes and what she was going through as I don't have a window into other people's lives as some people like to hide what is going on in their lives and that is fine to a point. If in life you are stressed and going through a bad time it's at these times in your life that you hope and pray that those close to you would be there for you.

I have been there for people to the best of my ability and it hurts so deep inside when some thinks just because I'm sick and a stay at home mum that I don't have pressures in life too. We all struggle in life no matter what status we have in life. I fight this bloody disease every day and all the other stuff that life throws into the mix. I don't tell everyone about my pain I found out the hard way that most think because I'm out every day doing what I have to do I couldn't be sick. Others think that after my treatments why shouldn't the pain just disappear, but it doesn't. I try not to judge others on what they do in life so it bugs me and hurts me when I'm told I don't understand their lives. My answer is bloody explaining it to me and stop asking me to walk in your shoes I have my own. I would never ask anyone to walk in mine especially my friends. I would never want the people I love to go through what I have to every day. I love them all too much to want them to experience something as horrific as this disease on a daily basis.

I'm so blessed to this day to have Mary Boyle from home who has stood by me through thick and thin and still does to this day. She never judges me and just accepts me for who I am and for what I have. I might not see her as often as I like but if there was anything wrong with my family or I she would be here in a heartbeat and I'm truly grateful to her for that. She is an angel that fly's close to me always to keep an eye on me.

When I came to Donabate, God had already people lined up for me to meet some early on and some that would come later. Elish and Keith Bolieu were one of the first I met who made a deep impact in my life, Elish went to school with me at home in Dungloe Roses Community School, her and her family of amazing kids Isabel, Charlotte and Jack and her husband Keith got me through many a hurdle that I had to go through and helped my girls and Musa also, I thank them all from the bottom of my heart for their kindness and their love, forever grateful.

Others that came into my life which made it all the richer was my forever Italian friend Maria I don't know where I would be without her amazing calmness, when I'm losing my head with the struggles of the world I can always turn to Maria for calm and her gentleness, she gets me through things, love to her and all her family.

To Olivia and Paul Kearney and their kids, I'm not sure how I would have coped after my two operations if not for Olivia's great care and understanding, thank you for your friendship and to both of you for helping me with the girls when I got stuck a few times with the school run and other problems that would pop up from time to time, a big thanks.

To my walking buddy Lorraine Lawler, Thank you for your kindness.

To my other besties who I can ring at any time and say I'm stuck or I'm having a bad day there always there at the end of a phone or on the school walk always ready to help. To Antoinette Mac Kinley, Antoinette Fitzgerald, Roisin Honer, Sandra Mac Kane, Jenny Crosbie and all in Hazelwood thanks from the bottom of my heart.

To Niamh and Ryan, no words, you just so get me you are a true treasure Niamh I'm so blessed to have you in my life.

To Sandra and Darren Neville, The Minto's, Damien, Alison and family, Lisa, Paddy and family and Viv next door and all her family you rock woman. There are so many more who know who they are that without their kindness life would be so much more difficult.

For being a friend to someone with M.E. takes a lot of patience from both sides. I remember when I was younger and trying to go to discos with Mary, Dot Breslin and Geraldine Huston I would be all ready to go when my body had different ideas, and would let me down and I couldn't go, those nights were very upsetting and frustrating.  Don't get me wrong some nights I just pushed myself out the door no matter how sore I was as I wanted to be one of the girls and I didn't want to destroy their plans. This thread ran through my life with other friends who entered at different stages of my life and at times it was soul destroying there is no other way to explain it.

Another wonderful world of friends was opened up to me through my marriage to Musa. My life became richer with my African family like Anti Lati, Habeebat, ID, Shola, Tomie and Ester, thank you for putting up with me and showing so much love to someone who came into your lives with so much baggage, you loved me regardless.

To my family in Nigeria Anti Tutu and all her children, I have never known anyone in my life so far that is as selfless as you, you give your heart, soul, time and energy to all around you. You help others when most of the time you have so little yourself. You loved me from the first time you saw me and I was amazed at your humanity and humility to all around you and I still am. I truly believe your one of Gods special angels here on earth and may he bless you always.

To Granddad we had a rocky first meeting when you wanted me to become a Muslim. You saw I wouldn't change who I was and that my love for God was as strong as your son's and as I explained that we may differ in some of our beliefs but no matter how we both prayed we were still praying to the same God, you welcomed me into the family and called me your Irish wife which I still find funny today. Grandma put me on her shoulders and carried me along in life, Sinatt and I got to meet her, just before Aliyatt was born and I cooked some African food, her sons told me later that she was very impressed even if I did forget to put the salt in. She was also a strong woman of love and faith.

To Musa's brothers Bola, Toheeb, Sulaimon, Jihmo and all their families, I love you all. To the soul of Risikat it was an honour to help nurse you even if it was for a day or two before you passed away, you're always in my heart.

Finally, to the boss of the family Uncle Wale and Anti Nikki you took me underneath your wings and sheltered me with your love and prayers when I felt I couldn't go on, both of you and your amazing kids always stood by me and loved me always. Your children stand by me always and I am forever grateful.

To all the teachers at Saint Patrick's girl's school over the years who would help me around my appointments at St. Vincent's by giving my girls their homework maybe twenty minutes before school closed so we could go on the train.  My girls may not have been happy about the homework being done on the train but they never complained and I always felt nothing in their education should suffer because of what I have and that is something we work hard as a family to keep going.

To Mr. Michael, Miss Maria, two of the most amazing people I know who have put up with me for years going in and out of the school trying to help out in whatever I could and who had great patience with me. For all your kindness it will never go unnoticed.

To both of the school secretaries Miss Marion and Miss Modwena always there if anything goes wrong and boy does it sometimes. On one occasion it was the quick thinking of Miss Marion that got me into A&E when I was in a lot of pain she took over the care of the girls for me and gave me the peace of mind to go in, it's these kind little gestures in life that help me get through it.

To Mrs. Greene our principle who is always there if any problems come up and Mrs. O Neill her predecessor who both helped me out in some very dark days over the years. Both women have gone out of their way to work things in with my girls around my disease and have made me feel I was doing a good job raising the girls even when I doubted myself, very grateful to you both. You made me feel part of the family that is Scoil Padraig Cailini.

Mrs. Salmon what can I say about a retired teacher now, whose heart is always open to so many people. You are a wonderful human being, without you in my life I would have got lost on this bumpy road many times and the darkness that followed. You are a light that always gets me through, many thanks.

To the staff of Donabate Community College, the Principle and all the teachers and staff and especially Mrs Flynn for her amazing kindness towards Sinatalahi and our family.

To Chris, Katie and Amy Johnson, you are extremely kind and gentle souls. You have thought me in life no matter how difficult and cruel it can be that there will always be love out there and light to get me through the tough times. I am truly grateful that God let our paths cross, many blessings always.

To all those that pass in and out of my life here in Donabate who smile at me and not realizing that their smiles pick me up in my darkest moments.

To Christopher O Byrne you are a true gentleman and someone who has thought me so much in the last few years. You are one of the strongest men I know even though you have gone through a hell of a battle in your own life. When I'm lost with the trials of life you have the wisdom behind you to keep me going, I'm much honoured to have you in my life.

To Joy and Seamus who the first friends we meet here and who gave me a pair of wings to fly when I couldn't move on in life, your prayers saved me. I'm grateful for your love.

You see God when I think I'm lonely I look around at all these people you have already here for me, you had someone at every corner and I thank you. 
ACKNOWLEDGEMENTS

I am very aware that there have been many people in my life at very distinctive moments in my life's course. First I have to thank God for putting me on this earth even though the road I had to take was and is not in any way smooth yet his hands were never far away from me for each fall I took. I took many falls with this disease and the other things that came into my life too but God was not far away even though at times I thought he forgot about me, he always let the sun back into my life, he gave me the strength to carry on and still does. I pray he continues to guide me and look after me always.

To my dear husband Musa, there isn't enough good or kind words in the world to describe or to write on a piece of paper to thank you for loving me through everything we have been through, you loved me when so many couldn't, you didn't take on just me in life you also took on the mighty M.E., and stood strong against it for me. I love you very much and I thank God from the bottom of my heart that he let both our paths cross in the way it did. Musa I simple love you.

To my beautiful children, my son who is looking down from heaven and my two daughters Sinatt and Aliyatt. Girl's your mammy's angel's here on earth, you have been strong, kind and gentle souls and I pray to God you never stop caring for others always. Mum loves you now and forever.

To Mum and Dad boy did you both have to go through so much when I arrived in the world. I thank you both so much for standing by me always I know it was not easy for you many times. Thank you for loving me for the daughter you know, I'm forever grateful for all the sacrifices' you both had to make on my behalf. I love you both very much and it's never ending.  You are my light in the darkness.

To my bro, Derek sisters Mary and Sinead I'm truly sorry you all had to go through this disease too and also by not having Mum with you enough in the early stages of this disease. If I could change that part of your lives I would. I'm grateful for your love no matter how many times we may have argued in life about loads of different things I guess that is what siblings do. I love the three of you for that.

To all of your husbands, wife's and all my nieces and nephews thanks for all your support during the years.

To my grandparents now all sadly gone they shaped me into the strong women I am today.

To Gaggie we always had a special bond that no one could take from us I love you more than you'll ever know.

To my Uncle on my side, Aunties and all their extended families thank you all. To Aunty Martina thanks for doing so much for me and my family all during my life you were always at the end of the phone for so many problems to sort out for me. Love ya!

A special thanks to Aunty Mary Aloysius for never letting me lose my faith when things would get really bad your words at the end of the phone always gave me hope. Many blessings always.

To Mary Boyle my third sister you are one of just a few who truly rode this crazy ride with me from the start, you are still my best friend, don't know how you put up with me half of the time but you do, you never judge me you just take me for who I am and I'm truly grateful for that and I will always be. I wish you so much happiness in this world because you so deserve it.

Joe Mc Bride you are a treasure and a wonderful friend who has been there for many things that has happened in my life. Thanks to your lovely wife and amazing boys for letting me be part of your lives. Joe to your family Francis, Christine, Dessie, Frankie and Angela who always made me so welcome in their home.

To all of my Nigerian family may God bless you all, may he keep you safe, strong, healthy and forever in his heart? To my husband's Imam we have had many a conversation where we so didn't meet eye to eye on things but yet I have so much respect for you as many times when I was stuck in life's challenges you brought me and my family through it with your prayers.

To the priests of Donabate thank you always for all your prayers and kindness to my family, your words do sink in even though sometimes I don't understand I know God is always a step behind your words.

To the people of Donabate, my second home to each and every person who has shown kindness and compassion to me even though hardly none of you knew what was happening to me in life I'm truly grateful to you all especially all the business people who are forever kind. Many thanks.

To all in Burtonport, Co. Donegal all who are alive or who have passed on who not only looked after me as a village but helped my family and I get through some difficult times. To all my neighbour's at home a massive thank you to you all.

To the many I know I have forgotten in words but not in my heart you will never be forgotten in my thoughts. To Earl you got me on this road to start this book you gave me the kick I needed to begin a very scary journey that I thought I would never finish, truly God put you in my path for this reason and I thank him for it always.

To Brian in Donabate library who has moved to a new library, only for him I wouldn't have a clue how to copy stuff on to things he was the only one who understood what I was talking about even when I didn't know. To all the women there who were always welcoming with open smiles thanks to all the team there for putting up with me you are all stars in my world.

My wish for this book would be one where it will at least touch one person in the world to make them understand this disease so they can help people like me with support for research or just understanding and compassion for people with M.E. in this world. I also want people to understand that whatever life throws at you don't give up find someone to talk too, you are never alone. There is Faith out there in the world you just have to find your own. 
THE IRISH M.E. / C.F.S. Association

Many years ago when I was eventually diagnosed with M.E. or as it's also known (Chronic Fatigue Syndrome) and recently they came up with another name but I forgot it and also didn't think it portrayed the disease the right way. M.E. is the only word for me to describe my disease and is more acceptable for me as it defines the parts of the body that are effected more with it.I was a lost sheep in a field of many

When I got sick as there was nowhere to go to seek out advice on the simple day to day things on trying to cope with it. I was in sheer fright at what lay ahead of me. There was initial relief when we got a name for my disease but what followed was still a lot of confusion, anger and frustration at the lack of services that were out there to help people like me and the lack of knowledge from doctors made it worse. You are almost put in a firing range of doctors who think they know what they're talking about but clearly don't. They just want to get you as quickly  as possible to someone who can back up their theory that what you have is all in your mind and that there is no way possible in their minds that you could be suffering in any way with pain or other amazing ailments that come with this not so groovy disease.

Again God had two of the most amazing people out there who were already knocking down all the doors that were in their face's trying to get information for the rest of us. They were part of the Irish M.E. Association. They came in the form of a mother and son combo called Vera and Tom Kindlon. From the moment I made the first phone call to the helpline for which they have to do all the funding themselves as they haven't been successful in getting government funding. I got simple and honest answers to all the questions that were going around my head.

The support group was set up in 1986 by a group of sufferers. Tom and Vera joined in 1996 Vera read about a young girl in England Tanya Harris who had started up in England in 1994. The May 12 Awareness Day was started in America that date was chosen because it was Florence Nightingales birthday and it is believed she suffered from M.E... She also did most of her pioneering work from her bed and so it was decided that they would honour her this way.

In Ireland there was no newsletter as such when Tom and Vera joined the group, after a few years when Tom was able to sit up he started to get one together, at that point Vera did most of the work but over the years it has got bigger and now they get it printed and Ruth Nolan's (who has been bed bound for many years) parents put it in envelopes and post it out. My heart skips a beat every time I see their brown envelope coming with all the latest news from around the world.

Tom as I said has M.E. for a lot longer than me and he is almost all the time house bound. This does not stop him in his tracks as he is an inspiration to thousands of us out there. He has many letters published regarding M.E. in medical journals and one paper which was published and plenty more to come. He is a true fighter for the rights that M.E. people should have in life and the research that our disease truly deserves. He has also brought the association into the digital world by E-mails, Facebook and other techy stuff. His mum is truly amazing as she works tirelessly on trying to fundraise to get information to people like myself on what is going on in the world of M.E. and also by bringing world class speakers on the subject of M.E. into Ireland so we can find out what is happening in the world of research.

There loads of countries pumping money into research and funding to try to find better ways of getting a diagnosis and a cure for this brutal disease. I pray that someone in the government someday reads this as I have sent loads of letters too, during the years like many others but to no avail and maybe someone will start to do something for the thousands of M.E. people in Ireland. Across the sea in England, Scotland and Wales and far beyond they are doing research and helping their organizations to get information to those that need it, someday I hope it will happen here, it has to. All over Europe funding is available and loads of scientists are working very hard to try and help people like me to make our lives less stressful, painful and fatigue free. Tom Vera and all the other volunteers who work with them continue to highlight every year on the 12th of May as M.E. World Wide Awareness Day and continue to this for the whole month of May.

To help them help people like me please write to or donate to.

The Irish M.E. / C.F.S.

Po box 3075

Freepost F4439

Dublin 2

Maybe with your voice's we can get our government to finally open their eyes to this very unforgiving disease and to Tom and Vera my forever thanks always.

As I started to do this book my intentions were to always try with it to help others and I hope out there I have touched at least a few hearts and minds.

Love and God bless to all

TRIONA BONNER BADMUS......... 
