WHERE TO START...the beginning?, the end?, the middle?, the top??? Life is a journey with so many wanted and unwanted destinations along the way. This blog is written with honesty, love yet mostly straight from the heart with hope of reaching out to those like me that may have hit hurdles along their way. My aim is to give belief that "ANYTHING IS POSSIBLE"I would describe myself as a very quite and shy individual. I would consider myself a self conscious person , lacking in confidence and I am especially self aware of "what people think". On numerous occasions I would have heard people say "nobody gets to know Martina " it always upset me and yet this is a very true statement as I do not let people in nor do I open up. On a holistic/ self intuitive level this writing is not only about me but a writing to connect with people in similar situations or on similar life-paths.
This is a very difficult post to write yet to the individual suffering in whatever way, please hold on and embrace the lesson you are being taught and believe that all life's tests makes you "the better person you will become". For anyone reading this and thinking that this is complete b@@lshit and just an ego boost for Martina, I ask you to respect that my journey may not help or empower you, yet there is possibly one person to which my story will give hope. Please respect.
In a strange way I'm grateful for all my life lessons yet at the different times life did feel bleak, dark, black with no vision of sunlight or an end. Life would be so much simpler if we knew the date and time that things would get better!!
My personal story I would like to begin with an insight and the path which led to the year that rocked my life FOREVER! 2016 which I truly thought would be a year of small personal goals, turned into "my year of hell".
I started out by simply entering 2 Iron distance triathlon races, the first held in Galway in June called "challenge Galway" and the other called "Ironman Barcelona" in Oct. (to those that don't know what an Iron distance event involves it starts out with a 3.8km swim, followed by 180km cycle, followed by a 42km full marathon run)
During my training for my events in 2016 my dad was going through treatment for lung cancer. His diagnosis on good Friday April 2015 really hit my whole family to the core. Dad was always the 'fixer' and the fixer was suddenly broken down . At that time he was given just 6 months to live so my Ironman in 2015 I decided to pull out of. However, Daddy asked me one day after he came home from hospital how my training was going and I admitted my decision of pulling the plug. He truly was an inspiration that day and rather than looking for sympathy for his pain and battling his own demons he put that aside 'to be my father', and asked me to continue what I had started and complete the Ironman that July. That day I asked him to be involved in my training and thus he agreed to keep me a training diary which he filled out daily of sessions, tasks and memories. Those days also included days in Tullamore hospital for Dads treatments and appointments and these trips could often bear bad news. The trips were shared between my siblings and my mother would also come along. I look back and can say I loved my turn as these trips came with reward of time spent with him and supporting him. This diary I will treasure forever.
June 2016 with training at its peak for Challenge Galway . I had prepared well and I felt my body was strong. Hind sight is a wonderful thing 'something wasn't right' yet ego takes over to perform and achieve. I travelled to Galway the day before the race with Chris my training partner/coach/boss/friend/person I can scream at!!! Something wasn't right for a while yet I kept ignoring it and put it down to tiredness and stress of home-life and a busy day job. Chris had been feeling exhausted for sometime also and I think I felt as if we both were in the same boat of normal 'Iron training exhaustion', something many triathletes talk of. The evening before the race Chris decided to pull out of racing due to extreme exhaustion and sickness, as it turns out he was subsequently diagnosed with having Glandular Fever. (how he trained and raced as well as he did over those months previous we will never know, a mind of steel I reckon !!!)
I however' had also contemplated pulling out so many times leading up to that day yet now that he had there was no way I could too (what would people think syndrome!!). That night I got into bed in my friend Patricia's house and physically cried at the mammoth challenge I was facing and my body feeling so drained. At 2 am I woke in a complete sweat that I had to change my clothes, my throat was killing me and my head was pounding. It felt like some sort of a flu along with a hot flush. It passed with taking paracetamol as it had on previous similar occasions and I woke the next morning and continued with my plan.
The race itself I wasn't feeling on par yet was very focused that I had the work done. At 90km approx on the bike course my supporters crew passed me in their car cheering me on. I could feel myself with yet another fever as of the night previous and remembered seeing in Chris's jeep a packet of paracetamol to which I got them to give me 2 (I will be disqualified now for accepting outside assistance, sssshhhhh!!!!) Everything settled and I kept up my forecasted projected times. Coming to the bike end I could feel what felt like burning pain of a kidney infection. I got off the bike and quickly changed into my run gear and before setting off I popped into a port a loo. From here I knew I was going to suffer and for anyone reading this that has suffered from a kidney infection will understand. It hurt to pee yet it hurt just as much not to pee.....I only had a marathon to run!!!! I got through the run with many toilet breaks but with plenty of pain relief tablets (15 to be exact). One thing was for sure I never considered stopping. To my supporters that day I am truly grateful. I am still overwhelmed people gave up a full day to support me. Katie and James my niece and nephew were the icing on the cake.
I crossed the line so so happy yet the burning and pain I was experiencing was blocking out the celebrations. I proceeded to the medics tent and met a doctor and explained to him I felt I had a kidney infection and he wrote me a prescription. My family and supporters went to collect my clothing and shower items and to this day I can remember sitting in the finishers marquee and everything feeling like a complete fog, noises seemed so loud and tiredness overwhelmed me. I then realised I was yet again having another fever.
The next day I started the antibiotic and things I felt settled so I didn't finish the full course. I know the above race review portraits a horrible race yet in fact I thoroughly enjoyed all of it despite its hurdles. My biggest motivation on the day was getting my Dad on the phone when I was at 30km in the run, I had also done this in Ironman Switzerland and my No.1 supporter put a spring in my step with both of those phone calls with inspiration from just hearing his voice.
2 weeks passed and all was feeling good or so I led myself to believe. I took 2 weeks off from training and was preparing for the busiest time of year in work. One Sunday afternoon whilst working I was overcome with a fever, although these were happening mostly at nightime I continued to ignore them until that day. I went to the bathroom to wash my face with cool water and noticed the inside of my arms and my torso covered in a red rash. as previous I also had a strange sore throat. I called one of my colleagues and she too was concerned that the rash was not a normal heat rash. My head was splitting yet I continued to work in a whirlwind spin. Chris called into the cafe and I said I would ask his opinion. I would describe him as a person who 'doesn't hold back' and tells you as it is. He suggested calmly yet firmly that I ring MIDOC. I went straight away and met a lovely Indian doctor and told her my history etc.By now my rash had almost disappeared. She put it all down to a virus and gave me an antibiotic prescription to have on standby if symptoms persisted. Me being me I was delighted with the thought 'thank God I'm not sick'. The next 2 weeks continued much the same yet I don't remember noticing the rash again during that time.
I now was working with Noel Garvin for personal training/mobility sessions and really loving them yet things were getting embarrassing because I felt I was excessively sweating. On the 28th July 2016 The shit hit the fan!!!! I woke with what I would describe as a hangover from hell. The night previous I drank a can of Bulmers light (ONE CAN) and my head was spinning, pounding and sweat pouring out of me. I had a 10am training session with Noel and on I went (writing this I'm thinking ...you crazy bitch!) I somehow got through the session yet during it felt something in my left knee pop. not a muscle but more like a water balloon dull pop. I headed home and Steve my partner was home that day and I made breakfast. Still in my shorts I got up to go for a shower. It was as if my left knee was going to fold beneath me and I asked Steve "is my knee swollen?" he replied joking "no ya look grand". I went for a shower and after that I literally hobbled up the hall and said to Steve "I think I need crutches". His reply again joking "get on with it". I felt I had nothing to be concerned about and it was just stiffness from my training session. Steve headed away and I got my bits together to head to town, my first stop being the bank to withdraw money from AIB to lodge into a BOI account money transfer. I literally hobbled up along the street to the ATM and my mind went blank, I couldn't remember my pin code never mind my name. I tried again but no. I dragged myself back to the car and sat there in a horrendous sweat trying to figure out where I was and what to do. It seemed like the biggest decision of my life and I couldn't think of an answer or even focus. Eventually I figured out to go into the bank with ID and withdraw. My clothes at this stage were drenched and I must have look a fright dragging my leg behind me. I then headed from one bank to the other to make the lodgement. Coming out of the bank I met my friend Tina. Straight away she asked me was I okay and I proceeded to tell her I just hurt my knee. She asked me was I okay to get home and I covered my anguish over saying I was grand. I stood there until she was out of sight to discover I couldn't move. An old man on a walking frame approached from behind and insisted on helping me to my car (I look back now and laugh at that memory) I drove to my sister Joleene's house as she needed a loan of a suitcase . All I can say is thank f@@k that suitcase had wheels as I used it as a crutch to get into her house. I knew things weren't right yet I continued to down play. She insisted on driving me to the doctors yet I wouldn't burden her. To ease her mind I rang the doctor and got an appointment for 4 that afternoon and again I insisted I would be fine to drive. My fever/temperature had spiked and my rash now attacked my body again. Dr Geraghty was puzzled and concerned of my now enormous left knee, my rash, my sore throat, my high temperature and my visible unwell look. He wrote me a letter for A&E in Portlaoise and insisted I go immediately as he had no idea what was going on with me. He insisted I do not drive to which I told him my sister would collect me. I had no intention on calling her and dragged myself out to my car to discover a flat tyre!!! Things happen for a reason!!! I rang Joleene to come get me. Off I went to A&E and waited a few hours thinking " I feel so bad waiting in this queue when I'm going to be sent home" 7pm came and boom my body felt as if it completely shut down and I couldn't think or even speak, my fever burned again and now every part of me ached. The hangover was back and I needed to vomit. I got to the bathroom and vomited and crutched by my sister and now Steve and they got me back to my seat. I curled in a ball wanting to die. Steve got me 2 paracetamol from a nurse and 1 hour later I was somewhat okay, thinking there's nothing wrong now, the doctors will think I'm insane. Finally I was called and somewhat funny couldn't get up, I actually laughed as you would when you get pins and needles in your foot yet you know the numbness is only temporary. The nurse got me a wheelchair. I know now I was laughing to hide my terror.
I stayed in A&E that night after numerous bloods and other samples taken. I could feel what I describe as "my body shutting down" yet I kept thinking to myself they haven't told me there is anything wrong so I definitely must be okay. Later in the night I was hit with my worst fever , rash and along with that my whole body ached. It was torture to move. I was put on a drip for fluids, antibiotics and IV paracetamol for the high temperatures/fevers. I settled again after a few hours and somewhat slept with exhaustion until the same attack happened again later in the night. Everything worsened and magnified . The sounds of A&E that night still haunt me. During the night I was monitored very closely and I didn't even realise that I had doctors baffled. The following morning I was surrounded by a team of doctors again asking me the same questions over and over trying to find the missing piece of information . I was then placed under the care of the head medical doctor in Portlaoise hospital whom I personally knew as I had taken him months previous for personal training classes. It was an immense relief to have him looking after me and someone I could talk directly with as sometimes doctors "lingo" can feel very intimidating. It was explained to me that I had quite a lot of fluid built up on my knee with high inflammation markers showing in my bloods and signs of infection. This meant zero to me yet the doctors tone made him sound very concerned. The team of doctors contacted hospitals in Dublin with hope of getting an emergency MRI yet noting was being confirmed whilst again my symptoms worsened. That afternoon it was agreed and a release was signed to allow a sample of the fluid to be taken from my knee for testing. I could now only barely walk with the aid of a walking frame and every joint, bone and muscle ached so that I could barely lift the frame along in front of me. I was now lying on a bed in the corridor in A&E and waited until finally doctors came to me saying I wouldn't be going to Dublin for the MRI as my condition was far too serious to wait for the scan. Results were not back for the testing of the fluid yet later that evening it was confirmed that the drained fluid showed infection. I was to be Immediately transferred to Tullamore hospital for an emergency operation of a 'knee wash out'. The doctors believed I had a serious bone infection. I was taken that night by ambulance to Tullamore and my God was I scared. I was put in a ward for the night and left until early the next morning to be taken to Theatre. The surgeon explained the procedure would be done through keyhole surgery yet if infection was definite that numerous wash outs would be required over the next 6 months.
I woke from the anaesthetic and wondered why I couldn't move. I felt paralysed. I was now back on the ward and greeted by a nurse at my bedside taking my pulse. She reassured me that my operation went well and the surgeon would be with me shortly. I lay there lifeless thinking thank God that's over yet my gut instinct was wondering why I felt worse. The surgeon never came to me until later that evening and sat by my side and again I was asked more questions. She continued to tell me they found no infection in my knee and that samples had again been taken and tested yet with negative result for anything. The samples taken in Portlaoise which showed infection they felt were somehow contaminated by the medical team and thus showed an incorrect result. She sounded concerned and spoke with compassion and told me she had no explanation for what I was going through. She told me she was going home to research and to call some doctors in America whom she had previously worked with and reassured me she would find an answer. This was the Friday evening of the August bank holiday weekend and I was now being kept in for the weekend.
That weekend just seemed to go on forever, my knee that had been operated on was the least of my concerns. The most vivid memory of that time was that Friday evening after another fever attacked and my whole body weakened some more, my sister Joleene called to see me before she headed abroad on holidays the following day. I hadn't showered or even washed proper in a few days and she suggested helping me. It must have taken me 10 min with a walking frame to get into the shower room only 10ft away . I sat on the toilet as I hadn't the strength to stand as she helped me remove my clothes. I couldn't lift my arms never mind lift them over my head. I remember at that moment breaking down emotionally and I cried and cried and pulling myself into a semi foetal position I clearly remember saying "Joleene what is wrong with me, I think I'm dying", at that moment I was in so much pain that every cell of my body pained me and even crying ached. She somehow washed me and even brushed my teeth and I made my 15 min journey back to bed!!! I sobbed that night thinking I would never see Joleene again. I was now given a wheelchair to help me about but the ironic thing was I couldn't use it, never mind even manage the pain of trying to lift the nurses call button for help!!!!
That night continued much the same with fever spikes, my rash getting more prominent, very severe sore throat and chest pain which felt like a swarm of bees living and buzzing in my chest. I was continually being given 2 IV antibiotics, fluids and IV paracetamol and finally a doctor signed and agreed to give me morphine pain relief, the name of the drug escapes me now yet it was clearly lethal as it was under lock and key in a drug safe and could only be given by a doctor. Thank God for this drug although it didn't kill all of my pain but it did put me into some sort of a trance and a small sense of escape from the reality my body was going through. Blood samples and blood cultures were continually being taken along with numerous doctors visits throughout the night yet nobody could give any answers nor had I the energy or focus to ask any questions. The nursing staff were truly amazing and I am forever grateful for their care. The next 2 days I felt like a human pin cushion with the amount of bloods and samples being taken. Because it was a bank holiday weekend I just seemed to be the patient visited by each doctor on call along with new bloods, tests, x rays and scans being ordered by each. I of course was grateful for the care yet my body continually weakened and I watched my partner Steve and my family look on in anguish. For their sake I always tried to look stronger than I actually was. All bloods and cultures came back showing nothing only my worryingly high inflammation and white cell count.
My Dad with his strength gave me the strength to fight. He would visit me each evening and his concern was heart breaking seeing the pain and hard times he was going through himself. He still continued to be my Daddy and protector and kissed me each night before leaving followed by a goodnight text once he would get home. Each morning would be a text to see how my night was and I too would enquire of his. He never complained and remains the bravest man I've ever known.
Finally the bank holiday was over and normal doctors rounds resumed . That morning I was surrounded by a team of doctors. The doctors from the weekend staff handed over and explained my files. The lady doctor that had operated on me checked my knee and was shocked of my current state and compassionately took my hand and promised me she would find out what was going on. A full body CT scan was ordered for which I had to sign a release along with more chest x rays, heart scan, MRI scans and other scans I cannot even recall at this stage. These days were busy and yet nothing improved and my body was still in a semi paralysed state. I started to notice my fevers forming a pattern and always seemed to spike at visiting hours, 2pm and 7pm . I even started getting paranoid that it must be my visitors causing me stress and causing my attacks. Over the course of that week I still got no answers and continued to be doped with drugs and pumped with antibiotics.
Weekend no.2 in hospital and again doctors gone for the weekend. My right knee now started to swell up like the first. The fevers continued along with worsening stiffness and pain with each one. I got examined by a lovely doctor at 3am on the Saturday night. She was on call that weekend and heard of my case and took an interest. She specialised in throats and she thought possibly it was my throat causing the problem. She decided to take more bloods for testing and although I thankfully have no fear of needles I broke down crying that I couldn't take anymore needles, I was utterly exhausted. She tried everything to take the bloods but all the veins in my hands, arms, legs, feet had been exhausted so eventually she tried from my toe. I felt somewhat like a drug user with bruising all over my body from the samples taken. My partner Steve along with friends and family were hiding their concerns from me and remained positive to my face. However unknown to me Steve approached the team of doctors and nurses to air his concerns and demand some answers or plan going forward to find out what was going on. It was clear the doctors were baffled and could do nothing only keep me comfortable until they could figure out what was wrong.
Monday morning came around again and still no wiser. The teams of doctors started their rounds and the busy hospital Monday morning continued. I wasn't sure what doctor would come and see me and just prayed answers had been found with the midst of a new day. A large team of doctors entered the ward led by a doctor I hadn't seen around since the previous week. This doctor seemed very much in charge of everyone including patients. He went around to each bed and worked at speed. He seemed to give direction if patients were to be kept or he would question why they were still taking a bed . His name escapes me but he was the head of the hospital (I'm not sure of his title) He came to my bed and me being me panicked that this scary man with his directness and no bulls@@t approach was going to tell me to pack my bags and head home because 'nothing has been found wrong with you'. Quite the contrary. he was filled in on my history by the otherdoctors and my time in hospital and with the most gentle approach he slowed down and pulled over a chair. He pulled the curtain around me and asked the other doctors and nurses to leave. He sat very attentively beside me and asked me to fill him in on my story in my own words. He threw my file to one side as if that didn't matter. He never even glanced through it until after I had spoken. He asked me some simple questions and continued to tell me of his past years of working and specialising in Rheumatology, he felt he had an idea of what may be wrong. He stroked my head and told me I would have some answers by the end of that day. This doctor to me 'saved my life' and he sent a request for the Rheumatology team to come and see me.
That Monday afternoon Dr O'Rourke Consultant Rheumatologist came to see me. We chatted for quite a time and he tested and examined all my joints. I was at the time thinking this is a waste of time because 'Rheumatologists are for old people'!!!!! How wrong I was!!! He left the room and returned with "a tool box", he gave me a local anaesthetic in both knees and then proceeded to drain all the fluid from the same. This was excruciating but the speed he worked at I didn't even have time to feel shocked. He ordered more tests, x-rays, scans and asked me to keep note of my fevers and log re-occurring times and also to take photos of my rash. I truly believed he thought I was making up stories about the rash and hence took loads of pictures. He came to me the following morning and looked at my photos and my own notes. It was crazy that my fevers spiked each day at 11am, 2pm and 7pm and then 11pm,2am and 7am . Like clockwork I could now forecast getting a fever and the nurses were on standby ready with fresh clothes, paracetamol and fans.
For relief now along with the morphine he gave me steroid injections in all my joints along with my chest along with Verstatis pain patches, difene tablets, difene spray to be used when and where required. Finally things were happening but no definition of my state. Later in the week he came to me and discussed taking a blood sample which would be sent to France for testing. He explained that this test would only show a positive or a negative reading and not show severity , cause or reasons. I asked what was it testing for and the first time I heard the words "Adult Onset 'Stills' Disease". I signed a release for my consent of this test yet it would take 3 weeks to get a result. He explained Stills disease as a very rare condition (1 in a million diagnosed) which can affect children or adults. It is a condition that can remain dormant until adulthood for unknown reasons. It goes under the heading of An Auto Inflammatory disease. In adults onset is known to activate around the age of 35. It is a condition where the bodies own Immune system attacks healthy cells. It has the characteristics of Rheumatoid Arthritis yet along with attacking joints it also attacks muscles, tendons and organs. For me it seemed to be my kidneys and my lungs (memories of my race in Galway and my thought of kidney infection came rushing back)
My mind was very full after this conversation and I remained skeptical that Rheumatology wasn't what I needed as it was clearly for old people. I did what we all do when we don't know ......I googled !!! and low and behold Adult onset stills disease was everything he had told me and everything I had experienced. The following day Dr O Rourke started me on a very high dose of steroids. He reassured me that these steroids would help my body which was under attack by my own Immune system. I laugh at this now because "the only thing strong enough to fight me was actually myself" !!!
I hesitantly took the steroids thinking these are wrong for me yet I also feared the steroids because aren't they something used for cancer patients?? My Dad had been taking them throughout his treatments and weren't they going to cause me to look bloated ....by God they certainly did!! Michelin man comes to mind. Yet low and behold after 2 days of steroids I FINALLY FELT RELIEF!
I was now moved to a medical ward where my treatments and testing continued. I improved gradually and steadily yet I remained very much in denial of a diagnosis. The fevers had now stopped and the rash didn't show as often. I was anxious to get out of hospital and finally on my birthday , 11th Aug I got the go ahead to go home. My body felt completely drained and Straight home to bed. This was a very lonely few days as I hadn't the energy or ability to do anything but rest. Steve was back in work after being by my side continually throughout it all. I remember one morning after he left for work trying to figure out how I was going to get to the kitchen for a glass of water. 3 hours later I remember lying on the floor and between rolling myself and dragging myself along the floor I got to the kitchen. The pain all over was just too much and use of crutches put pain on the joints of my hands, arms and shoulders. I ate, took my steroids and things settled. I was in a very depressed state of seeing no end and as days went on I felt worse again and 1 day had a blackout where my vision went. I called my consultant and he asked me to come back to the hospital where I spent weeks having more tests, Ct Scan and other scans. On the Friday my consultant decided to let me home again and mostly because I told him of my Dad being very unwell. My steroids remained at a high dose and just before my release my consultant came to tell me the results from France were back. It was official I tested positive for "Adult Onset Stills Disease". I was relieved in one way and gutted in another. Rheumatology was correct after all.
During that last week in hospital my Dads condition went seriously downhill. He visited me on the Tuesday, he came into the ward in a wheelchair and at the end of my bed wiggled my toe and said "hows my teeney bopper"? (nickname he always called me). This is yet another simple memory I will have forever of Dad being my Daddy. He was hardly able to draw a breathe and here he was concerned for me. He remained strong for me and we both encouraged each other with our ailments over those days through calls and texts which I still have. My sister Joleene the following day voiced her concerns to me that he needed to be in hospital and I too agreed. That Wednesday morning I got Steve to take me to the oncology Dept in the same hospital where Dad received all of his care. He refused to burden anyone let alone the staff there outside of his regular appointments. I spoke with his much loved nurses and explained to them that Dad was very unwell and that he wouldn't come in for help. They phoned him and told him if he needed some help to come directly in. On the Friday after many texts and calls to him by myself and my family he decided to come into the hospital. I got released at 11 am that day and left everything in my ward with the nurses and went straight to the front door to meet Dad coming in with my sister and mam and we went to the oncology ward. We were soon to find out that Dads results of a recent scan were back and Dr. Naughton the Oncology doctor requested to speak with family. My sister Liz and I really didn't realise what faced us that afternoon. Dad was taken to a single private day room and unknown to him we went next door to the doctors office. Such a gentle man and how he does the job he does I will never understand. He brought up Dads file on the screen and a picture of his latest scan. He pointed out Dads lungs and yet knowingly we still sat there in hope of good news. All we could clearly see was one lung and then on the other side 'blackness' it was visibly frightening that such blackness could be so clear to us and we not in the medical profession. He proceeded to tell us the devastating news that he could only see Dad living for 3 weeks. He was very matter of fact that 3 weeks was his maximum time left with us. He asked us if we wanted Dad to be told and we agreed it was the right thing to do. He deserved to know, not for us but for himself. Dad in the meantime was being made comfortable by the nurses with medication and an oxygen mask. We came back to the room with the doctor and told Dad his results and findings. It was like the world had stopped, everything was spinning and yet this was really happening. We were still waiting for some hope that something else could be done yet the cancer had gone too far. Dad broke down crying and I still clearly feel Dad was crying for us and not himself for unselfish reasons he didn't want us hurting. It was agreed that Dad would be kept in for a few days until medications and home oxygen was arranged.
I myself at this stage was still unwell, yet the want to be there for Dad took over. I went to the hospital first thing each morning to make sure to be there to meet doctors etc so we could set a plan for Dads home journey and care at home. More importantly I thought back on the recent weeks whilst I was sick and how much a persons mind can over work with too much time to think, I didn't want Dad to feel alone. Daddy was released from hospital on the 10th of September and the next 2 weeks were hectic with visitors. It was like a constant flow of people through the house yet Dad was very much lifted by it all. At this stage my illness felt minimal and I pushed through until more blackouts occurred. My vision would go for 20 min at a time and I would find a quiet room to lie down until it passed and then carry on. I had always suffered with migraine attacks as a child and these blackouts had similar symptoms so I didn't concern myself with them.
During this time I spent each night at home in my own house in Timahoe with my amazing siblings pulling together to do overnight care for dad whilst letting me home for my rest. I was so grateful for this and went to Ratheniska each morning with at least a good nights sleep. Sleep was vital to me and at least now I could manage crutches throughout the day. On the night of the 23rd of September and into the morning of the 24th September some deep intuition told me to stay in Ratheniska that night.
I stayed in my old bedroom at the front of the house with Steve that night and we were both awoken with an almighty bang at the window and what felt like the whole house had been lifted and dropped back down in the same spot. (this is no exaggeration) There is people reading this that will think me mad but I truly believe and yet unknown at the time it was a sign that Dad was being taken that night. Some time later my sister Liz came into my room in a dreadful panic and screamed she needed help with Dad. He had woken and with great urgency needed to urinate and had slipped from the bed to the floor. He lay there in a semi conscious state. There was utter panic yet something kept me calm to take control of the situation. My uncle Seamie (dads brother) had now come into the room and himself and Steve managed to get Dad flat on the floor and I gave Liz instruction to call the ambulance and Steve instruction to contact all the family to come immediately. I then started CPR and although I had never done it I remembered Dad demonstrating it to me one time when I was young. Intuition or an unknown guidance helped me that night. The ambulance support on the phone then helped as my sister Liz kept me informed of how far away the ambulance was and my beautiful nephew Denis lay over the bed counting compression's for me. Dads body was so fragile, I can still hear his ribs snapping as I tried my best to keep him alive a little longer. The fire brigade were the first to come followed by the ambulance crew and they took over from me. In my heart I knew he was gone yet I kept going with hope of everyone getting to say goodbye. The ambulance crew asked if we wanted them to use the defibrillator to start Dads heart yet they also said his brain may have been deprived of oxygen. I remember quietly answering "let him go". To this day I feel guilt that I couldn't help to keep dad with us until he was surrounded by us all.Dad was laid to rest on the 26th September with a joyous occasion that Dad had planned himself which included singing, music and dancing both in the church and graveyard . The priest Fr Paddy described it as "the best funeral he was ever at"
(Photo with my respected coach Bryan McCrystal whilst I was supporting my sister Julieka doing the Dublin marathon 2016. I may look happy, inside I was dying)
The weeks after my dads passing were very much a haze as life felt paused with the reality of a loss and my own reality of feeling I had no control over my own life. I was still unable to return to work and a routine just didn't seem possible when I couldn't tell from day to day how my body or state of mind would be. A lot of my days were spent with my mother as she was clearly also lost in the world and times not with her I felt the guilt of not being there.
My steroids were keeping my symptoms under control yet I still had the odd blackout and I was very much reliant on the medication. On a few occasions I tried not taking the steroids and would end up in bed not able to move with the same attacks of fevers along with joint and muscle pain. I kept googling and researching and the common thread and conclusion I kept noting myself was 'Gut health'.(more about this to come) My consultant started to wean me off of my steroids through weekly lowered doses. They were not a long term solution but a means of calming the fire of my body attacking itself. My body didn't react very well with each drop and my fevers and symptoms returned. My mental state I can be very honest now was very bleak and yes times I wished my life was over. (I don't say this lightly)
In November 2016 I went back to meet my consultant with still no improvement. I managed a face in front of people and forced myself to do things but my body was not responding and still under attack. My bloods couldn't show true reads due to the steroids yet it was clear I wasn't getting control. It was suggested I now try a chemo drug weekly with hope of regulating/calming my immune system. Of all my doctors visits that was the scary. I started the drug that week whilst also taking steroids, morphine pain relief, anti inflammatories, Versatis pain patches and anti inflammatory gels. After trials it was decided to change to tablet form which I could take at home once a week and I would take these every Thursday. These 10 little tablets in my hand terrified me the first time as I was now alone without the support of the hospital and I sat curled up on my kitchen floor crying for 2 hours straight at the thoughts of what I considered was going to " poison my body". This medication made me very ill with nausea, vomiting and diarrhoea that I dreaded Thursdays. Fridays were spent sleeping off the drugs from the day before thus now giving me just 6 days in my week. It never felt right.
This writing I hadn't intended being so long yet each section included I feel gives a very real piece to my jigsaw. I hope my writing so far portrays without sympathy the reality of what faced me and connects with someone that they are not alone in feeling alone.
(Photo of me taken the end Oct 2016 severely bloated by steroids and to think i done an Ironman
3 months previous!!!!!)
As mentioned previously with researching my condition I started to find a common thread between a lot of chronic illnesses."Gut Health" or in simpler terms " balanced nutrition for a healthy gut" I spoke with my coach Bryan McCrystal up and down and picked his brain for more knowledge. I knew as an athlete he had also researched and had given time to "what we eat". I had decided to try and take control of my own current situation, my drug
dependent state and that day I promised myself I would get myself drug
free!!!! I asked Bryan if he could recommend or put me in contact with anyone he had worked with in the nutrition field ......Drum roll please .......I met GOD, AKA Barry Murray!!! Barry has his own business "optimum nutrition 4 sport" and is primarily a sports nutritionist. At first I was intimidated making the call as nutrition for sport wasn't exactly what I needed, nutrition for recovery was clearly my objective. (photo right of myself and Barry Aug 2018 before Hardman )Early December 2016 and still out of work, still resting yet with a focus on my eating plan I could now manage small tasks of cooking. Steve really supported me and the plan and ate as I ate which made things so much simpler with no temptation. My days became monotonous and repetitive of sleep, eat and repeat. I wondered how I would ever have the energy never-mind the ability to get back to work. Socially I was isolated and although Steve encouraged me to get out and go to the likes of the cinema or call to visit people I would do my best to avoid anything as I would be wiped out afterwards. It just seemed pointless. I now also found it very difficult to eat out and was adamant of sticking 100 percent without fail to my food plan. The second week in December I returned to work doing minimal hours and more for my sanity than anything. The support I received was truly amazing and my role became without question "whatever I could manage day to day".
Steve was turning 40 on the 19th of December and I had no clue how to celebrate or even have the energy to organise a celebration. Steve's family arranged a surprise party for him in Charleville on Saturday 17th December. I travelled down that afternoon with my sister Julieka, my mother and my niece Lily. Before leaving I asked my nephew Denis to look after my 2 dogs whilst I was away and call to my house to feed them. Denis waved us off and my mothers usual saying was passed between them before we left "take a good look at me now, you never know when you will see me again" We had a lovely night and the most alive I felt in a long long time. It wasn't to last ............
December 18th 2016 "The day my world stopped spinning"
We enjoyed breakfast in the hotel with my family that morning before they left to go home . I stayed in Charleville with Steve as we didn't plan on travelling home until that evening. I text Denis to know if the pups were okay yet he never replied or read my message. I went upstairs to lie down for a sleep. I was exhausted and slept soundly for a couple of hours.
I lay in bed and it was as if my subconscious was telling me something wasn't right as I heard Steve on the phone whilst I slept. His voice sounded distraught, Steve came up the stairs and gently tried to wake me with a quiver in his voice and pulling my arm to get up. I asked "whats wrong?" and his reply was "its Denis". In my heart I knew straight away yet I pressed Steve to tell me. Steve said "we need to go home as Denis is gone to hospital in an ambulance". At this stage I also noticed 5 missed calls from my sister Joleene. Something was seriously wrong. I pressed Steve again and he held me to tell me "Denis tried to end his life" I now started screaming to tell me everything and asked " Is he alive?" the silence of that moment brought the biggest rush of emotion my body had every experienced. "I think he is gone". I collapsed on the ground and the world around me was blank. We drove 2 hours straight to Portlaoise hospital and all the way I refused to believe the reality of what was happening. I just remember thinking if we go to A&E Denis will be there and will be fine, surely the doctors are helping him. We waited in the nurses station to hear where Denis had been taken. After some time we stepped out of life and into a real live nightmare and were brought to see Denis in the morgue. He lay there perfect and I waited for the moment to be told it wasn't real. I hugged him and yet he didn't react to my touch......He was truly gone from us.
Denis was laid to rest next to my dad and the few days were completely surreal as we had just dealt with a funeral 3 months previous. The support my whole family received at that time from friends and the community was incredible.
Denis was undoubtedly the most important and special person in my world. He came into my life when I was 16 and became the glue that brought and held our family together. He is my eldest sister Julieka's child yet he became a son, a brother, a nephew and everything to us all. He was a true fun loving, infectious character.
Denis always quietly got on with life and portrayed the outer happiness that he felt people wanted to see from him. He found it very difficult to express himself which often led to a build up of emotion that he did not know how to handle or address. He had in months prior to his death been attending counselling which I organised for him and 100% supported. I drove him for his first session and waited for him in the car. He had his own car and could drive himself yet I wanted him to know how much I supported and was so proud of him for agreeing to seek help. The journeys home were mostly silent yet I would reinforce I was there to listen if he needed me. He made an agreement with his counselor for me to call him each day at 1pm and see was he okay. They were always brief calls yet he was building belief in my support. In a way that I cannot explain I understood what he was feeling and understand completely the feeling of being lonely in a crowd. Over the weeks he would insist on driving himself to his sessions and I finally agreed yet the first 2 occasions he drove I drove after him and was there when he would come out of the sessions. Eventually I let him go himself yet I always insisted on paying for his sessions as a sign of my support and it also gave me a chance to ask him how he was feeling etc. Amazingly our lunchtime phone calls turned around and he would return a call to me in the afternoons. To see Denis phoning me always made my heart sing. In July I got ill and my biggest regret was that I took my eye off Denis. I presumed Denis was still attending his counselling sessions and I would text him from the hospital with what I now feel was bleak support. He came to the hospital one evening and text from the car park that he would come in once everyone else was gone. That night he sobbed beside me and I can still hear his words “don’t get sick on me too”
As mentioned earlier the bond Denis had
with his Granddad, my Dad was incredibly rare.. Denis’s reference to me
“not to get sick too”was definitely instigated by the pain he was feeling over
my Dads terminal illness. He was so kind and caring towards Dad, by simply just
being there with him. He would sit with him most evenings simply watching TV and
many times they would often both be found asleep in front of the telly. They
travelled the country together for their love of GAA both with Timahoe ladies
GAA in early years where myself and my 2 sisters had many successes with Denis
as our mascot and Dad as club chairperson/selector. Denis as he grew up caught
the bug himself and his passion for GAA grew along with his ability and
success. Dad wouldn't miss his training sessions never mind all the matches.
They were undoubtedly best friends and soul mates on this earth.
I promised Denis I would get well and not
to worry about me. I found out a few
weeks later Denis hadn’t been going to his counselling sessions since I had
gotten sick and honestly because I was feeling so unwell and not thinking
straight I didn’t follow up on this with him. I truly feel so guilty to this
day and no words will ever comfort my regret.
The night after my Dads passing Denis
called me out to the front gate of my parents house to share one of the most
special moments and memories I have with Denis. It was a really crisp and clear
night and Denis pointed out a star in the sky which he dedicated to his granddad
and he believed this star was my Dad looking down on us . I explained to him
about star constellations that night and the star he had chosen was a star
which was part of “the big dipper”(the plough). The amazing thing is that star
sign contains 7 stars and their was 7 in my family + Denis. The star he chose
has a tiny star faintly beside it which
almost looks attached to Dads star. I have dedicated that star to Denis and recently had this star constellation tattooed on my finger and is now also my new music logo. There
was so much love felt that night and I hugged Denis as we shared that moment. I sensed Denis’s emotions were caught inside him yet
he connected with me.
Am I angry with Denis? NEVER, and that reply comes from an understanding of how he felt that day.
Christmas was cancelled that year with such an empty feeling that could not be filled. Christmas was always built around Denis for all my family and the tradition of me staying with him Christmas eve was taken. That for me, was one of the toughest realisations and Christmas eve 2016 a feeling of suffocation of having no control over 2 losses for Christmas that year. The only way for me to cope was to "press pause" on my life button. People that have experienced losses will understand that statement and although life has carried on I truly don't know to this day if I have pressed play yet to continue. Grief is different for everyone yet I have learned to respect how any person tries or learns to cope. Remember "nobody sets out or requests to lose loved ones". Grief unfortunately comes with a most painful invisible pain that cannot be understood unless experienced . Of all the ailments and pain I experienced with my Stills disease I would choose it any day over grief or loss!!!!
Throughout this time I somehow managed to stick with my nutrition plan. In reality as often before I just wanted to eat my emotions, yet I kept myself on track. For what? I can honestly say "I don't know" because I felt so overwhelmed and defeated that gorging on food, alcohol or anything that could ease the pain seemed justifiable. Looking back now I feel that sticking to my strict food plan was the only thing in my life I could have full control over. Was I honestly sticking to it at that time to help me get better ...NO!!! I was living....only surviving day by day and my future didn't exist at that time.
I continued working yet I didn't want to be meeting people. I was supported hugely in work but particularly by my true friend Annmarie. Her support was and still is incredible. By listening but mostly "by hearing me".
January 2017 my health was still out of control yet after shock and stress of the past months how could it improve? I was still on my weekly medications and at this point severely bloated from steroids. I was supposed to be reducing my steroid tablets weekly yet each week I did I was getting visual blackouts where my vision would go completely or I would experience a migraine aura. Both of which were very very scary. The first time the complete vision went was in September and I was driving through Ballacolla on my way for Cranio-sacral therapy. I managed to pull in off the road, laid back my seat and somehow managed to deep breathe to relax myself. After 20 min my vision returned and I closed my eyes and slept for 20 min before turning to drive home. That morning I knowingly hadn't taken my steroids and I think I was testing to see how my body was without them.... clearly not good and still very much dependent. I had now managed to drop from a very high dosage of steroids to what I felt a minimal dosage yet my body reacted severely if I delayed in taking them. Within 1 hour of a delayed dose I would be crippled with pain in every joint and fevers would attack along with wheezy breathing similar to that of an asthma attack.
Throughout this time and backed up by continually researching I waited patiently for my 100% nutrition plan to kick in. Yes I had set backs and hurdles in my way yet not once did I put anything wrong food wise into my mouth. I was only on this plan since November and I needed to be patient. I booked back in with my nutritionist to concrete that I was doing things right and as much as he and everyone supported me "only I could control how I ate". I felt a little lost because I was still feeling so awful and tiredness overwhelmed me.
April 2017 I met again with my Rheumatologist and like previous appointments had fluid drained from my knees with a dreaded syringe followed by steroid injections to both knees, soles of both feet, my chest, my back, my elbows, my wrists and my neck.(he explained he couldn't do every joint that day!!) We discussed still being unable to wean off my steroids and he TOLD ME he would be putting me on a new drug only available for home use in recent months. Previously it could only be given by IV and my doctor hoped it would be successful for me to use at home and help me to come off the last of the steroids. I was so deflated that day with now needing another weekly medication and although my doctor is in my opinion the best Rheumatologist there is, I still felt as though I was just a number and this doctor didn't hear that I was mentally and emotionally F@@ked up. This new injection pen came with some risks and possible symptoms which terrified me yet "I had no other option ", this was it and I had to !!! That meeting ended with my consultant saying "I will see you in November!!!! I requested to be seen sooner yet unfortunately despite having one of the best health insurance cover my doctor works in a public hospital and does not differentiate between public and private patients. Therefore has no private clinics. In a way I admire him for this yet if his patients need to see him they have to go through A&E!!!! does that seem right??
2 days later the nurse called to my house to teach me how to administer my new drug whilst running through side effects etc. Everything intuitively was telling me not to take more poison yet constantly rolling over in my head was "I have no other option". The nurse called again the following week and because I had no major side effects I was now left to administer it to myself. This drug initially had no noticeable side effects yet as the weeks went on and I came off the steroids tiredness overcame me to the point where I could not concentrate and yet could not sleep. I was feeling continually that my superb eating plan was a complete contradiction to everything I was pumping into my body. I was learning through reading that a new approach to Stills disease and also Rheumatoid arthritis was to get moving as much as possible rather than what previously would have been suggested to rest. I had kept up my swimming and although I wasn't able for much it gave me a sense of doing something and also somewhere to go without being judged or questioned. I now decided to try some walking and yes some jogging. I did I suppose push it too hard at times yet it was my way of feeling normal with a sense of being trapped in this new body. I battled with the acceptance of the condition and still to this day have never accepted ownership of it. By that I mean, if for example I'm asked whats wrong with me I will reply with "I was diagnosed with stills disease" and not " I have stills disease".
The next few months continued monotonous and everything seemed dull and boring. I would often sit and cry for the want of my old life back. At the time I was getting about in my routine of work, drugs and my healthy eating. My symptoms definitely improved and I could do more yet my week still only had 6 days because Friday each week was a wipe-out with medications taken on Thursday evening.
One evening in August 2017 I went to the local pub with my partner Steve and was introduced to a lady whom had in recent time moved into the area. She was only living 1Km up the road from me. Her name is Elaine Hogan. From saying hello everything in me was telling me I was supposed to meet this woman. Elaine is a practitioner of Naturopathic medicine (herbalist) . That night I agreed to contact her and make an appointment for a consultation. My brain was on over drive that night and I wondered was Elaine going to be the answer I was waiting for in terms of getting off drugs? I made an appointment with Elaine for that week and the appointment couldn't come quick enough. Something again intuitively was telling me "this is for you". In my initial appointment I spent 3 hours with Elaine and as suggested I brought along a food diary of the week previous along with my list of medications. Elaine had a nutrition plan ready for me and when she realised I had been doing the exact plan she was going to recommend I remember her sitting back in her chair and laughing. I was a bit taken aback at what she was laughing at until she commented "you have half my job done already". Finally a reason to smile that I was doing something right. Elaine advised that with my nutrition being so good I was well ahead in terms of treatment she could start me on. Elaine studied the medications prescribed by my Rheumatologist and was careful not to give me anything that would effect or cause harm using alongside the same. Elaine discussed and like my nutritionist reinforced yet again that my condition was possibly caused by my gut health (leaky gut). In turn other body systems were now affected and toxic. Elaine also done other testing on me which showed my body holding heat and a lot of inflammation due to an over active immune system. Elaine prescribed and made me up a tinture bottle which I would take daily along with specifically made herbal teas and powders. We talked a lot that day and Elaine kindly suggested meeting with her colleague Monique. Monique is a Psychotherapist yet she offers a therapy called "Neuro Therapy" which Elaine felt I needed along with counselling. I was introduced to Monique and she talked me through what Neuro therapy could offer me and yet again my guides told me "this is for you"
It took my body a few weeks to get used to the herbs yet I was confident they were doing something. I also took various other herbs and supplements and Elaine was in constant contact with adjustments with any side effects I experienced. My body was very sensitive to the herbs and minimal changes made a huge difference. Its crazy that I was actually happy with some ailments to prove to me that these herbs were as effective as traditional drugs. The teas were amazing . I'm not going to go into much more detail about Elaine's plan or prescriptions yet I will advise anyone reading this to consider going alternative and more importantly "Trust it".
The following week I had an appointment with Monique for Neuro therapy and the initial session consisted of a brain map. To explain briefly what Neuro therapy is, it is a machine which works off frequency using EEG. A cap is placed on the head and wires attached at certain points and this records and maps any abnormalities in brain frequencies which in turn would cause the likes of inflammation in the brain.(I still laugh at this as it always reminds me of Frankenstein wired up) Monique went through the map results and I decided I wanted to continue with a course of treatments. I had weekly appointments where I would sit with the cap on my head whilst the machine done its work and during which I would have a counselling session. I built a trust with Monique and soon realised Elaine was right. I needed Monique for counselling to compliment the effectiveness of the herbs. "Nothing changes if Nothing Changes"!!!
I had in years previous attended counselling to help deal with sexual abuse I suffered. At the time I thought that counselling had helped me . I now realised that I wasn't ready back then to face anything yet the support back then was simply all I needed. Monique I describe as the most intelligent woman I have ever met. Every week I genuinely felt so lucky to have this woman help me figure things out and for once in my life I felt supported by these 2 women.
I continued with my weekly sessions whilst using the herbs and I started to feel stronger and more determined to find myself. Work was now in peak season and I was now back working full time hours. I was still dreading Thursday nights when I would take my 2 regular medications yet my side effects seemed bearable on the Thursdays yet Fridays were still a wipe-out. I found work so difficult in terms of being organised and trying so hard not to forget things. I was swimming, jogging and walking throughout those months and I felt the movement would help move and flush the toxic drugs through my body faster. I would have constant chats with Chris in work over not being able to train properly and a vision of never again being able to. I would often well up and on occasions cry about the loss of my former self. August 12th 2017 Chris entered us in a sprint distance triathlon in Fermoy (750mtr swim, 20km cycle, 5km run) He entered us as a relay team and he believed because I had kept up some swimming that I would be able to do the 750mtr swim. He in turn would do the bike and run sections. We drove down that morning and also my partner Steve came from Cork to support us. I was so so nervous yet so excited and exhilarated by simply walking into the room to register. We checked out the course and my biggest concern wasn't the actual swim it was the length of the run from the water exit to the bike transition area!!! It actually terrified me that my body would collapse or it would stimulate an attack. The race start is one of the proudest moments I have ever felt and as my body took my first few strokes I could feel a rush of emotion "that I was actually doing this and I was back doing what I loved". I swam at a comfortable pace to make sure I would safely make it and exited the water and my earlier feelings of not being able to run the distance to tag Chris had vanished. I sprinted as hard as I could and collapsed out of breath once I reached my hand over. Steves support along with Chris's that day was filled with such compassion to seeing me smile and that I got through it safely. We managed to come 2nd place in the relay event (Chris in fairness smashed it on the bike and run......If only he could swim tho!!LOL)
My concentration was badly affected and I had to start making lists on lists of simple daily tasks. Electric picnic festival was the first weekend of September and I the manager of the restaurant Stradbally FAyre in the town. I genuinely struggled so much doing things which I would normally take in my stride. This I found so frustrating as my mind was full and busy at a peak work season. I was always so systematical in work and I always got satisfaction out of ticking boxes getting things done yet at that time I would have to double and treble check over everything or ask opinions from others. I look back and I can now see it was my great nutrition and the herb support really was starting to make changes to my overall wellness.
November 2017 I had a holiday to Puerto Rice Gran Canaria booked with my sister Julieka, my niece Lily, Juliekas friend and her family. I was thoroughly looking forward to the holiday as a break and rest from everything. I was a bit concerned about travelling and bringing my medications through the airport so I got a letter from my consultant. I packed my medication in a refrigerated pouch as the drugs needed to be kept refrigerated. The first thing I checked on arriving at our hotel was that the apartment had a fridge for my medication . I put my medication into the fridge straight away for peace of mind. The day after I noticed a bottle of water I had also put in the fridge was frozen solid!! The temperature of the fridge was set incorrectly and everything in it had frozen solid including my injections. Panic set in and I contacted my pharmacy at home, I also started to google and looked up the information leaflets. I was advised not to use the medication and my pharmacy at home told me they could fax a copy of my prescription to a pharmacy in Spain which I could collect yet the medication could be expensive. Gut instinct again was telling me my medication had frozen for a reason. I went to a nearby pharmacy and gave them the name of my medication and asked them the cost of my injections if I was to get a prescription faxed. I will never forget the shock I got when the pharmacist came back and said one of my injections would cost me €5350 each!!!!!!! As I mentioned earlier this drug had only recently become available for home use as previous was only available through IV in hospitals. This price obviously wasn't an option and I didn't panic as I had packed some of my previously used steroids for use should something happen. Thursday came and I didn't take any of my drugs. I waited in anticipation for my body to react yet it didn't. I returned home and discussed with my counselor Monique and Elaine . My body had a build up of the drugs in my system and thus why my body didn't have an immediate reaction. I thought to myself yet again "this was meant to be" and I decided to not take the drugs again the following week. Elaine was on the other end of the phone for support and with herbs for any ailments or reactions I had initially.(I will confirm this was 100% my own decision). November 2017 was the last time I took my injections or any other traditional medications!!!!!! (1 year ago) I absolutely do not knock traditional medication as it did help me massively on many occasions and is of course important in so many circumstances. I am not saying I wont ever use traditional medication again yet for now my herbs are working for me.
December 2017 I kept up my small training which included walks, short runs and my swimming. I had no set plan yet I managed what I could. I continued with my herbs and weekly neurotherapy/counselling and finally things were starting to improve. I still however got tired quite easily and in turn had to learn to listen to my body and resting when I needed to. It was and still is very difficult not to push myself as I had been able to previous to sickness. I was getting stronger and my body was feeling the benefits of my healthy eating along with the natural herbs. Mentally
I felt stronger knowing I was only consuming only natural.
It was incredible how quickly my body responded after my decision of stopping the regular medication. My concentration improved massively and daily decisions became much clearer. However I still felt lost with a sense of loss of my former self and now whilst I was feeling better a much clearer realisation of family grief took hold. I feel up to then my own sickness was somewhat a distraction from the grieving process. Sometime during December 2017 I met up with my cousin Jody. Jody is a very very talented musician and often we would have gotten together at music sessions along with my Dad. Jody very much respected my Dad as a singer/musician and would have always looked up to him down through the years. He no doubt learned lots from him.
Throughout my Dads illness my Dad attended and used a local cancer support centre in Portlaoise town called "The Cuisle Centre". Dad would attend a group on a Thursday and when he got comfortable with the group he started bringing his accordian along and would play and sing for the patients and volunteers. Dads last time to play in the centre was just 2 days before his death and on that day my cousin Jody also played with him along with myself and my siblings singing.
Myself and Jody decided to record some songs together to produce a CD in my Dads memory and in doing so give something back to The Cuisle Centre. We decided the proceeds from the CDs would go to the centre. We started meeting weekly back in Dec 2017. The first song we rehearsed and took straight to recording is dedicated to my Dad and is called "The Old Man". This song I feel will resonate with anyone that has lost a special Dad. Second of the songs we decided on recording was a well known ballad called "Botany Bay".This song was a song which myself and my siblings would have always sang in public with Dad playing the music. However the first day I met up with Jody I brought along a song I had written myself . The song I initially had written years previous when I first told people I was sexually abused. I had written the first 2 verses and I remember having a mental block and I could not find the words to build a chorus or a finish for the song. In December 2016 one week after Denis's death I came across the lyrics written in an old refill pad. I sat down and read them to myself and yet again a gut feeling of "this was meant to be ". I picked up a pen and within 5 minutes had a chorus and a final verse. It was as if the song needed both Denis and my experiences inter-twinned to give an important message. I called the song "Share". During the time I finished the song Denis was also being remembered by his friends, parents and family with wristbands which included the slogan "share because you care". The proceeds of these wristbands go to "Pieta house" a support centre for families affected by suicide. The song although was initially about my own life experiences/feelings I now feel has become a song with a very important message. I feel Denis lives on through the message this song portraits. I feel a connection to him every time I sing or listen to it and I dedicate it to him x.
Jody put a basic rhythm to the song and we decided after a few weeks it would be the second song we would take to the recording studio as an original. We met again with Dara the producer and again I was in awe of his work and his ability helping us bring our music to life. This song I am releasing on Itunes on Dec 3rd yet it is available for pre order from now until then. If I could manage to get enough sales in pre order and on the actual day of release (3rd of Dec 2018) we have a chance of getting in the charts. My ultimate dream would be to get Denis a No1........💙💙💙💙💙💙
January 2017 I attended "Momentum 18" in Dublin. This was a day long workshop run by 3 motivational speakers, Gerry Duffy, Pat Divilly and George Anderson. An incredible workshop that I would advise people to attend. Its suitable for everyone. I was somewhat intimidated at first in going as I had thought it would be primarily directed at highly motivated people and here I was in depths of depression and battling to simply get out of bed in the mornings. I felt I had nothing driving me to stay motivated as my drug, my training had been taken from me. During the day I struggled to keep my concentration and keep focused. Gerry Duffy came on stage to speak. I had met and spoken with Gerry briefly on a few previous occasions and I was in awe and have such admiration for this man. Gerry is a top motivational speaker, coach, author yet my admiration for him comes from his completion and winning of a Deca triathlon (10 Ironman events, 10 consecutive days) whilst my greatest respect is that with his success he had the ability to remain grounded and a true gentleman. That day he opened his speech by getting people to close their eyes and visualise as he spoke. His gentle voice rang through me and he had my attention. "YOU ARE ALIVE" Gerry kept repeating these words and the more he repeated it the more I felt that he was talking to me. I opened my eyes and looked around and a completely packed silent room I felt I was the only person there. Everyone else seemed calm and relaxed with their eyes closed and boom without warning my tears started to flow. I repeated to myself "I am alive". The rest of that day was amazing yet this is the moment that stands out. I was alive yet as mentioned previously in this blog I had pressed pause on life. I was merely surviving and Gerry's words knocked me out of a daily trance I had myself in. That day I decided to myself that I would get myself back together with a chance of possibly sharing my story at "Momentum 2019". Gerry if your reading this give me a call.
February 2017' I was feeling somewhat motivated mentally. My music gave me an outlet to express myself along with my counselling sessions. I booked an appointment with my GP to discuss my still occurring visual blackouts and to get my regular bloods checked as I would every 6 weeks. I had previously discussed this with her yet I had suffered chronic migraine attacks since the age of 8. I dismissed that it was all connected and I continually felt I cannot go to the doctor again with something else wrong with me (what would people think syndrome). My GP sent a referral letter to a neurologist in Dublin to investigate further. During that same appointment with my GP she questioned if I had kept up to date with my cervical smear tests. I again thought in my head I cannot tell her there is something else wrong with me yet I blurted it out and told her embarrassingly of irregular vaginal bleeding I had been experiencing for some time. She examined me and calmly explained to me that I had 2 polyps on my cervix. She referred me immediately to Autheven hospital in Kilkenny to meet a Gynecology consultant that week. I remember that journey to Kilkenny and in my head thinking "here I go again, just as I'm starting to recover I get knocked down again". I met with my consultant and what a gentleman. He thoroughly went through everything with me including my history and my medications. His examination and scan confirmed 2 very large polyps on my cervix which unknown to me were causing my irregular bleeding along with back pain. I could not get it out of my head "what if its cancer?" I finally asked the question. He confirmed that the polyps needed to be surgically removed and sent for testing to rule out pre-cancerous cells. I think my mind was so used to dealing with shocks I simply switched immediately into my survival mode and shelved the worry and said to myself "what will be will be". I had my surgery the following week and had to take 2 weeks off work. I spent the first 4 days in bed yet thankfully I recovered quite quickly. Elaine prescribed me herbs which she tailored to detox my system from the anesthetic . These 2 weeks knocked me big-time and a sense of feeling alone gave me again too much time for me to think and grieve over my former self . I missed being well and a sense of no control over my life made my mood very low. I desperately wanted to do things that I couldn't do anymore and felt constantly that I was being left behind. One month after my surgery I met again with my consultant in Kilkenny and great news my results had come back clear. I promised myself I would be strong and bounce back fighting as quickly as I could!!
Back in November 2017 my friend Chris sat me down in work one morning and we like many other conversations chatted about training and what challenges we could enter in 2018. I secretly had Ironman in my head yet tortured myself continually as to how I could ever compete again. Chris spoke of his idea of entering a double Iironman event in the UK in May 2018. I was in awe and knew this was one of his dreams . He then asked me to coach him for the event yet along with a weekly training plan he asked me to also include a weekly nutrition plan to coincide with the same. I was actually stuck for words that Chris would trust me to take on this role. What if I screwed this up on him? I was confident in taking on the job yet feared my own body breaking down again and that I couldn't give Chris's plan my all. He continually told me how he admired how far I had come since my diagnosis yet in particular my discipline towards my nutrition. The fact that he wanted and was willing to go on a similar plan really boosted my confidence again that I was doing something right.
At this stage I was now believing and seeing results that my fat adaptation nutrition was healing me. Chris started my plan in Nov 2017 and with huge training hours along with a busy lifestyle he never as much as got a cold (that speaks for itself).
I trained with Chris when I could yet this was mostly swimming or walking in the woods. I supported Chris 100 % yet its human I wanted to be training myself. Tiredness after most sessions would flatten and deflate me. We spoke on a few occasions of maybe entering "Hardman Full Iron Distance" in August 2018 and deep down I was telling myself 'I can do that'. I would often say it to Chris in a joking manner to see his reaction. He would suggest entering short distance races and see how my body responds and then possibly up my training. March 2018 while scrolling through Facebook one night I came across a post on the "Hardman page" It was a competition to win a free entry to Hardman full distance triathlon race in August that myself and Chris had spoken about entering. The competition was a like and share competition along with posting of a name below the post. I didn't even think about it and liked and shared followed by adding a reply "I dare ya to pick me"
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| Winner announced |
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| My entry to competition |
I could hardly believe it yet my intuition told me "you can do this". I had wanted to enter all along yet due to illness feared what people would think or say (what people think syndrome), I felt if I entered the race myself people would deem me insane considering what my body had been through the year and a half prior. Now that I had won the entry I could tell people I had won it and wait for their responses in terms of me actually going ahead with it. I was doing it and although I told people I would decide closer to the time yet I subconsciously made my decision that I was doing it regardless.
I started swimming and running more regularly yet I was wiser to not push too hard and also allowing more recovery days than I would have years previous. I would often take a full week off if I felt slight chance of a flare. My flares thankfully, I have learned can most times be settled with sleep or rest. I am omitting a lot of details and hiccups/bad days I had during these months yet in comparison to the previous years 'things were good'.
I travelled to the UK in May with Chris as part of his support crew and this experience reinforced to me why I loved this sport. I was surrounded by like minded athletes and their common ideals that nothing would stop them achieving their goals. This made me even more determined to achieving my goal in August.
In June 2018 I entered Tri Athy Olympic distance triathlon and this would be my first full triathlon race since June 2016. I fought many demons to the build up yet I still turned up. I completed the race and was thrilled yet I found the run section of 10km difficult in terms of my heart rate spiking. I inwardly compared what I had just raced to what I would face in August yet I knew I had it mentally so all I needed was my body to follow suit. I took a week off after Tri Athy and again rested. From doing plans and from learning over the years I knew my long distance weekly runs and bike sessions were vital from here on in.....they didn't always happen yet I kept tipping away getting in sessions that I could manage day to day. My food plan was on par which gave me a confidence that I was fueled for sessions and in turn fueled to recover also.
From the time I won the competition entry I would often receive messages of support from the Hardman event organiser Alan. He knew some of my story and I am so so grateful for his generosity. Alan contacted me in June and gave me complimentary entry to a sprint triathlon race his company was organising at Valentia Island. I went to the race and realised "this man doesn't organise easy races". I even got a free T-Shirt that day LOL thanks Alan. I was getting stronger yet I was still slow in terms of completion yet completion was my goal and my ultimate goal in August. Work was busy and very stressful. I kept focused on my training yet this time round I definitely had more rest days than I had training days. I was now less than 2 months away from race day and anxious that my training wasn't enough. Alan contacted me again and offered me yet again a free entry to his Half Ironman distance race in Waterville in Kerry which would take place on July 14th. I decided to enter and arranged it around a family week away with Steve, my mother, 2 sisters and 2 nieces. On the Friday we drove to Waterville to register and met with Alan, he suggested we drive the bike route to see what lay ahead the following day. Steve drove me around the bike course along with his Dad who drove from Cork to support. That drive I will never forget for the rest of my life....... I was terrified and the course was the toughest bike route I had ever driven never mind cycled. The views were incredible and I describe them as 3D images set in the Kerry mountains!!!!!!! Everything seemed surreal and I had to keep blinking to confirm I wasn't dreaming. That night I got back to the rented house and bawled my eyes out and was so so nervous over what faced me. The winds had risen and the swim course was very choppy yet the swim which would normally have me nervous wasn't the root of my nerves, the bike course was. I got through the race without pushing limits and the sense of achievement from that race I will forever be able to replay in my mind. I made my decision "If I could get through that race I can definitely get through the full distance in August"
I continued with my training plan of "training when I felt good" and my confidence was boosted. Tiredness was my main complaint, tiredness beyond regular tiredness and I feel this is something I will have to manage forever.
Two weeks recovery with no training.... and now its August!! Race day in 3 weeks!! I still had my nutrition on track with weekly plans from Barry yet I booked in with him to help me with my nutrition for the big day. I had some doubt in my nutrition yet after meeting Barry I realised it was just nerves. My training had remained steady yet no big sessions. I managed one long cycle session two weeks before which was just 130km. I was still confident of managing the race yet I was very realistic that time would not be my priority....completion was still my main goal. Was I nervous ?? Yes and No. Yes, that my body would not withstand the full course. No, because I had set myself no time target or time expectation.
I travelled down to Killarney the day before the race and all I genuinely kept saying to myself was "you got through Waterville, this will be easier". I traveled with Steve and Chris. Chris had also entered in the race. It was a great distraction to have them both with me and to have the craic with. Nerves were nothing like the previous race and I had a very relaxed approach. We registered that evening and again the race organiser Alan with his laid back approach makes these races what they are. A friendly relaxed atmosphere with no drama or expectation. We headed back to get our transition bags ready for the early start the next morning.
I literally had my bags ready in 10 mins and I laughed as I quietly watched Chris spending an age at his. I was so relaxed thinking "what will be, will be and I am just going to enjoy the experience regardless of the outcome". A fellow Trilogy club member Aoife had also entered the race and we enjoyed dinner and a cuppa in her house along with plenty nervous laughs. I did however prepare my own dinner earlier that day which consisted of salmon and veg only....yes you read that right, No carb loading. No potatoes, No rice, No pasta, No bread.
It was an early 5am rise with a 6am race start. I had everything ready and Steve had everything taken care of in terms of servicing my bike, loading the car, carrying my bags but most of all being there!!
I had no breakfast and I know this will be a shock to most yet I was happy and confident and in control as I had now trained my body to fat adapt. We headed to the swim transition area and nerves set in yet I kept smiling with sheer appreciation of making it to the start line. Steve's Mam was also now with us and unknowns to her, her support truly settled me.
We took some pictures and I gave my last nervous hugs to my fellow team members and more importantly my supporters Steve and Lucy. I was now entering the water and in my own head space thinking "this is it". I had flashbacks and visions of my previous 2 year journey. I had made it and come so far, I could feel my eyes welling up and my body filling with emotion. Emotion that I didn't understand. I waved out to Chris and wished him well and the countdown from Ten began. I felt the strange emotion heighten and I took my first few strokes.With the water flowing over my head I felt grounded with only a silence of the simple sound of the water. It then dawned on me the emotion I was feeling was "happiness". I stopped for about one minute and looked around me and took everything in. The views, the sheer beauty that surrounded me but mostly "I am here, and I am able to do this, I am a survivor". My intuition that I have spoken about throughout this writing seemed to speak to me at that very moment. "you will complete this". I realised I had not felt happy in so so long, so long that I didn't realise what happiness was!!!!! It was like someone whispered in my ear and at the same time pressed my auto pilot button. The voice told me to "sit back and enjoy the ride". I believe this intuition to be the support of my two Angels. My Dad and Denis, the most influential and important people that have molded me and been a massive part of my life. I feel they have left this physical world yet they have never left my side. They will forever be my heroes and will remain the strongest and bravest two people I have ever known. I will forever ask them for guidance.
I very happily got through the swim and enjoyed every moment of it. My goggles kept fogging on me and I had to continually stop to clear them. The second lap the sun had just started to peep over the mountain and was blinding and sighting was so difficult yet it really didn't worry me. I was just in awe of the beauty and actually getting to swim through such beauty.
I came out of the water on a massive high and set out on the bike course. I tipped along at a steady pace. The weather was absolutely perfect. As I cycled out of Killarney I looked to my right and actually out loud said "WOW" the views over Killarney lakes were just incredible and I considered myself so lucky to be present in that moment.
At the top of Molls Gap which was one hour into my cycle it was time to eat for the first time that day. My plan was working well and now I would continue by eating a naked bar every hour . 100Kcal approx in each. I cycled along with Aoife for a few minutes and we laughed of hopes of a podium finish for us both. Aoife is an incredible athlete and I knew she had worked hard and she truly deserved to do well. She so politely was keeping with me and after a few min I told her to push on herself as I was blissfully happy enjoying my own day out. I knew my fitness in terms of my cycle strength wasn't on par to previous events yet I knew I was mentally strong. Steve and his Mam were out driving the cycle course and I know Steve was particularly nervous of me facing such a mammoth challenge. He was understandably worried about me. I was so grateful seeing them at lots of points along the bike route and i knew I wouldn't need for anything. I got to Sneem and this part of the course now took in some of the same route as was in the race a few weeks previous. This was good in a sense that I knew what was ahead of me yet I also dreaded some sections ahead. I kept my legs turning and at 70km did have a thought of "if Steve passes in the next few minutes, I'm getting into the car". I am now grateful Steve was gone for breakfast at that time!!!!!LOL. I got through that half hour where I was clearly living in my head and I stopped on the road for two min and composed myself to get back cycling from my heart. I got to Waterville and the food station where Steve and his Mam had parked up and had a cup of tea ready for me. I had asked them to have tea ready for me there. At that food station there was volunteer Marshalls giving out food and drinks. They were great characters and I had great fun chatting with them. I was clearly not winning and I jokingly asked two of the men "am I winning?" to which they laughed and replied "if you think your winning, then your winning". Little did they know I felt I was winning by just starting the race. I went on for another 20km and this part of the course wasn't as picturesque as what I had seen up to that. I needed a lift and low and behold my angels sent me the best lift I could have never imagined. I could see a car pulled in ahead with people standing and cheering my name . I got closer to discover it was my sisters Julieka and Joleene and my nieces Lily and Evie. I felt the emotions build inside me again and I was so elated at seeing them. They drove all that way to support me that morning and so many thoughts rushed through my mind. The significance of them making me feel so emotional at that moment now makes sense. It was a combination of their support that day along with looking back and knowing that they were always there for me throughout my illness. My nieces simply always made me smile . They drove and pulled in at different points for the rest of the bike course and I felt so lucky to have them with me.(someday Lily will master the floss dance lol) Steve remained my constant support, calculating times, distances and overall control over me not having to think. I finished the bike course late in the afternoon and headed for the female changing tent to quickly put on my run gear. I only had a marathon ahead of me!!!!! I was one of the last few coming in off the bike course yet I really didn't care. I had asked on a few occasions how Chris and was getting on and I was thrilled to hear he was pushing limits.
I started out on the run course through the stunning Killarney park and I had four 10km loops ahead of me. I really was so grateful for my supporters at this point and I kept smiling. I got to the 4km mark and I knew "it was going to be a long evening!!!". My kidneys were under a bit of pressure and I needed to mind myself and stick with my plan of completion and not running at my 4km pace like I would usually (ok the 4km pace is a joke lol). I walked 1km hoping that things would settle and unfortunately it didn't. I walked and jogged intermittently for the rest of that first lap. I was still extremely happy and focused on achieving and my kidney pain was only a gear slipping for me. All it meant was that I would have to go slower. For my second lap my sister Julieka joined me to keep me company and her support by just being with me made me smile even more. She herself was in training for the Dublin marathon and was well used to long runs . My run became a brisk walk for that lap and I took a couple of paracetamol to try ease things. I got around that lap and was very close to nature taking much needed toilet breaks ;-). LOL. My nutrition kept consistent and everything was going great. My third lap was also mostly walked and I took an anti inflammatory tablet and within 10min I was back running. My supporters met me at lots of different points along the run course and would encourage me to run. I was very grateful for their encouragement yet I was content. At this stage Chris had finished and I was facing into my final lap. He started out on the lap with me and at this point I was running. One km into the lap I turned around and my stepson Gary was behind me on Chris's bike. He had driven from Cork after he finished work and I was so thrilled to see him. The lap was a complete comedy show between the 3 of us. Chris had thought I would be walking the lap and had decided to come with me as he could surely manage a walk. I kept running and when he saw Gary coming on his bike it wasn't long before they argued over who needed the bike the most. Chris won that battle which left Gary running with me (garys blisters were worse than mine after doing his 10km! Light weight!) It was now getting dark and was clear I was going to be crossing the line in the dark. I will remember the fun of that 10km loop forever as too I'm sure they will. 1Km to go and they left me to head to the finish line . I felt such reward from having such an amazing day as I approached the finish line I could see and hear everyone willing me to cross the line. My niece Lily looked on and cheered with such pride. Nothing beats seeing Joy in a child's face and how she made herself look taller to make sure I saw her. I took her hand for the last 200mtrs to cross the line with me and I could feel her excitement. I crossed the line in 15hrs and 14mins and was greeted by everyone and in particular the amazing organiser Alan. He placed my medal around my neck and I simply hadn't the words to thank Alan for choosing me as his competition winner and helping me on my journey back to living!!!! Both myself and Aoife did podium that day (ssssshhhhh dont tell anyone that but only 2 women had the balls to enter) Aoife was crowned National long distance champion and I runner up. My achievement got better with a sense of acknowledgement for my journey.
This completes my journey of deaths door to hardman. I need to thank so many people yet anyone I have mentioned in my writing are the people I am truly in debt to . Sometimes I would find myself in such a dark place that I would feel so alone. Reality "I was never alone once I reached out". This is a very difficult thing to do for a person living the reality of a dark hole. For the people that dont understand depression , sometimes being there for someone means "actually physically not being there!". This might sound crazy but for me I can say that sometimes to get myself out of a depression I simply need to be on my own. Reassurance from people is suffice support.
I truly hope my writing helps at least one person that may have lost their way. Or perhaps I have helped give an idea of understanding to the person living with the person that is suffering. In a strange way I am grateful for all of my lifes experiences as they have made me who I am today...... A warrior and a survivor.
Thank you for taking the time to hear my story
Martina Denise Cahill x
unreal and amazing life story you truly are the bravest person i know in every aspect of life. I hope you are very proud of yourself and your family.
ReplyDeleteWow Martina, what a woman. I was at the hardman this year supporting and had so such respect for you two ladies. I have no doubt this will help people going through tough times. Incredibly inspiring. Keep the fire burning x
ReplyDeleteexcellent read, very brave and courageous. Well done!
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