My Story ... So Far - by Zara Bailey

I have been a competitive swimmer from the age of eight. Nearing the end of my being a competitive swimmer, I started thinking of new things, new challenges that would give me a buzz and let me see the fun side of doing sport. At the age of 14 I decided that since I used to be a county runner and I am okay on the bike so why don’t I do it all and go into triathlons and see how I would find it. I struggled a lot academically and realising that I am a hands-on learner I left my main stream school and started at JCB Academy as my dream job was to be a commercial pilot.

Dreams are short lived though. In May 2014 I started losing weight and lost a complete appetite for any food, as it always made me feel ill. Gradually I found myself fighting for breath even walking up the stairs I would have to sit down and take a minute. Due to the lack of oxygen and energy from not eating, every time I stood up, rooms would spin and I wouldn’t be able to see, most of the time I would either fall over with lack of breath or because I couldn’t think straight. All through this time I was saying “Never give up Zara, you can fight this, just take a deep breath and take a minute.” I continued running, swimming and biking even though every time it became a very hard fight to just stand up. I couldn’t stop half way through I needed to finish what I had started. 

Walking into school was harder than it all because I couldn’t pay attention, nothing was staying in my head long enough to write notes. Slowly my work deteriorated and so did my health. I started falling asleep in lessons and would sleep from the moment I got out of school to the moment I got to running. I would do the session struggling so much for breath I would always be stopping. As soon and the session finished I would get in the car and fall back to sleep. Throughout this whole time I was going back and forth to the doctors every time I would know what they would say, “It is a virus it will sort itself out eventually” 

Days went into weeks and weeks went into months however they all became somewhat a blur to me. I was just noticing the dramatic change in my appearance. My hair was lank and dull when at one point it was full of life and looked healthy. Brown pigmentation began to spread up my arms and making its way down my body and up my legs. One day I woke up and realised that my menstrual cycle had become very irregular and then they had just stopped. 

My Mum took me down to the doctor - by this time I couldn’t see the point because they were just going to say the same things over to me again. They took some blood tests and couldn’t see anything wrong apart from having a low white cell count and when I asked about my menstrual cycle they said sometimes these things happen but it should sort itself out in time. 

August 2014, I had completely given up on caring about my personal appearance; my hair was lank and very thin, my face was gaunt and withdrawn with black bags under my eyes that would never disappear and I could no longer fit in size six clothing because I was that thin everything just hung off me. I hated everything about myself because I didn’t know what was wrong with me, I just wanted to be normal. I couldn’t remember the last time I had a good training session, because at this point I struggled to cope whilst I was lying down. 

September 2014, I did the Inter-club Aquathlon, representing Newcastle Triathlon Club. I came 3rd out of the water even though I struggled a lot more than I normally do in swimming. Then I went on to the run, from the very start I couldn’t breathe or think and my vision had gone hazy. On the way back on the run I wasn’t coping very well at all my health was deteriorating fast and I didn’t even know what was happening around me.

After a while my coaches started to worry about where I was so one of them came out to check up on me and she found me collapsed. She said to me, “Zara, you need to stop.” Instead I climbed back up to my feet whilst every muscle and every bone was weighing me down. I started to put one foot in front of the other and jogged to the finish line. My heart felt as if it no longer belonged to myself. At the finish line, I fell to the ground everything wouldn’t stop spinning and I was so out of breath. Nevertheless, I finished that race. I would have never given up and let my team down.

From that day on my health just got worse.

By the end of October I was been taken to the doctors every other day, and yet they were still saying I had a virus. On the 26th October my Mum and Dad thought it would be best if I got out of the house and they would take me to get some fresh air around Stafford. All the way round in every shop I had to stop and sit down on the floor. My head was in my hands I was in so much pain I couldn’t see; rooms were spinning, but at that point something new occurred I could now see spots in my vision that I had never seen before. I was so out of breath and I felt so unfit and I couldn’t take standing up anymore.

Whatever it was making me feel like this, it was finally beating me.

Yet again we made another trip to the doctors. However this time I was to see a different doctor. He checked my blood pressure when I sat down and said it was fine. I found the energy from somewhere to say that “it’s not when I’m sat down it’s when I am stood up.” Yet again he checked my blood pressure but this time when I was stood up. I saw his facial expression change dramatically my blood pressure was exceptionally low.  He said that I should not have been able to stand but like I say I am a fighter.

He got me to sit down again and took his stethoscope from around his neck to listen to my heart-beat. His facial expression changed yet again, he couldn’t put it into words but I remember it clearly as if I was being told it now. “Your heart sounds as if I have a pillow between the stethoscope and my heart, I think you might have fluid round your heart.”  I was rushed into hospital straight into the intensive care unit where no one really knew what was going on. Lots of blood tests and scans were carried out. I was attached to heart machines and had a drip. Five long days later I met my consultant who had been looking at all of my tests and she thought I might I have this illness called Addison’s Disease*; however she wasn’t certain.

She said to me she was going to carry out one last test to see if my kidneys were making any adrenaline at all. When the results came back I had a complete flat line of adrenaline so that made my illness come to light. When I was told that I would have this illness for life, I was distraught I knew I couldn’t do any of the things I had planned. I definitely could no longer be a pilot.

Like I say dreams are short-lived, but it means others can come up and change your whole future. I cried for what seemed like ages but I can remember thinking this is it, I can’t do it anymore it’s too hard. It took months for my tablets to be on a reasonable dose, but I was still tired all the time and not back to myself and this meant I was struggling with school work. 

 

School didn’t understand my illness and they had to arrange a meeting with my consultant which took a very long time, as I now needed carers in school, just in case I ever collapsed, and they would know what to do. I missed nearly three months maybe more of my GCSE year. I was told by my head-teacher I had missed too much to carry on with as many subjects as I was doing so I dropped four of them. As it came closer to the time of my exams I was doing everything I could to try and catch up with what I had missed. Remembering I was still ill and had to do little bits at a time because I would be getting very tired very quickly. I started by going back to school and doing half days and then coming home to get some rest and when I was able to focus I would start doing work and revision at home because my main priority was catching up with everything.
The exam period began and I was allowed to take energy drinks and sweets in my exams so that I could have a sugar boost if I felt tired. When results day finally came I managed to come out with eight GCSE’s in total and my family was so proud of me because I had had such a hard year with the amount of pressure I was under when I finally came out of hospital. 

I was starting to get back into my training slowly, because I couldn’t bear not been able to do all the sport I have always done from day one. When I don’t do sport it is like something is missing, so I knew I had to get back into it and I was going to train as hard as I possibly could. I had decided that I really want to be a triathlete and if I put my mind to it then I could achieve that dream all I need to do is work hard and I’ll get there.

I was still trying to find out all of the right doses that I needed, to keep my body systems level, but that didn’t stop me. The winter came, along with the hard work. I joined in Watt** biking with the club and I came on so much because by the end of all the session I had knocked off a big chunk of time which meant I was one step closer to my goal. 

I have now gone on to Newcastle College and I am studying health and social care level 3. It is hard work but I love it and now because of my illness I have found a new dream a dream of becoming a paediatric nurse and going to Keele University. I have finished my first year there and came out with two distinction stars which I never thought I could do. On the 7th September 2016 I am going back to college to finish my second year and I am hoping to come out with the highest grade of three distinction stars.  

This last year just gone I have done six triathlons. Starting with Wombourne Triathlon and finishing with Hever Castle Triathlon. Throughout the whole year I have slowly progressed and I have been coming in the top ten, which have given me the incentive to train even harder throughout this coming winter. Triathlons have become like a drug to me, as soon as I have finished one I want to get straight back in and do it all again. I have never experienced a buzz like it before and I don’t think I will ever be able to replace it.

However I cannot put into words just how grateful I am for have two amazing coaches and two very supportive parents that have all driven me to try my hardest and to do my best. Even when I am low my Mum will make me realise that I can chase my dreams and nothing can stop me.

There are three particular adults in the club that have gone out of their way to look after me, support me and train with me. Also there is one person of a similar age to myself who has been outstanding, supportive and always there. I could never thank these people enough for what they have done and what they are still doing today.

Throughout this whole time my Mum is the main person to thank because without her I would be dead; she was the only one who knew I was ill and the only one who insisted that I needed to be seen by a doctor. Mum has supported my through so much taking me to and from triathlons, helping me with revision through my exams and just been a fantastic mum she does so much for me she is like no one else I have ever met. 

This is my story and I have written it to let people out there know that whatever you’re fighting, whatever illness you have, you can fight to achieve your goals. It won’t be easy but in the end it all pays off and there will always be hope because you only have to look at the people in the Paralympics to give you the inspiration you need. 

*    Addison’s Disease: A condition caused by the failure of the Adrenal Glands to produce sufficient or any vital hormones.
**   Watt Bike: a static bicycle with digital ability to measure performance and support training plans.

Top row: This was before I was diagnosed. When I looked back on these two photos they scared me because I was that thin I look like a skeleton. Bottom row: 19 months later. These photos have been taken throughout this past year and as you can see there is a dramatic change is appearance. I look healthier now and happier.   

Top row: This was before I was diagnosed. When I looked back on these two photos they scared me because I was that thin I look like a skeleton.
Bottom row: 19 months later. These photos have been taken throughout this past year and as you can see there is a dramatic change is appearance. I look healthier now and happier.