“Though nobody can go back and make a new beginning…..Anyone can start over and make a new ending.” Chico Xavier

My journey into the world of pituitary diagnosis came suddenly and without warning. My first attempt to write this piece focussed on the pain and trauma that the few weeks in October 2008 produced – the pain of which is still etched clearly in my memory. Since then, the journey has developed from the initial thunderbolt shock of realising that your life has changed irreversibly, the fear of not knowing what the future holds, the grieving for the person you were before, the shattering of your dreams, to the acceptance of how things are, to finally, the hope and joy for the future.

I was 28 years old with 2 very young children, when I suffered a pituitary apoplexy. In those moments, I suddenly became totally reliant on the wisdom and knowledge of the doctors and the hospital staff. I was suddenly confronted with my own mortality and the frailty of life. I was told that I was lucky the bleed had not spread to the rest of my brain – there was some uncertainty surrounding the cause of the problem. In those moments of fear and uncertainty, I clung to my faith in God like a limpet to a rock – I could do nothing else.

Initially, I didn’t understand the impact of the loss of pituitary function. My main concern was that I was unable to have any more children. I grieved this loss, but rejoiced in the fact that I had two beautiful children already – a blessing. It has only been in the years since then, that I am becoming more aware of the everyday impact of not producing cortisol – this amazing hormone that effects every part of our physical and mental health.

In the early days, life was strange – recovery was a long and laborious process. My brain reacted in ways that I wasn’t prepared for and was unsure how to handle. Life went on around me and I felt like I was isolated in a bubble that no-one understood – and yet I didn’t want to talk about it. I couldn’t handle small stresses and my speech and memory were effected – I couldn’t formulate or think of the words I wanted to say. I didn’t feel like myself and felt like my body wasn’t my own – I couldn’t predict its behaviour or trust it to do what I wanted it to do.

One of the hardest things has been my body’s reaction to low cortisol. These symptoms can be difficult to explain, and I assume they can be slightly different for each person. Strong nausea and sometimes overwhelming and abnormal anxiety can be common symptoms for me. Sometimes, I describe it like someone is turning off all the lights in an office – it’s getting gradually darker but you don’t notice until the last light is off. I have also adjusted when to take my tablets to fit in with how my life is running at the time. With four young children who rise early but go to bed early, at the moment I take my tablets much earlier than average. I am sure that as the challenges I face change, then I will need to adapt again.

To cut a very long story short, nearly eight years on, I am constantly amazed by the healing power of our bodies – both mentally and physically. I now have four miraculous children and am studying for a degree in psychology. This year, I also took part in a Tough Mudder race for the charity ‘Mind’ – and I would like to do another challenge for The Pituitary Foundation. This was significant for me as I felt like I was challenging my own fears and the limitations I had put upon myself. Some days though, the challenge of getting out of bed and keeping a positive attitude is enough of an obstacle in itself!

Undoubtedly, I still have a long journey ahead – to live with a cortisol deficiency is to live with something that many will never understand – and that is too complicated to explain. And yet, I am growing to appreciate the story of my life and the challenges I have faced – I reflect that I am humbled when I read of others stories and meet others who have their own stories to tell, and I am forever in awe of the miracle of our bodies – I never appreciated it fully before. I thank God for the support of my incredible husband and family who have been immensely tolerant with me. And my consultant – who has been a patient, loyal doctor and friend over these many years.

Every so often, something happens to remind me of the seriousness of my condition – when some kind of stress occurs outside of my control and my body reacts without consulting my brain! Sometimes this can be as simple as a bad cold, a sickness bug, a child breaking their arm, your husband dislocating his knee……. Sometimes it is merely when I have misjudged the stress of the day, and suddenly I feel like it is the middle of the night at 6pm! As time goes on, I am becoming more comfortable in knowing my own limits, although it can be frustrating and awkward to explain this to others. I am thankful for the medical personnel around who have heard of and understand the condition.

However, as I reflect on all that has happened in the past, I am reminded of a quote by C S Lewis – “There are far, far better things ahead than any we leave behind.” I want to encourage each of you that happen to read this – whatever stage you are at in your diagnosis or condition, the future is good. You will get through this and you will emerge a better, stronger person than you were before. People may never understand your journey or your limitations, but you can adapt and you can thrive – and there is always help to be found for those that need it.