Through October The Pituitary Foundation aim to increase awareness of pituitary conditions. Encouraging patients to share their stories to support those who are newly diagnosed. Conditions that often take over 6 years to be confirmed. These can be lifelong and life-altering.
Here is my contribution*.
Although my Pituitary journey officially began in 2008 I’m convinced it began long ago as a child. I can recognise the signs and symptoms. Especially when faced with stressful situations. Times when exercising at high levels of intensity in sporting activities.
My ‘actual’ diagnosis came through an unconventional route, as it does for many. A tremor developed in my hand. Headaches, dizziness, sickness and being run down were daily features. Due to the tremors, I was referred to a neurologist. He gave me the choice between living with it and not knowing if there was anything serious, or having a brain scan. Stating there was a 25% chance of something showing. Am I glad I had that scan? YES! However, my follow-up was very brief and was pushed out of the door rather quickly, only being told a lesion had been found.
Left waiting and wondering for 2 weeks was not helped by a letter that hit the doormat talking about Pituitary Surgery. Before being connected with an Endocrinologist. Pituitary Adenoma with Apoplexy was the diagnosis I got and needed. For someone who had just battled through training for and running in a London Marathon (completing it somehow) leading an active social life and working at an amazing job, this was a real shock.
Numerous tests and scans were now a part of everyday living. The terms LH, FHS, progesterone, prolactin, and cortisol formed part of everyday language. At one point my prolactin levels rocketed from a secure 150-7500 in a matter of 3 months. A battle with medications and side effects ensued. Including three long years with no periods at all. Infertility also surfaced and my consultant urged me to grieve. I don’t think I will ever fully accept that. For me, that’s been the hardest part of the process.
A few turbulent years were to follow. With the battle to find a treatment, I could tolerate. Needed to suppress the prolactin. The impact of a decline in neurological health, and the return of chronic fatigue/pain, I had suffered with at varying levels since a teenager. Largely down to Ehlers-Danlos.
Another twist came as I tumbled down the road into pituitary insufficiency and then further into Addison’s. The diagnosis hit me hard. Fear set in and everyday normalities became mental battles. Shock packs and careful monitoring. Now having to manage both pituitary insufficiency and hyperprolactinemia. By this time I had lost not only my health but my career, sporting activities, hobbies and purpose in life.
Added stress and struggles of my brother's illness and subsequent death sent my mental health tumbling. Later that year a Psychotic Episode occurred to make matters more complex. Careful medication monitoring is key for me. Balancing hydrocortisone with antipsychotic medication is difficult. The withdrawal of Cabergoline (for prolactin) was essential.
Some luck was to lead me down a different path. I fell into two things that kept me going. A Para-Swimming career ensued. Looking for a sporting hobby I joined a local swimming club. It supported my mental health and general well-being. After classification, things progressed fast: achieving National titles, swimming in International events, and breaking British Records. Even travelling to Nice to participate in the European Masters Games. Working with top coaches and training with elite athletes. All amazing experiences and unexpected.
The Pituitary Foundation filled the other part of that void. I became an Official Campaigner. Initially supporting on social media, taking leaflets everywhere - hospitals, swimming pools, doctors! Telling anyone I could about the perils and challenges of all things Pituitary. The understanding of the hours put in made it easier to feel like I’d contributed. I could help when I felt well but pull back when not.
Creating Time To Heal was a way I thought I could help others face the same battles as I did. Proud of my website and the message it aims to promote. At the centre of the website is my quirky and creative blog. The spelling and grammar may not be perfect but they all come from the heart. Being added to The Pituitary Foundations’ list of patient blogs gave me great satisfaction.
In addition, I was asked to become an Active Essex Disability Ambassador for the Essex All Together programme. It aims to inspire, support, promote and deliver accessible exercise and sports provision for a broad range of LTHCs and Disabilities. My work has been celebrated with a page of my own on the Active Essex Website, through the Active Essex Sports Awards and within Ambassador Team Meetings.
Both volunteer roles have allowed me to help people and learn new skills. Gives me the belief that getting back to work, socialising more, and living a more independent lifestyle is there waiting.
Then COVID hit. My volunteering changed for the better. Became more structured. Writing blogs also gives me so much. The research enables me to refresh my knowledge and remember my sick day rules. Reminds me of things I have forgotten. Things I can try. Picking up new hobbies like Disney animation and gardening. Great for my mental health and my love of all things sports continues.
Stumbling across new strategies like the use of Geoffrey Roberts's colour wheel of emotions and feelings. Focusing on what works well and what doesn’t. Alongside careful day plans, pacing and controlling as much as possible. Regulating medication times. Use the technology available to log my symptoms, analyse and move forward. The FITR app (menstrual cycle) has become an essential part of this.
The contribution of Endocrinology, Psychiatry, Rheumatology, Neurology, Maxillofacial and Pain clinic are all involved ‘in my team’.It gets complicated and takes painstaking monitoring, analysis, note keeping and a huge amount of time listening to my body. I have the beginnings of pain management and sleep management plans. Using Tame The Beast and Livewell guides. More to come but more treatments are developing and that’s all I need. Some hope, some guidance, support and understanding.
There’s always more to come, difficulties ahead, and things I can’t control. Coming out of lockdown has been a challenge and that continues. But for now, I feel content that forwards is the way to go. Trying to navigate along the right pathway. Taking as much from the experts as I can. Patience is a given. The NHS need to catch up from the pandemic, that has affected us all so much.
Plus, I have the most incredible woman by my side. My Mum is my rock, my carer, my supporter and even my editor! To her, I owe so much.
Links
Tame the Beast
Livewell Sleep Plan
Colour Wheel of Emotions
*Please remember that these blogs are very real to us. We are on the same journey. It’s tough, slow and frustrating. Most of the Scenarios we face ourselves. Sometimes we find what we print useful. Other times we don’t. It’s included because everyone's journey is different. We have passionate perseverance to help others. To dispose of all content would be a waste and a disservice to our readers.