Are you Rare? Are you one of the 3.5 million people in the UK with an LTHC that fall into this category? I have two conditions that do. EDS and Addison’s Disease — my story is below.
My ‘actual’ diagnosis came through an unconventional route. A tremor developed in my hand. Headaches, dizziness, sickness and being run down were daily features. A brain scan followed. 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.
For someone who had just battled through training for and running in a London Marathon leading an active social life and working at an amazing job, this was a real shock.
Tests and scans were now a part of everyday living. The terms LH, FHS, progesterone, prolactin, and cortisol formed part of everyday language. 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.
Turbulent years followed. Battling to find a treatment I could tolerate. A need to suppress 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 and the associated autonomic dysfunction, dislocating and subluxing joints and bowel/bladder problems.
Another twist came as I tumbled down the road into pituitary insufficiency and then further into Addison’s. The diagnosis hit hard. Fear set in. Everyday normalities became mental battles.
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.
Some luck was to lead me down a different path. I fell into two things that kept me going. A Para-Swimming career ensued. I joined a local swimming club. It supported my mental health and general well-being. After classification, things progressed fast: 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.
The Pituitary Foundation filled the other part of that void. I became an Official Campaigner. Initially supporting on social media, taking leaflets everywhere. Telling anyone I could about the perils and challenges of all things Pituitary.
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.
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.
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.
Writing gives me so much. The research enables me to refresh and extend my knowledge. Reminds me of things I have forgotten —things I can try — new hobbies.
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. Using the technology available to log my symptoms, analyse and move forward. The FITR app (menstrual cycle) has become an essential part of this.
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 pain management and sleep management plans. Using Tame The Beast and Livewell guides.
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. Trying to navigate along the right pathway. Taking as much from the experts as I can. But 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.
Helpful links:
Tame the Beast: https://www.tamethebeast.org
Livewell Sleep Plan:http://my.livewellwithpain.co.uk/wp-content/uploads/sleep-leaflet.pdf
Colour Wheel of Emotions: https://feelingswheel.com