Sitting down to begin a new article for Bea, I had a very clear topic in mind.
I planned to write – did, in fact, write – the sorry tale of how those twin roots of evil (politics and money) were preventing the transfer of my care to a specialist neuro-endocrine centre where my (apparent) hypopituitarism could be fully investigated and diagnosed. My situation had changed following a testing disaster in which a horrible and dangerous test (that I very much didn’t want to have) went miserably wrong, leading to catastrophic doubt on the part of the (diabetes) consultant treating me as to exactly what was causing my symptoms.
Furious and stressed, I wove a cathartic and sorry tale: of the polarised – but equally unhelpful – reactions to my plight; of a doctor not expert in the necessary field of medicine extrapolating – to my detriment and from invalid results – what might have been the case had my testing gone according to plan; of assumptions and denied rights and the effects of devolution upon the provision of adequate healthcare in Wales.
Only to have it all – by virtue of a single email that I subsequently received – rendered somewhat invalid.
Instead, I have a different story to tell.
I have fought this illness since before I was even fully aware that I was ill. At seventeen, wrongly diagnosed with depression and prescribed anti-depressants that did not help me at all, I embarked on what became, over the years, a passionate love affair with exercise. I learned karate, went swimming, did aerobics and played badminton – not recognising, exactly, that sport helped me to stay positive and to gain energy, but knowing instinctively that it was doing me good even though it never seemed to cure me of my teenage podginess. At university, I expanded my repertoire of activities and eschewed buses and lifts in favour of cycling and walking everywhere. I learned to accept my fluctuating weight, to deal with pain, to control my wayward emotions (well, mostly) and to catnap whenever I could to boost my energy levels. Every so often, I would tell my GP how oddly tough my life seemed to be; every so often I’d have some rudimentary blood tests. They’d all come up negative and I would continue on as before.
And so I went through life, integrating the management of my unexplained symptoms with my work and my family, even after the dramatic decline in my health shortly after my third child arrived and I was diagnosed with hypothyroidism.
Exercise, sleep, pacing, acceptance – these were my weapons.
But, when it became clear that my youngest daughter was also affected by whatever disease was plaguing me, my fight evolved. It became a battle for credence, understanding, and to be heard. Slowly, insidiously, I was getting more and more ill, my quality of life deteriorating even as I watched my beautiful little girl develop increasingly devastating symptoms of her own. My weaponry became more varied as I taught myself to research; to document; to understand often very complicated medical issues and testing protocols. We say that knowledge is power but, in this scenario, it became self-defeating. The more I knew, the more the doctors I pleaded with to help me seemed to despise me. And so resilient, frustrated persistence became my default setting.
I’ve written more letters than I can remember – I was reminded of some when my request for access to my medical records was partially fulfilled (the health board refused to send me my notes in their entirety). I’ve endured a forced psychiatric evaluation – which was aimed at proving me mentally unstable, and not physically ill at all, but which, instead, gave me yet more confidence in the essential stability of my mind. I’ve argued and pleaded until blue in the face and drowning in my own tears of rage and despair. And all, until recently, to no avail.
And then came the dynamic blood test (in which a substance called glucagon was used to stimulate my pituitary gland and hourly blood draws were taken to assess its response) that provided a diagnosis at long last – hypopituitarism. Vindication, whilst it lasted, was a wonderful – if somewhat conflicted – feeling. A few months later, I was back to square one when a second, different dynamic test miscarried and yet nevertheless was taken as evidence that my original diagnosis was wrong. Facing my worst fear, I did all that I could to overturn that decision but was forced to accept that there was absolutely nothing left for me to try. I needed to attend the specialist centre for further assessment but I was – or so I believed – being stonewalled.
I don’t know which of my tactics it was that paid off but, in the end, the right outcome was reached. It’ll take a few months, but I am going to be seen by a pituitary specialist. Thus, my story has a moral: never surrender. I fought on every level – to be as healthy and as fit as I could be despite my illness; to be heard; to make progress; for my daughter – and I refused to give up (although at times I really thought I had).
There were muted celebrations in our house when the news that I was to be referred on to the specialist arrived via email. We all learned our lesson the last time I became over-confident that answers and treatment were finally within my grasp. Yet we are celebrating and we are cautiously optimistic.
Let’s hope that my different story has a happy ending.