A Pea Size Problem

My life in 2014, early 2015 was turned upside down when I was taken chronically ill, very suddenly by what I now call my ‘pea size problem’.

The beginning

It had been a very stressful year at work and I was experiencing severe headaches. A small marble lump appeared on my face by my right ear. I continued to see my GP even though I hate going, but something just did not feel right! A CT scan showed nothing but, by early November, I still felt very unwell. I struggled at work and my joints had now become very painful. The headaches were so intense it felt like I had been punched, with pain spreading around the back of my head, and my face had started to swell. In December I became chronically unwell and was continuously vomiting. December became a cycle of continuous trips to emergency doctors’ appointments and A&E. My joints, by this point, had become so painful that I couldn’t even unwrap my Christmas presents and I ended up going to the hospital in a wheelchair.

The route to diagnosis

At the hospital, they first thought my symptoms were presenting as parotid cancer, lymphoma and then neuro sarcoidosis. I was incredibly frightened and in utter disbelief, having previously always been healthy.  MRI, CT scans, lumbar punctures, biopsies and theatre followed, but nothing gave a diagnosis and therefore no treatment as they didn’t want to mask anything.

After a month in hospital, I was discharged without a treatment plan or diagnosis and quickly took a turn for the worse. This was the point I first met my endocrinologist and I am grateful to be under her care. Treatment started with steroids, but eventually, after nose bleeds and distorted vision, I had a pituitary biopsy. What I am left with is a diagnosis of lymphocytic hypophysis resulting in pan hypopituitarism. This pituitary condition, whilst rare, is most commonly found during or after childbirth. I have not yet had children and therefore I think I remain a medical mystery.

Secondary Addison’s

As a result of my pituitary condition, I have secondary Addison’s disease which means my body does not produce enough cortisol. Unfortunately, I have had several Addison’s crises.  I become so disorientated and out of it that I had to let my family take charge and get an ambulance ASAP. Thinking about what could have happened if I didn’t get emergency hydrocortisone in time is terrifying. The last Addison’s crisis left me so shaken and anxious that I cried every time I left the house. I thought I would recognise signs early and manage it before the critical point but, for anyone who also suffers, they will know it is never that straight forward and the onset is often too rapid to respond fast enough. My symptoms are different every time.

Diabetes insipidus

I also have diabetes insipidus. When this flares up I feel the need to drink anything and everything. My body can’t regulate water properly so there is no easy solution. Even if I didn’t drink I would still want to wee, which means that I would be at risk of becoming dangerously dehydrated. I sometimes get so thirsty that condensation on windows looks appealing. It’s like an out of body experience and I can’t really focus properly until I have quenched the thirst; an impossible thing to do. According to the NHS website, in very severe cases of diabetes insipidus, up to 20 litres of urine can be passed in a day. TRUST me I’ve been here. I can only tell you: it is utterly exhausting but entirely possible. In the beginning I found it very hard to manage as it can disrupt even the simplest of days. Chatting with friends, going to the supermarket and commuting to work all became challenging. After a while you get more practised, prepare better and learn a few tricks. I used to be really embarrassed but I have found it helpful to talk and laugh about it with my family, my colleagues and friends. If I have to dash to the toilet, if I have to down lots of drinks or leave a meeting mid-way through, there’s now an understanding there. I quite regularly drink nine litres a day and I hope that all this water keeps my skin youthful and my nails strong. I mean there’s got to be some perks!

The ambiguity of my condition is hard to manage and probably the biggest emotional rollercoaster. I can be heading upwards one day or for months and then all of a sudden I tip over the edge. Thankfully as time goes on, I know I can climb to the top each time with the support of those around me.  At the beginning, as I didn’t have a concrete diagnosis, I didn’t feel able to ask for advice. I now write a blog as I am passionate about raising awareness of pituitary conditions (‘A Pea Size Problem’). Hidden illnesses are often isolating: to the outward world you appear normal but inside you are constantly fighting to survive and gain a sense of normality. I feel like my pituitary condition has robbed me of spontaneity and some of my personality. It is the hardest pill to swallow and, despite having to take a nice selection of physical pills each day, they are a piece of cake compared to this! I know I am lucky to be alive and I try and remain positive throughout. Humour can be found in the unlikeliest places and has kept me going. It’s true what they say – ‘laughter is the best medicine’.

About Sarah

Sarah blogs about her experiences of living with a rare condition on her site ‘A pea sized problem’. She can also be found on the Twitter handle @sbm44.

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