When I was first diagnosed with ‘Pulmonary Venous Occlusive Disease’, I asked my consultant how much time I had left. He screwed his mouth up, scrunched his forehead, and pulled a ‘bad news’ face. In that one reaction, I knew it would be distressing. And I also knew I wasn’t ready to hear that. So … More The Prognosis
When I was little, my village organised wonderful play-schemes during the summer holidays. They were the highlight of the long school break, with a dozen exciting trips or games or crafts to choose from each day. As each activity was allocated first-come-first-served, we’d all race to school each morning, eager to see the day’s offerings. … More Watching The World Float By
For me, Summer isn’t Summer without a ‘Great British Holiday’. Sandcastles and sandals and sticks of rock. Postcards and promenades and pots of tea. Fending off the scavenging seagulls whilst munching on vinegar-soaked chips. Binge-reading piles of tourist-attraction leaflets whilst licking ice cream. Watching boats, jumping waves, collecting pebbles. Paying admissions, taking photos, ambling around … More A Great British Holiday
It is the day after yesterday. The day after the fun. The day after the meeting and hugging, the laughing and teasing, the catching up and reminiscing. The day after the singing and talking until the lungs couldn’t cope. The day after the walking and moving until the body got weak. The day after the … More The Day After Yesterday
The ‘PHA UK Conference’ is a much anticipated event in the world of Pulmonary Hypertension! 🙂 Tickets are requested months in advance, nervous chattering proceeds the emails stating if a place has been offered, and excited plans are made in the days leading up to the event. A chance to meet Facebook friends, learn more about … More The PHA UK Conference 2017
I’m 36. An adult. A grown up. Yet I won’t stray far from my village if I’m on my own! Rewind to life before my illness, and it was very different. I’d catch buses and trains and planes alone. I’d explore cities and towns and villages alone. I’d visit people and places and parties alone. … More Learning To Trust Other People
At the start of March, I had four weeks of unexplained illness. For a month, I lay fatigued on the sofa, my oxygen saturations dropping every time I moved. My PH consultant had seen me during this time, so was keen for me to be admitted to the Brompton for more detailed tests, to gauge … More A Quick Hospital Stay
I first met my ‘Girlies’ at university. We each joined the canoe club during Freshers Week, the only four girls from our year group: we were outnumbered. But it wasn’t until a couple of week later, our first weekend away kayaking, that we really bonded. After a day of paddling and swimming down a scary … More The Girlies Who Wouldn’t Let Me Hide
A fortnight ago something monumental happened. After many years of waiting and asking and being told “Not yet”, we eventually got to babysit the nephews overnight! As they’ve never before had bedtime away from their parents, it was a big deal for us all. My sister and Adam had their first date night in six years, Jacob … More The Nephews First Sleepover!
In 2012, my brother-in-law’s father sadly died after a short illness. At the time my eldest nephew Jacob was only 15 months old. His Grandad was a lovely man who clearly adored him, and was a significant part of his life up until that point. But he died when Jacob was young, very young, too … More Will They Remember Me?
We Can Adjust The Sails 