We’ve recently returned from a hectic family holiday to the Peak District. Eleven chatty adults, two monkey toddlers and a dog. It was lively! 😛 But amazingly my body coped brilliantly- it was one of my strongest holidays since developing PH. It seems I have completely bounced back from my unexplained deterioration of last autumn. … More Putting My Body To The Test
We were only two months into 2018, but it felt longer. It seemed an age since Phil and I had welcomed in the new year with our friends. For the last eight weeks we’d been living life on a roller-coaster. Ups and downs and ups and downs… and even the odd loop-the-loop. We were ready … More A Break From The Rollercoaster
I’m no longer on the transplant list. It seems odd. For nineteen months, the wait for new lungs has been at the centre of my life. Not one day has passed when I haven’t been affected by being on the list, thought about it, or dreamed of the endless possibilities afterwards. So it seems strange, … More Taken Off The Transplant List
It was supposed to be an uneventful stay at the Brompton. A routine biannual checkup. I was expecting four days of tests and procedures and assessments. Four days of poking and puffing and prodding. Four days of Netflix films and tea machines and yummy three course meals. I wasn’t expecting a ride on an emotional … More Coping With Surprising Results
I stared at the little dot on my computer screen, willing the minutes to pass by, so I could see it jump forward towards the safety of the emergency hut. Suddenly the group around him inched ahead… but Phil remained behind. Why had he stopped? Had the storm blown him off the summit? Breath held … More Worrying From Afar
Last week my hospital consultant told me she was wondering if I was now too stable to be on the transplant list. She tentatively suggested I be taken off it for the time being. Suspended for a while. Put on pause until I start to deteriorate again. I was shocked. Gobsmacked. Maybe I should have … More Am I Going To Be Suspended From The Transplant List?
I don’t know all of the words to ‘Auld Lang Syne’. Apparently only 3% of the population do. Every new year, when the clock strikes twelve and the singing of the traditional song begins, I repeat the same lines for every verse… and vow to learn it properly in the next twelve months. Lalalala-ing to … More Welcoming In 2018
I remember the first Christmas Phil spent with my family. Mere hours after our arrival, he disappeared. I found him lying on my childhood bed, in silence, eyes staring at the ceiling. He needed a break from us. From the noise and over-excitement and frenzied activity. I recall being puzzled… why couldn’t he cope in … More Sensory Overload
I adore the countdown to Christmas. As the first drawer on my advent calendar is opened, life suddenly becomes more magical and exciting. One whole month surrounded by twinkly lights, sparkly tinsel and memory-laden tree decorations. Four weeks of planning and shopping and wrapping and giving. Twenty-four days of indulging on Christmas films, Christmas chocolates, … More Finding My Christmas Spirit
I didn’t realise anything was wrong until I tried to lie down to sleep. Every time I approached horizontal, something squelched in my chest. I could feel the gunk and goo moving around as I tried desperately to cough it away. My breathing sounded odd, like something was blocking the windpipe. That night, I tossed … More The Chest Infection
We Can Adjust The Sails 