I’ve not been myself for eight weeks now. Eight frustrating long weeks. During my favourite season of the year, at the point where my diary is chock-a-block full of plans… I have instead spent most days lying about in my pyjamas. If I’m honest, this has turned into the summer of the sofa. 😦 The … More The Summer Of The Sofa
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
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’ve had a great start to 2017. Throughout January and February, my health has been stable, so I’ve taken advantage of my plateaued condition by filling the calendar. For me, it’s important to make memories, see people, live life whilst I still can. A catch up, a night away, a day trip, a dinner party. Something … More A Month of Illness
It took eight years for me to get a diagnosis. Eight years of wondering and worrying, speculating and self-diagnosing. From my early twenties, to my dramatic collapse at 32, I knew there was something medically wrong. I had started to walk slower, swim slower, run slower than my peers. Despite moving at half their speed, … More Solving The Puzzle
I remember the first time I felt like my throat was closing up. One Friday night, back in 2005, Phil and I were sipping red wine and listening to some Damien Rice songs. Suddenly I felt strange. My throat had closed up. Literally in a second, my throat had sealed shut, and my next normal … More Throat Spasms -Will I Be Kicked Off The List?
I’d got it in to my head that I was deteriorating. I was conscious that this time last year my health had shot rapidly downwards, so when I started to feel ‘different’, I assumed that history was about to repeat itself. For two months, from the end of October to the start of December, I … More Nervous, Nervous, Nervous
Four year ago I was full of energy. Teaching is demanding, all-consuming, busy. Never enough hours in the day, I became a multi-tasking octopus. In one moment, I’d be counting coins with a group, observing a few playing shop, and soothing another one’s tears. Break times were for tidying away the last lesson, setting up … More Managing My Energy
Until this week, I had never visited an Intensive Care Unit (ICU). Never visited as a patient. Never visited as a relative or a friend. The picture of it in my head had only been formed from watching ‘Casualty’ every Saturday night as a child, and binges of ’24 Hours in A&E’ more recently. Through … More Visiting Intensive Care
I last had a hospital appointment in June, three lovely long months ago. Since then I’ve been deliberately postponing them. I’ve received monthly letters from my Pulmonary Hypertension team inviting me along for a check up. I turned down June, I turned down July, I turned down August, I eventually agreed to go along in … More Time For A Check Up
We Can Adjust The Sails 