Christmas can be an especially difficult time for those living with severe ME. This year, for the first time, I write of my experience as the loved one of someone severely affected by the illness. I see him in the hushed beauty of a winter sky; in the gold-streaked clouds of an expectant dawn. I … More The Enduring Light of Love
In May this year, I wrote about my friend Kara and her dream of recording an album. Gravely ill with ME, Kara had written a collection of songs that expressed her emotions as her health declined. With the help of a family friend, she had recorded the vocals one line at a time – a … More Musical Alchemy from the Darkness of Suffering
Like dawn glimpsed through a curtained window, normality is returning to the world beyond my walls. Restrictions remain, but I once again live in a country where people take holidays and visit loved ones. Where bars, restaurants and shops are alive, and not just shuttered memories. For a few months this spring, the rhythm of … More The Uncertainty of Life After Lockdown
Seven years ago today, my first article in The Daily Telegraph was published. It told of the suffering and death of my dear friend Emily Collingridge. Emily had been passionate about raising awareness of ME, and I couldn’t bear the thought of her death passing unnoticed by the wider world. I wrote a piece about … More Emily, My Inspiration
I have written many words on living with chronic illness – but relatively few about the struggles faced by those caring for us. This week (8th – 14th June) is Carers Week, an annual event raising awareness of the millions of adults and children who care for a loved one. The number has … More The Hidden Lives of Carers
A week ago today, I shared a special post on my friend, Kara. When I hit publish, I hoped that one or two people might come forward to help. It seemed a big ask, but I wanted to believe that something might be possible. It’s fair to say that neither Kara nor I could … More This Is Love: An Update
Kara Jane is a singer with a voice that touches the heart. Its sweet, clear tone conveys both vulnerability and strength, creating a heartfelt connection with her audience. There is a melancholic quality too, hinting at a deeper pain: Kara is seriously ill with ME, with a life expectancy that could be very limited. … More This Is Love: An Appeal to Musicians
On the eve of 2020, in New Year Reflections, I looked back on a difficult 2019 and asked: “What might I be called upon to face this year?” I could not have imagined what lay ahead – not only for me, but for the entire world. Living through the coronavirus pandemic is both a global … More Life in Lockdown: What Matters When All Is Lost
Life has been painful, of late. Circumstances have brought a profound awareness of my limitations. The ongoing serious illness of someone I love. The approaching first anniversary of my father’s death; the fact that I was too ill to visit the intensive care unit where he spent the final month of his life. … More When Coping Is Too Much
Today is the 30th anniversary of the day I became ill. How surreal those words sound, even after three decades spent adjusting to them. My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as a healthy young girl, thirty hours … More 30 Years Beyond Comprehension
A Life Hidden 