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
New Year is a strange time. For most of my life, since becoming ill as a child, I have been unable to equate it with celebration. For many years the arrival of January was reason to mourn another year destroyed by illness. Nowadays I tread a calmer path, but a wary one nonetheless. What might … More New Year Reflections
A Life Hidden is a year old this week. This milestone is an opportunity to look back on the year that has passed, and also to thank everyone who has supported my writing during this time. On a personal level it has been a difficult year. Shortly after launching the site, I suffered a … More A Life Hidden – the First Year
The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. The BACME guidelines support the biopsychosocial (BPS) model of ME, which holds that deconditioning and the … More Beneath the Surface, Part 3
In Part 1, I highlighted some positive aspects of the BACME guidelines, as well as giving an overview of my concerns. Here, in Part 2, I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address issues of critical importance in severe ME. … More Beneath the Surface, Part 2
The first of a three part series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me. As this is a lengthy piece and will likely be a challenge for those with severe ME, … More Beneath the Surface, Part 1
The following piece was written by Emily Collingridge in 2010 and 2011, and circulated on social media around that time. Emily died in hospital less than a year after completing it. Today I share her writing to mark Severe ME Awareness Day, on 8th August. Nearly 10 years after Emily wrote these powerful words, the situation … More Severe M.E. Awareness Day: Emily’s Appeal
There is an indescribable joy in experiencing the outside world after many months or years of incarceration. The dance of sunlight through the leaves of trees; the flicker of shadows on grass; the touch of a gentle breeze. When darkness and isolation have been the foundation of life, these simple experiences are cherished. There can … More Glimpsing the World: My Joy and Pain
When living with severe ME, making plans can amount to an act of defiance. No matter how carefully laid those plans, no matter how great the determination behind them, there is always the knowledge that they can unravel at any moment, through no fault of your own. When I began my blog last November, my … More Hidden but Still Here
What is the meaning of Christmas when every moment of it is a struggle to exist? When the very foundations of celebration – food and company, music and light – are so physically destructive as to be impossible? When even the presence of loved ones is too much to bear? When the dreadful isolation of … More Christmas Darkness and Light
