Gym at 6.30am followed by a G&T 12 hours later. For women who want to live life at their optimum, energy is currency. So, when an illness strikes that robs you of it, you’re left feeling not only devastated, but invisible, too. Here, one writer shares how witnessing up close chronic fatigue syndrome or also known as myalgic encephalomyelitis - a condition which many long Covid sufferers now qualify for a diagnosis of - has taught her that energy is not a certainty, but a privilege.
Sprawled on my bed at home in Lincolnshire, I was thumbing through the newly released Harry Potter And The Half-Blood Prince when I heard a distressing moan coming from my mum’s room. Entering slowly, I found her, sweat-soaked duvet cast aside, writhing on the bed as her limbs shook uncontrollably and she tried to fix her frightened eyes on me.
That day back in 2005, when I was 12 years old, was the first time my mum, Liane, then 45, found herself caught in the vicious throes of what was later diagnosed as myalgic encephalomyelitis (ME) – also known as
chronic fatigue syndrome (CFS). Initial blood tests failed to reveal why Mum had suddenly become so sick and completely devoid of energy. After six months – having ruled out everything from glandular fever and thyroid problems to
Lyme disease and multiple sclerosis – her baffled GP diagnosed her with ME/ CFS (the slash is mandatory for medico-political reasons – more on that later) and later referred her to a musculoskeletal and autoimmune specialist.
In the years that followed, I watched as the unstoppable force that was the mum I’d grown up with – the energiser who took charge and galvanised everyone around her to get shit done – became relegated to bed for hours, days, weeks on end. My early teens were spent tiptoeing around our house while she rested. She was forced to turn her back on the 20-year career she’d built as a sexual and reproductive health doctor and my father negotiated fewer hours as an optometrist to try to navigate the dual role of primary carer and family breadwinner. Her long-time friends who failed to understand why Mum could be bed-bound by early afternoon because she’d done a food shop that morning began to drift away.
