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Emily became ill following two viruses at end of 2023.
A fuse switched off and I took sick leave for a week, which became months.
Before becoming ill, Emily lived a busy life doing daily hikes with her dog, supporting her community garden and working in an emotionally intensive job in health & social care. Sadly, Emily’s health continued to deteriorate.
“In March 24, the main fuse went. For the following six months, I struggled to sit up and became highly sensitised to noise, light and smell. I could occasionally manage 3–5-minute slow walking on flat but had to always crawl upstairs and often couldn’t walk from room to room. Having a bath or having a 15-minute support call, whilst soothing to me, were high-demand and rare activities. I couldn’t learn anything new, and my memory and concentration were severely affected. My energy was devoted to following guidance on rest and handling urgent practical needs.”
Nine months after first being signed off sick, Emily had to take redundancy from a job she had loved for 15 years.
Emily had contacted our Information & Support Service four months after becoming ill and had found the pacing tools and peer support services offered very helpful. She also found out about the Action for ME healthcare services and made an appointment with our physiotherapy team.
“There was a short wait for physio. It seemed long at the time because I was functioning hour by hour. During that time, I was accessing pacing tools from Action for ME and adjusting down my activity to levels that didn’t set me back.”
Our physiotherapist helped Emily to continue adjusting her activity and find a point of stabilisation at around 30% functional capability.
“Once I’d learned to stabilise and recalibrate, choices became clearer. By practising frequent therapeutic resting and accessing as much of my life and loved ones as possible, without pushing, improvements slowly happened.”
As Emily’s physical condition stabilised, the emotional impact of her illness became more pronounced.
“As my capacity improved, the emotional turbulence submerged beneath severe fatigue joined the mental anguish that had remained loud.”
Emily found that accessing support through our Chaplaincy service was incredibly helpful at this point.
“Ruth, chaplain, accompanied me on my ‘way’. It’s impossible to articulate what this means to me. Ruth adjusts with my fluctuating capacity and allows so much space for all the loss, confusion, doubt, fear and anger.”
“Thank you because this service has unequivocally believed and recognised and guided me through this experience.
Thank you because I was so frightened and confused and my lifelong capacity to self-advocate was severely hampered.
Thank you because I am now stabilised at 60% functional capability, more than twice where I was at my worst. I appreciate love and joy in my life more than ever before.”
