In the subsequent weeks and months, Amy’s condition worsened. As a former fashion buyer, she recounts feelings of weakness and faintness, often needing to crawl to her daughter’s room during the night.
“For me, the symptoms came on overnight and haven’t lifted since,” shared Amy from Nottingham, England.
“I felt a level of fatigue that I could never have imagined as a healthy person – my heart would race when I would roll over in bed as if I’d just run up a flight of stairs.
“My legs were so weak that I felt my knees would buckle after standing for just a few minutes.”
Six months and several blood tests later, her doctor initially diagnosed her with ME (myalgic encephalomyelitis), known as chronic fatigue syndrome, which is characterized by severe fatigue and other symptoms.
Dissatisfied with the drastic change in her lifestyle—from social outings with friends to being confined to bed for entire days—Amy sought further answers. In 2022, she traveled to Barcelona, Spain, to consult a specialist, who ultimately diagnosed her with craniocervical instability (CCI). This rare condition involves the skull’s improper attachment to the spine.
Treatments range from expensive, harsh surgeries abroad to costly stem cell injections. Amy remains hopeful for a solution, as she often finds herself bedridden, feeling as though her life has been ‘put on hold’ for nearly a decade.
The challenging surgery is available in Spain for just under $100,000, whereas in the US, it costs around $250,000. Additionally, Amy requires a separate operation to address her tethered spinal cord, estimated between £17,000 and £20,000.
To finance her surgery, she launched Not Dead Apparel in 2023, a clothing line featuring caps, t-shirts, jumpers, and bags with humor-laden slogans like ‘Tired Girl’s Club’, ‘Live. Laugh. Lie Down.’ and ‘Wish you weren’t here’.
Amy reflected on her situation: “There are so many hard pills to swallow with this illness, but I think for me it’s the social isolation.
“I used to be the life and soul of the party and inside I still have that energy and zest for life, but my body can’t express it without dreadful consequences.”
“I’ve been unwell for almost eight years now so people barely remember the true me – I feel like I grieve for her most days.”
To support her medical expenses, Amy has set up a GoFundMe page, with all proceeds from her clothing line also directed towards her surgical costs.