A mom has told how she 'grieves' for her old self having been the 'life and soul of the party' following a shock diagnosis of a chronic condition she didn't realize she had.
In 2017, Amy Wood's life was flipped upside down after her daughter Willow returned home from nursery with glandular fever - a viral infection that causes extreme tiredness, swollen glands in the neck and a high temperature.
It was passed on from Willow, who recovered within a week, to a then 31-year-old Amy, who has been unable to shake it since.
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In the weeks and months that followed, her symptoms worsened and the former fashion buyer recalls how she felt 'weak' and 'faint' and had to crawl to and from her daughter’s bedroom if she woke up at night.
“For me, the symptoms came on overnight and haven’t lifted since,” Amy, from Nottingham in England, said.
“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 later, after several blood tests, her GP initially diagnosed her with ME (myalgic encephalomyelitis) - otherwise known as chronic fatigue syndrome, a condition that causes extreme tiredness among other symptoms.
Unhappy with how her life had drastically changed from going out with her friends to now going entire days bed-bound, she pushed for further answers and traveled to Barcelona, Spain, in 2022 to see a specialist, who in the end diagnosed her with craniocervical instability (CCI).
This is a rare medical condition where the skull is not securely attached to the spine.
Treatments for the condition vary from expensive 'brutal' surgeries overseas, to costly stem cell injections. But Amy hopes a remedy is on the horizon as there are days she is bed-bound and she feels like her life has been 'put on hold' for nearly a decade.
The 'brutal' surgery is available to her in Spain at a cost of just under $100,000, while it's also available in the US for around $250,000.
Amy added she must also have an operation to release her tethered spinal cord, which could cost between £17,000 and £20,000.
To help raise funds for her to go under the knife, she launched her own clothing brand in 2023 called Not Dead Apparel, selling caps, t-shirts, jumpers and bags with slogans embroidered on them with her 'very dry' sense of humor – such as 'Tired Girl’s Club', 'Live. Laugh. Lie Down.' and 'Wish you weren’t here'.
Amy said: "There are so many hard pills to swallow with this illness, but I think for me its 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."
The mom-of-one has set up a GoFundMe page to help pay for her medical bills, while all profits made from her clothing brand will also go towards the surgery.
Topics: Fashion, Health, Mental Health, Life, UK News
Joe Yates