I’ve been trapped in bed with my skull detached from my spine ever since my daughter came home from nursery with a fever
A MUM has been trapped in bed with a condition that means her skull isn’t securely attached to her spine for almost eight years.
Amy Ironside Wood, 38, first fell ill in 2017 after her daughter Willow came home from nursery with glandular fever.
The now-10-year-old recovered within a week, but Amy’s symptoms have never gone away.
The former fashion buyer, from Nottingham, said she initially felt “weak and faint”, and had to crawl to and from her little girl’s bedroom if she woke up during the night.
“I felt a level of fatigue that I could never have imagined as a healthy person,” Amy said.
“At night, I would feel like I was passing out repeatedly.
“My heart would race when I would roll over in bed as if I’d just run up a flight of stairs.
“And 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 diagnosed her with myalgic encephalomyelitis (ME), of which glandular fever is a known trigger.
But Amy didn’t feel like that was the full story.
“I spent every waking minute researching my condition,” she said.
“I thought if I could work out what was actually happening in my body then maybe I could find a way to treat it.”
Amy tried “every diet, supplement and medication” she could before stumbling across a TED Talk by American filmmaker Jennifer Brea, who claimed she had put her ME into remission through neurosurgery.
“I cannot explain the excitement I felt when I thought that there was a cure – even if it meant going through major surgery,” she said.
“I would have done anything at that point to get my life back.”
Amy, who shares Willow with her husband, Nik, 42, sought help from a specialist in the field in Barcelona, Spain.
In 2022, they diagnosed her with craniocervical instability (CCI) – a rare medical condition where the skull is not securely attached to the spine.
It was also suspected that Amy’s spinal cord was tethered – where the spinal cord is attached to the tissue around the spinal canal, meaning it cannot move freely – which was confirmed by a specialist in New York, United States, in October 2024.
The conditions mean Amy’s energy levels fluctuate on a daily basis.
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
Amy Ironside Wood
There are days where she cannot get out of bed, except to use the toilet, and others where she manages one or two hours of low-level function.
“It’s very difficult for me to stand for longer than a few minutes,” she said.
“I can’t take my daughter to the park or for days out, and I can’t be in restaurants or cafes because the ambient noise worsens my symptoms a lot.”
Treatments are available, but they come at a cost.
The first is a procedure that takes stem cells from bone marrow and injects them through the throat and into the ligaments at the back of the skull.
The second is a “brutal” neurosurgery using hardware to fuse the skull and the cervical spine.
Amy said the latter would only be available to her in Spain at a cost of £80,000 or America for upwards of £200,000.
She added she must also have an operation to release her tethered spinal cord, which could cost between £17,000 and £20,000.
‘What fresh hell is this?’
To help with the fees but being “uncomfortable asking for donations”, Amy launched her own clothing brand, Not Dead Apparel, in 2023.
The business sells jumpers, T-shirts, caps and bags embroidered with slogans showing her “very dry sense of humour”.
This includes – ‘What fresh hell is this’, ‘Tired Girl’s Club’, ‘Live, Laugh, Lie Down’, and ‘Wish you weren’t here’.
“I do all of the design, admin and customer service aspects and then I outsource the embroidery, since my body just isn’t in a place to do anything physical right now,” Amy said.
“I’d say humour has been the most important tool to get me through all of this and the designs often resonate with people going through all kinds of struggles.”
While it was only her family and friends who purchased her wares at first, the business boomed in March 2024 after an influencer shared one of her hats on Instagram.
“The response has been wonderful. It’s been a joyous reminder of the kindness of strangers,” she added.
Amy recently set up an online store where all of the profits from her sales go directly towards her medical treatment, as well as any funds she raises through her GoFundMe page, which has more than £8,000 in donations so far.
Looking ahead, she is hoping to get her first surgery, the tethered spinal cord release, under way this year.
“There are so many hard pills to swallow with this illness, but I think for me its the social isolation,” Amy said.
“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.
“I really don’t want to get to the 10-year mark.
“To have your life put on hold for a decade is a tough thing to accept.”
What is myalgic encephalomyelitis
MYALGIC encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition.
The four most common symptoms are:
- Feeling extremely tired all the time (fatigue)
- Sleep problems, including insomnia, sleeping too much, feeling like you haven’t slept properly and feeling stiff when you wake up
- Problems with thinking, concentration and memory (brain fog)
- Symptoms getting worse after physical or mental activity
But some people also experience pain, flu-like symptoms like a temperature and aching joints or muscles, and headaches.
There is no specific test for ME, so it is diagnosed based on symptoms and ruling out other conditions.
It also has no single cause. Some people develop ME following an infection, like glandular fever, while others can identify a period of stress leading up to the start of their illness.
Treatment usually involves energy management, cognitive behavioural therapy, and medicine to control certain symptoms.
Source: NHS