ANottingham mumhas been left bedridden for six years after catching what she thought was just a common cold from her baby daughter. Amy Ironside Wood, 37, contractedGlandular feverfrom her daughter Willow, with the virus causing an "autoimmune cascade" which left her having to lie down for 22 hours a day.
In addition to chronic fatigue, the ligaments holding her skull to her spine have been severely weakened and Amy now has to wear a neck brace whenever she stands up. The mum had just returned from a trip away with friends to celebrate her 31st birthday when she began to feel ill.
Willow, who was 18 months old at the time, had caught the bug caused by the Epstein-Barr virus at nursery but recovered after about a week, whereas Amy found herself rapidly getting worse. Shetold the Daily Mirror:"I just wasn’t getting any better and new symptoms were coming up.
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"I'd just thought I had a little cold. I didn't even have a fever." Within 10 days she was suffering severe fatigue, breathlessness, and a general weakness throughout her body, and in a matter of weeks she only had enough energy for light activity two hours a day, and has not got better in the years since.
She explained: "I literally went overnight from going to the gym three times a week to struggling to get out of bed. When Willow needed me in the night when she was little, I’d literally have to crawl across the landing because I was too weak to stand up.
"I was just like, what is happening?" It was her dad that suggested she might have Myalgic encephalomyelitis or chronic fatigue syndrome, commonly caused by Glandular fever. She went to her GP for months, where they tested to eliminate all over possibilities.
She said: "They have to rule everything out before they can consider ME, but there's no blood test, they just have to diagnose you on symptoms, anyway. When they’ve ticked all those boxes, they lump you in the ME basket."
Amy said: "That’s difficult because they know anything about it - and they freely admit that - and there’s no treatment, they tell you to go home and go to bed." The mum ran an independent business selling denim clothing through ASOS, and said she began a research journey which consumed much of her waking time.
She explained: "I was thinking what the **** am I going to do? I’m 31, I’ve got a little kid, I can’t just go to bed for the rest of my life." Last year the family had further complications when Amy's husband Nick, who had become the only source of income, was diagnosed with stage 3 melanoma.
Nick had had it before and was preparing to celebrate 10 years all clear when he found a lump near his ear under the skin. Doctors quickly removed it and he had a year's worth of immunotherapy treatment to destroy any rogue cells.
As Amy and Nick both suffered from fatigue, they had to reply on their parents to look after Willow. Nick also had to take months out of work which left them financially "ruined" without a steady income.
Amy said: "It was very trying last year. Getting hit from both sides, it was a slog."
In the meantime, Amy was able to find fellow ME patient Jen Brea during her research, and began following her journey onTwitter.
Like Amy, Jen had been diagnosed with ME but was also battling issues with her spine and eventually had major surgery, which put her ME into remission, suggesting the multi-systematic illness had a structural root cause.
She had been diagnosed with Craniocervical Instability and tethered cord syndrome and had two major operations to fix these issues. Jen set up a Facebook group that explored the issues linked with ME, and Amy realised her symptoms suggested she would need similar treatment.
In February 2022, Amy and Nick travelled to Barcelona to see a doctor who confirmed she had craniocervical instability and atlantoaxial instability. She said: "This basically means that my skull and cervical spine isn’t stable and this is in turn causing brain stem compression and widespread dysfunction."
Amy understands that the original virus caused an "autoimmune cascade" through her body, degrading her connective tissue. She continued: "This connective tissue damage has caused the ligaments that hold my skull in place to become lax, therefore my skull is shifting on my spine as opposed to being nicely stable up there," she said.
Her two options for treatment are fusion surgery or a specialist stem cell procedure, both of which have risks, and none of the treatments or assessments are available on theNHS.
Even if she could raise the funds, Amy explained travelling abroad is a nightmare. She said: "I have to go in a wheelchair and I have to wear a neck brace to try to stabilise my skull and my spine while I’m not laid down.
"I also have to book specialist equipment at the airport so they put me through. I need to find places to lie down but in airports often there isn’t so I have to just lie down on the floor.
"The problem is you also end up with really oversensitive senses when you’ve got ME, so sound and touch make your condition worse. Being in a bright, loud, busy environment, it makes me so ill. I have to take ear defenders, an eye mask, and I have to basically curl up in a corner on my own until I get on the flight."
She continued: "Then I get there and do the same the other side, I can’t talk to anybody because it exhausts me. I can’t do anything, it’s like moving a dead body.
"I have to be laid down on the floor, popped in a wheelchair, put on the aircraft, left alone and get off the other side." If Amy decides to have stem cell treatments she would need to travel to the USA, which would be a long-haul flight.
However, Amy is determined to get better for her husband and daughter, and feels like a "huge burden" on them, as well as her parents. When asked about her daughter, who is now eight years old, Amy said: "I will never get those years back. She will never be two, three, four, five again.
"I spent all those years laying on the sofa trying to get through the day. You spend every ounce of energy trying to get through the day rather than putting any enjoyment into her life, doing anything with her, making any memories.
"I don’t want her memories of me laying down and helpless. It minimises your personality, when you’re really exhausted you don’t even have the energy to be fun, to crack a joke, you just can’t be a****."
She continued: "When you have clinical levels of exhaustion, even though in my mind I have jokes to tell and I want to do impressions, want to mess around with her, I physically can’t do it because it makes me ill to expend that energy. I have to just minimise everything and do the essentials of what needs to be done and that can take a lot of joy out of everything."
However, she said Willow is very understanding and she can't hide anything from her. Amy explained: "I couldn’t hide the fact that Mummy can’t take you to the park, mummy’s got to lie down, I can’t go painting, I can’t take you swimming.
"I had to be open with her about what’s going on because there was just no way to hide it. The last couple of years she’s been amazing, she’s so understanding, she’ll tell people to be quiet around me and bring people drinks.
"It’s sad because I don’t want her to have to look after me, but now she is a bit older, she’s learned that not everything is about her. Sometimes it has to be about other people. She understands I'm not like anybody else."
She added: "It’s given her a different perspective on what’s important. I'll say we can’t afford holidays this year because Mummy needs treatment, we need to pay for medical bills.
"She’ll say things like 'your health is much more important than my happiness'. I think, 'don’t, I’ll cry'. She’s learning a good lesson from this, even though it’s one I never wanted her to learn."
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