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A former bodybuilder says she is desperate to take back control of her life – as chronic illness continues to leave her bedbound and unable to walk.
Melody Wakelin, from Ashford, was riding high in 2017, having qualified as a personal trainer and achieving second place in a major fitness competition after shedding 16 stone.
However, within weeks she saw her world slowly start to fall apart, as she suffered with symptoms such as severe brain fog and muscle spasms.
Melody says she used to be an active, hands-on parent to her two children but now she has been reduced to “trying to be a mother from the sofa”.
Speaking to KentOnline this week, the 42-year-old says she started “getting really sick” and “spent a long time going to my GP”.
Melody says her illness, which is not believed to be linked to her previous dramatic weight loss, has “ruined my life”.
“I’m bed-bound, so I can’t take my kids to school, or work as a personal trainer or barber,” she said.
“It’s had such an impact on me, my husband and my kids. I can’t even go for a walk or leave my house by myself.”
Realising something was majorly wrong – having counted as many as 50 different symptoms over the past six years – Melody and her partner Jack pushed for intervention, both on the NHS and privately.
However, despite multiple A&E trips and “hundreds” of doctor's appointments, any hopes of getting to the root of the issue always turned out to be false dawns.
The mum-of-two had previously shed 16 stone over five years to achieve her fitness goals – having battled with both anorexia and obesity in her youth.
Given her current bed-bound status, some of the weight she lost has returned. Now both she and Jack believe doctors are choosing to hold her size against her – despite the fact this has been directly influenced by her illness.
“I’ve been told there's nothing wrong with me and I'm just imagining things,” she said.
“I’ve spent days and days just lying on the sofa because I’m unable to do anything. My heart rate can go insane while I’m just sitting still – to the point I’ve had to call 999.
“I’ve been told I’m trying to manipulate being given medication. I’ve had to change GPs because the support just hasn’t been there.
“Some people have said it’s just pinched nerves, others have said it’s just anxiety – but here I am with a neck brace on trying to make sure I don’t become paralysed.
“I’m unable to be active so I’ve gained all the weight back. The only time I leave my house is to go to doctor’s appointments. I’ve become a prisoner in my own house.”
After years of suffering, Melody was finally able to get a diagnosis in September thanks to medical experts in Barcelona. They said she had atlantoaxial instability (with borderline cervical instability) and Occult Tethered Cord Syndrome (OTCS), which is likely to be a genetic issue from birth.
Atlantoaxial instability (AAI) is where the atlas bone, which sits between the base of your skull and 1st cervical vertebrae, is unstable and can dislocate.
OTCS is where the base of the spinal cord tethers itself to the other parts of the spinal column, crushing and disturbing nerves just like AAI, causing problems with neurological function in the legs and with both bowel and urinary function.
Both conditions tend to be found together – and have the unwanted symptom of crushing and disturbing nerves in a way which could see her become paralysed.
Melody was also born with a lifelong condition called Ehlers-Danlos Syndrome, a genetic connective tissue disorder, which can see joints become lax and allows bones to either dislocate or subluxate (partially dislocate).
Her two sons were five and seven years old when her symptoms first started to appear six years ago.
And Melody admits her youngest child now cannot remember a time when she wasn’t chronically ill.
Through tears, she says all she wants is to be able to keep up with her kids “while they’re still young enough to want to”.
“I was quite an active, hands-on parent – we did lots of things together before I got ill,” explained Melody.
“I’ve gone from taking them to school, to the beach, to events and all kinds of things to desperately wanting just to be able to drop them off at school.
“I’m trying to be a mother from my sofa, that’s what upsets me the most – I always wanted to be a mother and it’s been taken away from me.”
As for future plans, the family are trying to raise more than £100,000 for treatment back in Barcelona, as they claim the NHS doesn’t offer the exact treatment required to tackle the issue.
Multiple surgeries would be required, with the family launching a GoFundMe to kickstart efforts.
Talking to KentOnline back in 2017 in an article celebrating her achievements, Melody spoke of her desire to move into the business world as she finally managed to find peace with her body image.
She said: “Over the next few months I plan on opening my own fitness business and doing coaching, personal trainer work and group classes in village halls, aimed for women and mothers to help them keep fit and healthy.”
For now, though, Melody couldn’t be any further from her dream.