Chelsea Shields and her husband Connor at their wedding (Picture: Chelsea Shields/SWNS)
It was just five days after Chelsea Shields had the wedding of her dreams that things went wrong.
‘I woke up unable to see out of my right eye — it was complete darkness’ says the 28-year-old from Doncaster. ‘I was panicking. I thought, “What if I’m going blind? What if I’m not going to be able to see my children growing up?”‘
But her eyesight was just the start of a period of rapidly-declining health since tying the knot with husband Connor, 34, in August; a whole host of debilitating symptoms she now knows were caused by functional neurological disorder (FND).
‘I’ve always had issues with muscle weakness and pains. I’ve had back-and-forth visits to GPs and A&E for about 10 years,’ Chelsea explains. ‘But the worst symptoms I’ve experienced came days after my wedding.’
The morning she realised she couldn’t see out of one eye, she was rushed to hospital, where doctors said they thought she had a viral infection and sent her home.
The next day however, things only got worse.
Chelsea Shields in hospital before her diagnosis (Picture: Chelsea Shields/SWNS)
‘I woke up and the other eye had started going blurry,’ Chelsea recalls. ‘I went back to hospital for more tests and scans, and there was no field of vision in the right eye at all, but nobody knew what it was.’
With doctors suspecting MS (Multiple Sclerosis), the mum-of-three was given powerful steroids while she waited for urgent scans – but by then, she was barely able to move.
‘I had a constant dull headache and I couldn’t cope with it,’ she says. ‘My left eye got significantly worse – and then I was in the kitchen making lunch for my children when I got hit with a sudden thunderclap headache.’
Chelsea Shields and her husband Connor at their wedding, five days before she partially lost her sight (Picture: Chelsea Shields/SWNS)
Chelsea ‘dropped to the floor’, getting her five-year-old to pass her the phone so she could call Connor for help, ‘crying out in pain’ as she tried to dial.
By the time the ambulance arrived to take her to hospital, she couldn’t even walk up to it without falling over.
‘I lost the ability to go to the toilet as well, so at 28-years-old, I had to be catheterised,’ says Chelsea. ‘I couldn’t get out of bed, because I’d been put down as a fall risk. I could just feel my whole body starting to give up on me.’
Functional neurological disorder (FND)
The NHS says it’s helpful to think of the brain like a computer, in this case. In someone who has FND, there’s no damage to the hardware, or structure, of the brain. It’s the software, or program running on the computer, that isn’t working properly.
Possible symptoms
- Limb weakness which causes problems walking, heaviness on one side, dropping things, and feeling like your limb isn’t part of you
- Seizures where you experience uncontrolled shaking, suddenly going motionless and unresponsive, or staring without responding to surroundings
- Tremors in the arms and legs
- Dystonia – a muscle spasm where a part of your body becomes stuck in an unusual position
- Gait disorder, where you have a dragging leg, feel unsteady when walking, or make excessive movements when walking
- Facial spasms and tics which look similar to Tourette’s, and jerks and twitches
- Drop attacks where you fall to the ground suddenly while conscious
- Numbness and pins and needles
- Problems with your memory and concentration
- Speech and swallowing difficulties
- Persistent postural perceptual dizziness
- Blurred vision, double vision, sensitivity to light, reduced vision
- Dissociation
Other symptoms include: chronic pain, fatigue, insomnia or hypersomnia, migraines, irritable bowel syndrome, anxiety, panic attacks, depression, PTSD, chronic urinary retention, dysfunctional breathing.
Treatment
Rehabilitation therapy is used to improve the quality of life of FND sufferers, in an attempt to retrain the brain. Some many benefit from this, while others may continue to have symptoms despite treatment.
Source: NHS
It was tough to cope, but after four long weeks without an answer as to what was going on, doctors finally gave her a diagnosis: functional neurological disorder.
This complex condition affects how the brain sends and receives signals to the body, causing a range of symptoms from muscle spasms to memory issues.
Living with Functional neurological disorder (FND)
Chelsea explains: ‘Before I was diagnosed, I’d never heard of FND, but it’s actually more common than people would think.
‘It can be very unpredictable, so it can mean anything from seizures to paralysis, which makes it even harder to get the right help.’
FND can be difficult to diagnose, and has no single ‘cure’, with treatment focusing more on managing symptoms through medication and physiotherapy.
Chelsea spent four weeks waiting for a diagnosis (Picture: Chelsea Shields/SWNS)
Despite its severity though, Chelsea says the disorder is often dismissed or ‘not taken seriously’.
‘The main symptom for me is brain fog, which is quite bad when you have young children,’ she adds.
‘I have a lot of weakness in my legs, so 99% of the time I walk with a stick or crutches. There are times when I can’t feel my legs and I can’t physically walk.
‘I take about 20 tablets per day and suffer with constant pain. I’ve gone from a fully functional mum of three to feeling like I’m a 90-year-old. Three months ago, I never thought this would be my life.’
Chelsea is hoping to raise awareness about her condition which isn’t easy to treat (Picture: Chelsea Shields/SWNS)
Determined to fight back, Chelsea has launched a Facebook page to vlog her journey and shine a light on FND – hoping her story will resonate with others battling the same illness.
She plans to regularly post videos documenting her daily reality with the condition, between the rigorous medication routines and how it impacts her mental health.
‘I can’t work, so I’m putting all my time into raising awareness,’ Chelsea adds.
‘I want to share everything, because I know it will help people.’
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