By Andy Hirst, Special Correspondent
Caroline Manson used to love going out dancing, eating and socialising … but her life changed the day she woke up with no feeling in her legs.
The 43-year-old mum-of-three from Kirkheaton was suddenly struck down with a mystery condition which the doctors eventually diagnosed as Myalgic Encephalomyelitis – better known simply as ME.
ME or chronic fatigue syndrome affects around a quarter-of-a-million people in the UK and about 17 million worldwide and the main symptoms are extreme lack of energy to function and generally feeling ill. It is now thought it can be triggered by illnesses and viruses including Covid-19.
Caroline had been fit and well right up to 2018 and worked full-time as a co-ordinator for a home care company in Huddersfield.
“I loved my job and was so happy,” she said.
But all that changed one morning in mid-2018 when Caroline woke up with no feeling in her legs beneath her knees.
She was taken to Huddersfield Royal Infirmary but all her blood tests came back normal and CT and MRI scans found nothing. Eventually, a neurologist diagnosed ME based on Caroline’s symptoms.
She spent six weeks in hospital and then a further three months at a rehabilitation centre in Netherton.
The condition has left her wracked with pain down her right side along with headaches. It’s so bad she now spends 60% of her time in bed – and even then she can’t get comfortable.
On good days Caroline can get up and perhaps do the washing up and cook a meal, but she’s really unsteady on her feet and relies on holding onto the walls, furniture and doors to get around.
The only thing Caroline can think could have sparked the onset of ME had been five months before when she woke up feeling unwell and nauseous with a bad headache and pins and needles in her right arm. Doctors at HRI wondered if she had suffered a bleed to the brain and they did an MRI and a lumbar puncture but nothing obvious showed up.
“In hindsight I don’t think I’d ever felt right since then,” said Caroline. “Now I just don’t know what the future holds. I would love to get better and be back to my old self but it’s so hard to look past the here and now. I rarely go out of the house and when I do I use a wheelchair.
“I hate people staring at me. I shouldn’t be in a wheelchair, I should be living life.”
Caroline’s symptoms are extreme tiredness, memory loss to the point she sometimes struggles to put a sentence together, bladder problems, mobility issues caused by weakness to her limbs, headaches and poor concentration.
She is on a lot of medication to try to manage her symptoms and has just been diagnosed with sigmoid colitis, a condition which means her colon is inflamed leading to excruciating pain.
“It’s even worse than childbirth,” said Caroline. “I’m on a lot of pain relief. Once you get one health problem others seem to manifest themselves.”
Caroline says her family have been a wonderful support – husband Richard who has had to wash and dress her, 19-year-old daughter Bethany and sons Christian, 23 – a chef at Bagden Hall Hotel in Scissett – and 16-year-old Eoin.
She was also keen to praise her own parents, Elaine and David Simpson from Kirkheaton and Richard’s parents, Pat and Glynn Manson, who live in Dalton.
“They have been absolute stars,” she said. “If there has been anything I’ve needed they’ve been there for me in a heartbeat.”
When Caroline was struggling in the rehabilitation centre her sister, Louisa Simpson, would feed her and comb her hair and her other sister and brothers – Laura, Michael and Chris – have also been supportive.
Caroline has had help and advice from Kirklees and Calderdale Independent ME Support Group which was formed by ME sufferers and their carers to provide support, information and understanding for people learning to live with the condition. For more information go to https://kimesg.co.uk/
Fiona Livings from the support group says around 25% of people with ME are classed as severe or very severe and are mainly confined to bed, including children.
She added: “If people with ME do physical or mental activity they can then suffer from Post Exertional Malaise which is a key symptom that differentiates ME from other conditions that involve chronic fatigue such as fibromyalgia. It’s a kind of payback that makes the symptoms even worse.”
According to the NHS, ME is a long-term condition causing persistent fatigue that doesn’t go away with sleep or rest and has a big impact on everyday life. It most commonly affects the nervous and immune systems. Sometimes it’s diagnosed as post viral fatigue syndrome.
It’s not known what causes ME but suggested triggers include Covid-19, viral infections such as glandular fever, bacterial infections such as pneumonia, problems with the immune system, a hormone imbalance, mental health problems such as stress and emotional trauma and perhaps ME is genetic as it seems to be more common in some families.
In many ways ME is a mysterious condition as there is no test to diagnose it, more a case of GPs ruling out other conditions that could be causing symptoms which include:
Lack of energy and general fatigue
Feeling dizzy or sick
Muscle or joint pain
Problems thinking, remembering or concentrating
Fast or irregular heartbeats
* Written by former Huddersfield Examiner Head of Content ANDY HIRST who now runs his own Huddersfield-based agency AH! PR specialising in press releases, blogging and copywriting for business in Yorkshire and across the UK.