‘It’s far more severe than being tired ... on some mornings my husband couldn’t wake me up’
Mum-of-two Kathy, 58, on life in lockdown with ME
IT’S only a small street where Kathy Simms lives, and the sunny weather seemed perfect for a short walk to keep her occupied during lockdown.
But soon afterwards the 58-year-old, who has myalgic encephalomyelitis, realised she had attempted too much.
“I stopped when I felt tired, but often when you feel tired it’s a sign you’ve already done too much,” she says. “I thought I was having a heart attack. My chest pains were running down my arm and I called an ambulance.”
Mum-of-two Kathy, of Crewe, was diagnosed with ME in September 2019, and has lived ‘in lockdown’ ever since. She is one of more than 4,000 people in Cheshire living with the neurological condition, which causes chronic fatigue and pain.
She added: “The only treatment is knowing how to pace yourself and making sure to rest after doing something.
“If I don’t rest, I get intense pains all over – I can’t manage more than about half an hour of conversation because it’s working my brain.”
Kathy, is a business manager at The Willows Primary School in Penkhull, Stoke-on-trent, but has worked from home since her diagnosis.
She has recently been approved for medical retirement due to the severity of her condition.
She said: “I love my job, it’s so rewarding and the school has really supported me in working from home since September, but I’m struggling to do the job now. It’s really sad as I really enjoyed it and felt I could make a difference.
“Giving up work has been the most difficult decision, I feel I’m too young to retire and still have a lot to give, I just don’t have the energy or the physical or cognitive ability to work now.”
May is ME Awareness Month, and Kathy wants to let people know how the invisible disability has affected her everyday life, leaving her practically housebound for more than six months.
ME affects people’s bodies and brains from recovering properly after any physical or mental activity, which can often cause pain and exhaustion.
Kathy said:
“I’d suffered for about two years with various undiagnosed illnesses and fatigue was becoming a real problem. I was struggling to drive to and from work and was having to pin my eyes open.
“Some days my husband couldn’t wake me up in the morning – it’s far more severe than just being tired.”
Throughout the coronavirus pandemic, Kathy has been shielding, despite not being on the vulnerable list.
She said: “I know my immune system isn’t good, so I have self-isolated. We already had our shopping delivered as I struggled to go to the shops. It’s difficult to get people to understand that you’re ill, because I don’t look unwell.”
While staying safe at home, Kathy has been finding ways to stay positive and keep in touch with her family. She said: “I have a three-year-old grandson who will read to me on video chat.
“I also like to potter in the greenhouse and keep in touch with friends and family. I just have to limit the amount of time I spend doing it. I like to stay positive and find something different to do each day so that I’m not bored.”