Living with ME

Living with ME

Devoted daughter Lyn Burton says her mum is the most important person in her life and she’s always ‘in the forefront’ of her mind.

Lyn would love to be able to be more of a hands-on carer for her mum, Janet (82) but the only support she can give her is emotional. That’s because Lyn (54) has spent the past 14 years in bed suffering from severe myalgic encephalopathy - ME - while her mum battles to cope with Alzheimer’s and multiple sclerosis in the next room.

Lyn manages to use a wheelchair a couple of times a day to leave her bedroom to check on her mum’s condition but she’s almost always bed-bound due to extreme tiredness and other health problems.

Janet and Lyn, who live in a village in Lincolnshire, rely on a constant stream of carers day and night to look after their needs, but Lyn wishes with all her heart that life was different.

‘The most important thing is that Mum is here with me,’ says Lyn. ‘I know she’s well-cared for by all her carers and I can give moral support, which is all I’m well enough to do.’

Lyn was a young woman of 34 and at the top of her career as manager of a day nursery in Leeds when she suddenly started feeling ill. She believes that stress played a part in the development of ME but initially doctors thought her dizziness was caused by inner ear problems. Fatigue, severe joint pain and a diagnosis of Sjogren’s syndrome -inflammation of the glands which produce tears and saliva - eventually meant that Lyn had to stop work.

‘I fully expected to recover but sadly, that was not to be,’ says Lyn. She gave up her job and bought a small house near her parents. When her father died following a stroke in 2000, she realised she would need to give more support to her mum, who has had multiple sclerosis for 45 years and has since developed dementia. ‘At first I was able to get around on a scooter and even go shopping, but in recent years my condition has got much worse and I can do very little for myself, let alone for mum,’ says Lyn. ‘I probably leave the house four times a year, if that.’

During the long hours in bed Lyn lets her mind wander to how her life might have been, particularly with relationships and children. ‘I so much wish I could have married and had children,’ says Lyn. ‘Missing out on a normal life is a great source of regret for me.’

Daily life now revolves around the carers who come and go day and night providing support for Lyn and Janet. Lyn’s nighttime carer gets her breakfast before she leaves at 7am and her first daytime carer arrives at 8am to shower her, wash her hair and help with personal care.

Despite the fact that Lyn is in bed virtually all the time, she makes sure she gets dressed and wears make-up every day and she loves choosing jewellery from mail order catalogues. ‘I try to make myself look presentable, even though I haven’t the strength to go out,’ she says. Lyn’s days are spent in bed with the blinds closed as bright light hurts her eyes. She sleeps every afternoon through sheer exhaustion and she’s lost count of the people over the years who haven’t believed she was genuinely ill. ‘All I can say to anyone who doesn’t believe ME exists is that they should try to live my life. It’s horrible and I wouldn’t wish it on anyone.

‘My dream is to be well enough to care for mum and to look after myself again one day,’ says Lyn. ‘I have to believe that might be possible.’

It is estimated that 250,000 people in the UK are affected by ME or chronic fatigue syndrome. People of all ages can be affected. For help and support, call the ME Society helpline on 0844 576 5326, For The British Sjogren’s Syndrome Association, call 0121 4781133,