ME the illness: “Mourning the life we’ve lost”
The Messenger family have translated the article about them Cyflwr ME: ‘Galaru am fywyd ry’n wedi’i golli‘ posted on Cymru Fyw.
“The harmful effect of ME on patients and on families is terrible”, says a father from Carmarthen who currently is walking 5 miles each morning at the break of dawn in order to raise awareness and try to get better medical treatment.
Rob Messenger’s son, Cerith, now age 30 has been living with severe ME since age 11 – he had to leave secondary school early in Year 7 and he has had to spend long periods of his life in bed in a dark room.
Currently, after his condition worsened, he is unable to walk, read, watch television or tolerate light and sound.
The least effort, physical or cognitive, can lead to post-exertional malaise – one of the chief symptoms of ME.
Some two years after Cerith had his diagnosis, his sister Eleri found out that she also had the illness.
“Dad carried me to bed every night”
“The whole thing has been awfully difficult for us and all the family”, said Eleri when speaking to Cymru Fyw.
“I was 15 at the time – looking forward to my GCSE year. I’d suffered a number of infections but had kept going back over several years and in the end after one of them I didn’t recover, I just kept getting worse.
“I was like Cerith, very active, I was very happy in school, and looking forward to being part of the latest school musical show and moving up into Sixth Form, I’d been abroad on school trips to Italy and Ireland and had completed the Duke of Edinburgh Award expedition.
“But at the start of 2006 I became very ill. To start with I could walk a little with support to get from the settee to the toilet. But gradually I lost the ability to stand at all.
Dad had to carry me up to bed each night. There were times when I couldn’t hold a cup and had to be fed.
“I was in constant pain, sometimes I couldn’t speak and I had cognitive and sensory problems.
“From that point on it was impossible for me continue my education, which was a huge loss to me.
“I had to have a special bed, a wheelchair and a stair lift in the house. My friends were really great, but I couldn’t help but grieve for the life that I had lost. I longed to be able to socialise and to go to university.
“During these years, whilst Dad was at work, Mam was looking after Cerith and me at home – she was always trying to keep things as normal as she could in a completely abnormal situation, keeping us up with things that were happening, special days and celebrations, and helping us stay in touch with the world outside – and helping us to maintain hope.
“Over the years I gradually began to improve a little so that I could do more within what I would call my ‘energy envelope’ in order to avoid post-exertional malaise (PEM).
PEM means that every symptom gets worse – the pain, the heaviness and weakness, difficulties sleeping, standing, thinking and communication.”
“I still have to manage the illness every day which means a lot of planning beforehand for any activity and regular rest.”
“Shadow of the person I should be”
Eleri has now set up a business from home selling her own cards and during last year she married.
“It’s so important to raise awareness about the severity of the condition”, she added.
“It’s not always obvious from looking at someone how ill they are.
“I’m so fortunate to have a supportive husband who can work from home and so can help me during the day with things like preparing food and cleaning.
“I’m going to Tafwyl (https://tafwyl.org/) with a stall next week – which has involved a lot of planning.
My husband, family and friends are coming to help and I’ve had to book a hotel nearby in order to be close enough that I can go back and forth from the stall in my wheelchair.
“Despite everything we had a great wedding day. We had so much support from family and friends to make it possible – but the great sadness, of course, was that Cerith couldn’t be there.
“With regards to the future, people with ME have to completely rethink their aspirations – it’s hard to imagine how I could have children unless I improve significantly, for example.
People (with ME) often say that they feel like a shadow or a quarter of the person they would have been.”
Rob Messenger was head of department in a school in Tenby but he had to change jobs, go part-time and then retire early to help look after the children. He and his wife have only been away on holiday once since 2004.
Since the start of June he has been walking to the top of Paxton Tower hill at the break of dawn each day.
On the 100th day he will have walked 500 miles and climbed twice the height of Everest but the goal is to raise money for two charities which fund biomedical research into ME, and another which supports patients in Wales.
He is also encouraging sufferers of ME or Long Covid in Wales to take part in a genetics study – the largest ever in the world on ME
Wales is a complete desert
“It’s important to recognise how resilient and determined people have to be to cope with this illness which is so life-changing”, he said.
“Cerith, for example has been so severely ill that he has had to be fed through a tube and also he’s had to spend time in a hospice.
“He was a boy full of life, always kicking a ball and when very young reading books like Harry Potter, and he was very musical.
“But when he got ME he had to go back to reading Mr Men, one page at a time, that was the severity of the situation and how ill he was.
“Whilst there have been some specialist centres in England, Wales has been a complete desert in terms of services for patients with ME. There is no specialist consultant for the GP to turn to for advice”, added Mr Messenger.
“How can this be right – given how much impact the illness has on patients?”
“We as Cerith’s parents have to do the bulk of the coordinating between the various health workers who respond to his different needs because there’s no specialist who can take on this roll.”
“There’s a need for expertise that meets the requirements of the NICE 2021 guidelines on ME – guidance that identifies it as a chronic , complex , multi-system illness”.
In response a spokesperson on behalf of the Welsh Government said: “We understand the effect ME can have on the daily life of people and their families and we have extended the Adferiad (Recovery) programme to include people with ME and other conditions with similar symptoms.
“Our goal is to ensure that people who live with long term conditions have fair access to services and that the services improve the mental and physical health of people who live with ME.”
“Sun rise for people with ME”
Cerith and Eleri are amongst 13,000 sufferers in Wales but it’s difficult to know for sure the number because there has been insufficient research in the field and because the illness hasn’t been taken seriously enough, said Mr Messenger.
“ My hope is that through my journey I can raise more awareness. I start at an early hour each morning because that’s the convenient time – it’s impossible later in the day because of my caring responsibilities.
“During the walks I’ll be sharing some discussions with key people and posting them on-line.
“I’m enjoying the walks but I know I need to stay fit for the future – I’m 68 and I need to keep going for the family.
“Through seeing the breaking of the dawn each morning from the top of Paxton Tower hill, my greatest hope is that the sun will rise for patients with ME.”[1]
[1] A little difficult to translate this last sentence neatly. In Welsh it makes reference to a well known poetic saying, “daw eto haul ar fryn” i.e. “There will be sunshine on the hill / mountain again”….things will get better.
