‘I wish I could give people a little bit of the pain’ - Woman on lack of support for those with long-term illnesses
PUBLISHED: 12:00 23 January 2019 | UPDATED: 13:04 23 January 2019
For Michelle Randall, even getting out of bed can be too much to handle on some days.
“I only got dressed today because I knew you were coming round,” she said as we sat down with a cup of tea.
Michelle has a myriad of health conditions - almost too many to list. But the ones which keep her confined to her Horstead home are her poor mental health, fibromyalgia and ME, and complications from a mesh implant fitted in 2005.
“The last four or five years have been really bad,” said Michelle, a mother of two and a grandmother. “I first had a breakdown when I was 22, I’m now 51 so we’re talking almost 30 years of battling this.”
Although she’d always struggled with her mental health, Michelle had not always been so acutely unwell. She used to go on daily walks, practice yoga and pilates, and was able to drive herself places.
“But now I’ve been shut in this house for over two years, bed ridden lots of the time,” she said.
Michelle’s isolation was only improved by a supportive family, who helped her cope. But she said she wanted to highlight how the bureaucracy of dealing with multiple medical conditions could become almost worse than the illnesses themselves.
“Back when I was first ill, in mental health there was so much help. People used to have regular CPNs (community psychiatric nurses). But now I’m having to pay for private therapy out of my benefits.”
Michelle said she had been referred to mental health services four times, but most recently a letter sent in December told her to go over materials given to her two years ago instead of offering more help.
“I’ve been let down so many times,” she said. “So many meetings where they don’t turn up, I think people with long-term conditions should stay on the books.”
While for her physical health she said many simply did not understand the issues at hand.
She said when speaking to a GP about her TVT mesh implant, they did not understand the issues.
“Everyone needs to be educated on it,” she said. Its use has been banned in Scotland and a Canadian study published this month showed women with complications from the implants were more at risk of depression.
Michelle has had the first of two operations to have her implant removed - joining more than 2,500 other women who had already had the procedure.
But she was forced to seek help in London - she went to the capital six times last year for treatment.
And while the journey might be easily for some, Michelle is unable to travel alone and can sometimes not even sit due to nerve damage and bowel problems.
“They think it’s all in your mind but I saw a lady who works with ME in Yarmouth, she said my body was working at around 20pc and that was two years ago,” she said.
While another doctor told her they did not believe any of her symptoms were related to her mesh implant.
“But the mesh can cause fibromyalgia and ME,” she said.
“I gave my mental health worker at the time a leaflet on mesh and he didn’t want to read it, and he told me you don’t get pain with ME.”
Combined with benefit cuts, the loss of her father, and her mother being diagnosed with cancer, Michelle said: “I’m just going round in circles, my mental health affects my physical health and round it goes.”
And the impact of struggling with her health had impacted her in other ways.
“I don’t have many friends left,” she said. “The friends I’ve got I don’t want to depress them. I know as soon as I wake up what my pain levels are going to be like. Most days are rubbish, I maybe get one good day a month and if I over exert myself I will be in bed for a week. It’s like you’re just banging your head on a brick wall. There’s not any help available.”
Michelle said the only thing stopping her taking her own life was her children and granddaughter.
“I’ve been so close to taking overdoses,” she said.
Michelle said she was speaking out in the hope it highlighted the complex system those with serious, long-term conditions had to tackle.
“I wish I could just give people a little bit of the pain for a day, so they could see how it feels,” she said. “What I want to get out there is it should be more like the old days.”