‘Life is terrible’ for mum with rare illness that has trapped her at home for a year
JANINE SAYS MEDICS DO NOT UNDERSTAND CONDITION
A 37-YEAR-OLD mum-of-two says she hasn’t left her house for a year due to an illness which has consumed her life.
But she claims that most NHS staff don’t have any idea what it is – and that her life is in danger because of medical professionals’ lack of urgency when her health is in crisis.
Janine Merryweather was diagnosed with the rare Addison’s disease – which affects just 9,000 people in the UK – in 2013, around eight years after first experiencing symptoms.
Once an “incredibly social” person who “jumped at every opportunity”, she says she is now a shell of her former self and a “hermit” who is scared to be seen in public, having lost her home care business and become estranged from friends.
She said: “I’m giving up. This is a life-threatening condition. If they’re not going to treat it and I’ve not got a quality of life then what is the point for me moving forward?
“My GP is great but 111 receivers and the district nurses are not there. You rely on the NHS. I don’t know what more I can do. There’s just literally no awareness whatsoever. Everyone’s oblivious. It’s just pushed aside.”
Miss Merryweather was first diagnosed with a tumour on her pituitary gland in 2005, when she was 18, after suffering from worsening symptoms such as migraines and fainting.
She says doctors initially brushed her off and told her the symptoms were due to the stress of a break-up and newborn baby – and it was only after she collapsed that a scan revealed the extent of the problem.
The tumour was benign but too dangerous to remove, so surgeons opted to leave it and instead sent her away with medication to help her symptoms.
But over the next decade, she continued to suffer progressively worse symptoms – including waking up in the morning and feeling like she “hadn’t been to sleep”.
She continued to collapse. One time she was found on her kitchen floor by a passer-by. But doctors thought she had just been drinking, and she says she was threatened with having her children taken away.
A subsequent blood test finally revealed Addison’s disease and secher ondary adrenal insufficiency, caused by damage to the pituitary gland, which affects the body’s production of vital steroids such as cortisol and causes symptoms similar to a stroke.
Addison’s is treated with multiple daily steroid injections. But stress or other physical illness, such as a cold, can cause levels to drop significantly and lead to an “adrenal crisis”.
The NHS website says “an adrenal crisis is a medical emergency. If left untreated, it can be fatal”. Unlike an anaphylactic shock, in which a suffer can jab themselves with an Epipen, Addison’s requires a lengthy injection process which can take more than five minutes.
When Janine’s levels are low, she will often be drowsy, dizzy, confused and unable to do it herself.
As a result, she was advised to ring 999 or contact her local NHS service for emergency injections, and told that she’d be fast-tracked as an urgent priority.
But in 2017, she went to the Platform One Walk-in Centre with symptoms of a crisis, having rung up beforehand to let them know she was coming and been told by a nurse that she would be seen immediately.
But when she got there, the receptionist told her to sit and wait twice before she eventually collapsed.
She was taken to hospital. The company that ran the walk-in centre apologised for the mistake.
Seven years on, she says that she has almost no quality of life – made all the worse when her condition is still not understood, despite her previous issues, by NHS 111 staff and nurses.
On March 29, feeling unwell and fearing a crisis, she rang 111 and a triage doctor was sent out to her at around midday.
He told her another doctor would come to see her within two hours. But this never happened. She began to feel worse and worse as the day went on and contacted her carer, who told her that she had already requested a district nurse to visit but been told by the nurse that her request was not being classed as urgent.
The carer contacted the nurses again, but still they told her it was classed as non-urgent, so an ambulance was called at around 8pm.
At 3am, Janine woke up surrounded by paramedics.
She assumes she had been “out of it” for hours and the ambulance had taken around seven hours to get to her. Luckily, she survived. Janine called for change seven years ago when she spoke to the Post, saying she feared a similar situation happening again.
It has – repeatedly – and she says awareness is still “ridiculously low”. wrecked life is now “terrible”, she says, having developed diabetes and alopecia as a result of her illness and having suffered a spinal injury when she collapsed while ice skating last year. Carers visit four times per day to help her prepare meals and wash, and she had to give up her business in 2020 after catching sepsis. She avoids going outside because of her fear of becoming stressed and triggering a crisis, and avoids seeing people because she is worried they could pass on illness to her, which could also cause her cortisol levels to drop. “Life is terrible,” she said. “I’m not going to lie. I’m tired all the time. It has a massive impact on everything: memory, eating, isolation. I can’t even explain it. My whole life has changed. It’s like my whole identity has been stripped.” Find out more about Addison’s disease on the NHS website at nhs. uk/conditions/addisons-disease/
My whole life has changed. It’s like my whole identity has been stripped away Janine Merryweather