How sharing her story is opening doors for mum Angela

Angela Milnes with her husband John and seven-year-old daughter Sylvia
Angela Milnes with her husband John and seven-year-old daughter Sylvia

Having a baby changes the lives of all couples, but Angela Milnes had no idea how different things would be after the birth of her daughter.

Before Sylvia was born, Angela worked as a teacher and had fertility treatment to help her have a much-wanted baby.

But life has never been the same since, as Angela became ill after Sylvia’s birth seven years ago.

And two years ago she was diagnosed with a life-threatening condition called adrenal insufficiency.

Angela, of Chapel Street, Coppull, said: “I was sick from the day she was born seven years ago. I have been ill ever since.

“I kept getting told I had fibromyalgia until I collapsed two years ago, in July 2013. I got married and two weeks later I collapsed and was taken into hospital and they realised what was wrong.”

“I am not bothered about running marathons, I just want to be able to cook a meal by myself and go to the park or go swimming with my daughter. I want to do the basics.”

Angela Milnes

Angela says she felt exhausted all the time and her muscles were weak.

Adrenal insufficiency means her body is unable to produce the essential stress hormone cortisol.

Angela, 32, said: “I don’t make the hormone in my brain to tell the adrenal glands to work. I think when I had my baby something was damaged in my brain.

“It’s caused growth hormone deficiency as well.”

The only way to provide the body with cortisol is by taking steroid tablets. Without this, Angela’s blood pressure would drop dangerously low, resulting in an “adrenal crisis”, coma and death.

But the amount of stress on the body changes constantly, so it is difficult to know how much medication is needed - and what will cause the stress.

Angela said: “Anything which is stressful makes me ill. Walking is stressful or being happy. If I go to church and I’m feeling really happy, that causes stress on the body.

“Doing good things as well as physical things makes me ill.

“I do take tablets to try to control it but the stress levels change constantly and it’s hard to monitor it.”

Catching a bug can also lead to problems, as the amount of cortisol produced by the body normally increases naturally and she has to try to match that with extra medication.

Angela is taken to hospital about once a month after suffering an adrenal crisis and collapsing, and she now carries an emergency hydrocortisone injection.

The condition means she spends most of her time in bed, is unable to walk long distances and uses a wheelchair to attend hospital appointments and leave the house.

Angela suffers daily from chronic exhaustion, pain, headaches and nausea.

She said: “On a daily basis I’m in a wheelchair because I don’t have any energy to walk. I can stand up and get from one place to another, but not more than a few metres.

“If I do go out, which I’m not really well enough to do, I can do it but then I will be sick for three or four days afterwards.”

Although the steroid tablets help to manage Angela’s condition, they have led to her gaining six stones, becoming pre-diabetic and weakening her immune system.

She is now trying to lose the weight, already shedding more than two stones.

Angela relies on her husband John, who is her carer, to help manage her cortisol level and ensure she does not collapse. He also plays a key role in caring for Sylvia.

“I have always provided and done the best for her, but I have always needed help,” Angela said.

“I can’t take her to school, my husband has to do it.

“I do a lot of education stuff with her - she comes to me and we will sit on the bed and hang out - but I can’t do stuff for her the way a normal mother would and it’s really frustrating.”

Angela believes her condition could be improved with a hydrocortisone adrenal pump, which infuses small amounts of cortisol directly into the blood.

But this is not widely available in the UK and Angela says she cannot get the pump through the NHS, as she is able to take the medication orally.

She has launched a fund-raising appeal and hopes to collect £9,000 to cover the cost of getting the pump privately.

Angela said: “I made friends when I got ill with people in America who were sick like me in bed and now they are climbing mountains and running marathons and living normal lives.

“Because I can see that happening, I want to do the same. I am not bothered about running marathons, I just want to be able to cook a meal by myself and go to the park or go swimming with my daughter. I want to do the basics.”

Angela’s condition means she does not spend much time socialising - so she started a blog to share her story earlier this year.

It has proved to be successful, with thousands of people visiting to read her articles about her health, but also parenting, healthy cooking and other topics.

Angela said: “I love it. It’s really fun to do and it’s kind of therapeutic. I’m stuck inside all the time and don’t talk to anyone, so it’s my way of socialising with people.

“I find it difficult to do because I’m ill but I grit my teeth and fight through it because it needs to be done.”

The blog has already provided Angela with new opportunities, for example being sent products to review, and she hopes it will eventually provide a full-time income for the family.

And Angela has already been recognised for her efforts, winning a bronze MumpreneurUK website award.

“I really want to make a difference in people’s lives and for me blogging is the only way I can do this. Winning this award means everything to me,” she said.

Angela’s blog can be found at www.daysinbed.com and her fund-raising appeal is at www.gofundme.com/Angelamilnespump.