To allow time for her pain medication to kick in so that she can function.

Having lupus means the single mother of two is not at her best in the morning.

The chronic autoimmune condition that affects every aspect of her life could shorten it.

After she was diagnosed she slumped to her lowest trying to manage constant pain and the thought she could die and leave her now 11-year-old twin sons weighed heavily on her mind.

She credits her strong Christian faith with helping make the adjustment to what she is dealing with.

‘‘If I die I know where I am going and I know what God’s plan is for me and I accept that,’’ she said.

‘‘I would like to live to see the boys be able to take care of themselves.

‘‘We sat down a couple of years ago with their dad and his new wife and both sets of grandparents to talk about what would happen if I die and I feel a lot better since then.’’

She feels lucky to receive a disability support pension when other people with lupus struggle to qualify.

Medication is expensive and so are the out-of-pocket costs associated with ongoing medical appointments.

‘‘I currently see a rheumatologist, pulmonologist, cardiologist, gynaecologist, endocrinologist, a gastroenterologist in Melbourne and one here, and my wonderful GP,’’ she said.

‘‘Some people with lupus really struggle to get a disability support pension as it is not a stable disease and doctors have trouble with what the long-term outcome will be.’’

Ms Williams has lost 40 per cent of lung capacity and has severe vertigo.

‘‘I can’t put clothes on the line. 

‘‘I can’t look down while I walk.

‘‘It’s like breathing through a straw so I can’t walk very far.’’

Arthritic knees make it hard for her to bend and she can’t hold a pen to write.

‘‘I sleep a lot,’’ she said.

‘‘It has had a huge impact on the boys and sometimes they have been in tears worrying.

‘‘The reason we don’t live alone is because I had a fall one night and could not get up.’’

Basically lupus results in her body working against her.

Systemic lupus erthematosus (also called SLE) means her body’s immune system isn’t performing its normal role of fighting off infections and diseases.

Her immune system attacks her own healthy tissues.

Each lupus patient is different and for some people it may just affect the skin, joints or both.

In others the lungs, kidneys, blood vessels, brain and other parts of the body are affected.

Common symptoms are fatigue, joint pain and swelling, skin rashes and lesions made worse by the sun, ulcers in the mouth and nose and anaemia.

There are flare periods where symptoms become a lot worse and can occur during times of stress or can be triggered by the sun, infections and pregnancy.

There is no cure.

It is not known what causes lupus, but more women are affected.

It is believed to be a combination of factors, including genetics, viruses, sunlight, stress and hormones.

Lupus can take some time to diagnose and in the past a lot of people were probably not diagnosed.

A few months ago Ms Williams survived a heart attack.

‘‘I have a lot of inflammation around my heart and lungs.

‘‘I get a lot of angina pain but this was different.’’

A genetic connection to lupus is clearly evident.

Her mother has lupus and her grandmother and other (female) family members.

Her mum’s condition is able to be managed much better.

‘‘She is out working in the fuschia nursery today. She wears a pedometer and she often does 25,000 steps where people would aim to do 10,000 a day.’’

In contrast, Ms Williams struggles to get to the front door and is breathless.

Talking to ’Scape has caused sweat to bead on her face and is starting to drip down her back.

‘‘If I get stressed my body goes into chaos,’’ Ms Williams says.

‘‘I used to be quite a stressful person but I have learnt not to be.’’

Ms Williams had niggling illnesses all her life.

‘‘The end of my marriage could have triggered some of my conditions,’’ she said.

Ms Williams and her parents ran the Fuschia Fantasy Tea Room and her parents own a landmark fuschia nursery at Lillico.

The cafe and their home have stunning views of Bass Strait.

The cafe was open for 13 years before she had to shut it.

Four years ago, after she had major dental work because of Sjorgren’s Syndrome, which affects salivary and lacrimal glands and there isn’t enough moisture in the body, Ms Williams couldn’t heal and has been unable to work since.

‘‘I spent 26 weeks straight on antibiotics,’’ she said.

At 37, she has moved in with her parents and they are her carers.

Her crippling list of serious complaints is linked to lupus and some are side effects of the medication that takes up a great deal of space on the dining table.

Liver tumours, which could become cancerous or bleed, are caused by the medication she has taken.

When a biopsy could not be done in Tasmania due to hospital staff shortages she was sent to Melbourne and will need to go to back every six months for further checks.

Ms Williams takes about 47 medications a day and there are creams to apply.

‘‘Anti-malaria drugs are one of the strong drugs that work for lupus and I take anti-rejection drugs as well,’’ she said.

‘‘I take a lot of pain relief.

‘‘I have stuff to stuff up my nose.

‘‘The ulcers can be quite horrible and painful.

‘‘At the moment I can’t drive because of low blood pressure.

‘‘I have sleep apnoea so I don’t drive far.

‘‘Most days I don’t do a lot physically.

‘‘I get really puffed out. Eating puffs me out.’’

Before the illness, she used to be fit.

The year before her sons were born she ran the Burnie Ten in less than an hour.

Ms Williams is speaking about living with lupus in the lead-up to Lupus Awareness Week (October 20 to 26) to raise awareness.

‘‘Most people don’t realise what it is and what it can lead to,’’ she said.

‘‘There are lots of invisible illnesses out there and people are living with pain others can’t see.’’

She has been yelled at more than once by random strangers for using the disabled car spots.

‘‘I’ve had people shake their finger at me and yell,’’ she said.

‘‘It makes youupset when you are trying your best to deal with it and you feel as if other people are knocking you down.

‘‘My bodyhas physically changed so much that people who have known me all my life don’t even recognise me.

‘‘I’m being diagnosed with new things all the time and have been in constant flare for years now.

‘‘Some people can be in remission and go back to work but then they get sick again.’’

Ms Williams said she is not her illness.

She says she’s the same person.

‘‘I can’t do some things that I used to do but I can play board games with my children.

‘‘We love watching movies and we can still have fun.’’

Her handsome look-a-likes Micah and Malachi grin at their mother and cuddle into her from either side.

‘‘It was a bit hard for Malachi and I to look after her – it’s good to have nan and pop,’’ Micah

says.

Fellow Oldaker Street Christian Centre church members have delivered meals when Ms Williams has been really sick and people offer to drive her to appointments.

What she wants for the future is to be able to breathe better.

‘‘I would love to be cured; whether it’s a miracle of God or because of the doctors.

‘‘It would be awesome to run and jump and dance again.’’

Source: The Advocate