Uncomfortable in her own skin
Heather Millar has a skin condition called psoriasis. She tells BECK ELEVEN what life is like when the largest organ of your body is affected by the debilitating condition.
Skin. It's our largest organ and the most exposed. It's the wrapping that protects our insides and, if models are to be believed, it is supposed to be flawless.
So life can seem unfair to North Canterbury woman Heather Millar who suffers from swathes of dry, scaly, red patches of skin all over her body - an incurable and chronic skin condition known as psoriasis.
To describe how it feels, Millar says it is like a "prickly irritation all over". Some days it feels like she could fry an egg on her own skin.
Millar is one of an estimated 125 million people worldwide who live with psoriasis or psoriatic arthritis. One in 50 New Zealand adults has it to some extent. It is caused by an over-activity of the immune system in the skin.
The cells multiply at an abnormally fast rate and accumulate, producing chemicals which act as if they are fighting infection or healing a wound. Instead of doing these things, they produce thick, unsightly scales that flake off causing embarrassment and rude stares.
Millar first noticed red patches on her elbows, knees and scalp when she was 15. Her mother also had psoriasis so she considers herself lucky she was immediately diagnosed and taken to a specialist.
The first treatment actually burned her skin.
"It's a horrible age to get something like that. It's a self-conscious age and I was a real headache. I'm one of the sensitive ones," she says.
The patches came and went through her late teens and early 20s. Now 60, she remembers meeting her husband, Chris, during winter when her skin was calmer.
"It was back in the carefree days and stress exacerbates it, so maybe I just wasn't worried. Life was sweeter then."
Stress is considered a contributing factor but Millar can never predict when a stress-related flare up might occur. It can be later the same day, that month, even six months down the line. Things changed when she had children.
Their first son, David was born in 1978. Whether it was the stress of a newborn or hormonal changes, the psoriasis worsened. Their second son was born in 1982 and also suffers on and off from the condition.
At its worst, the patches were raw and covered her body from chin to knees. She has been hospitalised and needed as much as three weeks off work as her skin flaked and regenerated.
Normal skin cells regenerate roughly once every 20 days. When her psoriasis is bad, this is happening every 12 hours so the energy required to keep up this biological process is extremely zapping.
"Your body is doing its own thing and it's incredibly draining. And it is difficult to regulate your temperature. If it drops you take ages to warm up again. You just go along your day until you discover you're shivering. And of course, the other way around.
"People with psoriasis tend to wear a lot of layers and take a cardy or jacket with them."
The day Mainlander visits Millar and her husband in their Eyreton home, she pulls up her sleeves and trousers to reveal angry-looking patches on her arms and legs.
"It's quite good at the moment," she says.
A bright red patch in the small of her back is "healing". Severe patches can take up to two years to heal and return to its normal colour. She has grown accustomed to stares and uncontrollable outbursts from strangers.
"You might be in a shop and if a bit is peering out from under your sleeve someone will say 'oh, you're peeling'. Sometimes I say it's psoriasis, sometimes I just say 'yes'. I'm 60 now, I'm more used to sideways looks but for young people it can be devastating.
"As I've gotten older I've met more people with it. When you're younger and with this kind of skin condition, you keep to yourself so you're not likely to meet people with anything like it. I was lucky because Mum had it and I think that brought us closer together."
At the top of Millar's thoughts on psoriasis is that she believes it should be recognised as a social disability.
"People can be cruel through their ignorance. They think I'm dirty or that it must be contagious. That's the feeling I get anyway. I'm also sure that people with psoriasis can be overly sensitive too."
Day-to-day tasks which other people take for granted need planning and care by Millar. She worries about cutting her legs while shaving in case it gets worse or infected.
Keeping on top of it "drives her nuts".
While treatment from a skin specialist is vital, she also uses home-remedy routines. She bathes in oatmeal. It is not exactly a dip in porridge but Millar puts rough oats in a laundry bag then rubs it so the fine colloidal oatmeal falls into the water. Then she soaks in it until her scales fall away.
Each skin routine must be tailored to suit the individual. Some creams may work for a while before they start to feed the psoriasis and make it harder to control.
Millar can list almost every cream on the market.
"It's all trial and error. Some creams work for six months then flare up. Some people find something that works for them and it changes their lives.
"And it's not cheap," she says.
She has heard that in the United Kingdom, sufferers can apply for subsidised travel to Turkey where two types of fish swim in their waters. One species swims up to eat the scales, the other seals the skin.
She wishes Turkey was a bit closer or that a lottery win was in her future.
Sun can help. A special UV treatment can be found in the health system but by the time Millar graduated to the front of that waiting list, her skin had cleared up.
"It was beautiful. Isn't that always the way?"
And while sun can be curative, she avoids exposing her skin at crowded beaches. She loves swimming but keeps pool visits down to twice weekly because chlorine can aggravate her skin.
"But when it's bad I don't go at all because of how I look. If I'm really flaky it will come off in the water and that's not fair on other people. You can't help it, the water naturally sloughs the skin and lifts the scales but that's really not what swimmers want in their water."
She puts freezer packs on the hot spots. Some days she won't even wrap the packs in a protective layer, they go directly on her skin and she breathes a sigh of relief. Some spots will itch and when she gets eczema over the same patches, the pain has been excruciating.
It is also important to find a shampoo and conditioner that suits. The scalp is a common place for flare-ups to occur and when it's bad, sufferers look like they have a severe case of dandruff.
Millar remembers back to 2003 when she was seconded to the Ministry of Education.
"Ugh. They had black carpet and all around my desk and where I sat it was like snow.
"And thank goodness they don't really make black toilet seats like they used to. You'd leave flakes on the seat and have to make sure you'd dusted them off.
"You vacuum more. I have a rug on my side of the bed that I can just flick out the window.
"It's humiliating going away to a hotel and sharing a room with a colleague - even on my own, I take an old towel and put it by the bed.
"Work cars are the pits. If I pick someone up, I'll vacuum before I get them. One colleague was really nasty about years ago. She reacted very badly."
If Millar is trying to look for a bright side, she thinks having the condition has made her more empathetic.
"You feel for people who are at a disadvantage through no fault of their own. You are more compassionate and treat others nicely. But the other side of it is that you build a wall of defence."
Depression is a common side condition. So is diabetes, weight gain, anxiety, cardiovascular disease and psoriatic arthritis. Millar says she keeps herself upbeat but struggles some days.
"Mostly I'm happy. Chris is a wonderful, sympathetic husband. He helps me with the creams and when I've been off work with it or in hospital he just steps in and does everything.
"You manage your jolly skin. Don't you let it manage you. You moisturise, moisturise, moisturise. And you have to let people in. There is help. You just have to find it."
The Psoriasis Association educates patients and their families living with the condition. Visit psoriasis.org.nz.