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Blogger shares graphic details of her debilitating skin condition

When she's not writing, Claire Gillespie can most often be found wiping snotty noses, picking up Lego, taking photos of her cat or doing headstands.

Positivity is the key to surviving Topical Steroid Withdrawal and dealing with severe eczema

From SheKnows UK
Topical steroids are often prescribed to treat severe eczema but research has shown that prolonged use may lead to addiction and even worse eczema. I spoke to 25-year-old blogger Amy-Lou James who had been using steroids to treat her eczema continuously for 25 years until she began the Topical Steroid Withdrawal (TSW) process in May 2014.

It was a social media comment that lead to Amy-Lou's decision to stop using topical steroids. "I'd started to speak out about my eczema on Instagram in an attempt to raise awareness of the physical and emotional effects of living with severe eczema," she explained. Having been unable to get to her doctor to collect her steroids for around three months, her skin had really flared up. When she was finally able to pick up all her topical steroids, he posted a picture of them on Instagram, prompting a fellow eczema sufferer to recommend the video 'The Dangers of Topical Steriods' on the ITSAN website.

"Once I'd seen the video I knew I had steroid induced eczema," said Amy-Lou. She consulted her doctor, and was advised to stop using steroids altogether to rid her skin of its steroid addiction.

Photo credit: Amy-Lou James/Instagram

The topical steroid withdrawal process can be unbelievably difficult. "Months one to four were the worst I'd say: I ached a lot, I hurt a lot and I cried a lot," said Amy-Lou, describing her swollen face and limbs, the constant bleeding and flaking of her skin, and the unpleasant-smelling "weeping ooze" all over her body.

"I looked absolutely nothing like myself," she said. "It was hard to just open up my eyes because my eyelids were swollen and painful. I had the sweats really badly, I'd go hot and cold and frequently faint."

Even the fundamental aspects of daily life that we all take for granted were almost unbearable, such as walking, sleeping and washing. "I had to stop taking showers and opt for a bath instead because the running water would hurt as it hit my body," Amy-Lou said. "Bath time was hell: my skin just cannot handle water! I'd get out of the bath and lie on the floor naked, just tearing my skin apart. The only thing that would help is having someone stroke my back for hours to calm me down and take my mind off it, and, so thus, my partner became kind of my carer."

"Stretching my legs to walk was really difficult — I just wanted to lie down all day, wrapped in cotton blankets" she went on. "I literally couldn't move. I developed 'elephant skin' on my hands, neck, knees and under my arms around month two, which made my skin really tight."

The following month, the hair on her head and eyebrows started falling out. "That was hard to deal with," Amy-Lou said. "I'm still battling that at the moment. It's extremely common for TSW fighters to lose their hair."

Check out pictures of Amy-Lou's TSW journey.

A year into her TSW journey, Amy-Lou admits that she still has visible eczema, but reveals that it's "absolutely nothing like it was at the start of the withdrawal process." She still itches, but says it's an itch she can handle. Her body is no longer swollen, and it's practically impossible to detect the eczema on her legs and stomach.

"My hands, neck and chest are a nightmare, but my face and arms are so much better," said Amy-Lou. "I still have flare-ups but they don't last as long now. I still have bad skin days and good skin days but now it is manageable and that's the main thing."

As difficult and painful the physical side of TWS clearly is, Amy-Lou believes that the change in lifestyle is the hardest part. "It completely takes over your whole life," she said. "It affects the way you look, your personality, your ability to do your job, the things you wear, your relationships, your sleep, your ability to do the little things like get out of bed in the morning. Accepting that you can't do all the things you used to because you're physically incapable is really difficult."

"The sleep deprivation is one of the worst things," she continued. "Being constantly exhausted is incredibly difficult. I don't know how I've managed to keep working if I'm honest. Most people have to give up work whilst they go through this. I suffer from depression also which makes every day even harder to get through, but you have to just do all you can to remain as positive as possible. Positivity is what has got me through these last 10 months."

Photo credit: Amy-Lou James/Instagram

More: 20 Quotes about depression to kick off Depression Awareness Week

Like most people with debilitating skin conditions, Amy-Lou has tried a wide range of natural remedies, with varying results.

"It's tough to choose the best because everyone is different," she said. "A lot of people say coconut oil is amazing but for me, it's awful. I bathe in oats a lot and wash in a porridge-based soap. I use cucumber to cool my skin down on my face if I'm having a flare-up which I know may sound weird, but it works for me!"

After a lifetime with severe eczema, she's learnt that one of the best things she can do is give her skin a break from the constant scratching: "The best way to do that is with bandages: wet bandages, dry bandages, whichever works for you — but cover up those itchy areas as much as possible to give the skin a little help to repair itself from all the damage you do when scratching."

Photo credit: Amy-Lou James/Instagram

Diet also plays a major part in Amy-Lou's management of her eczema, and she advises sufferers to bear in mind that "anything that comes out of your pores like dairy, certain spices, garlic etc., will always irritate the skin."

She keeps dairy to a minimum, tries to avoid sweet sugary treats, and takes a range of supplements, including iron and Vitamin C tablets, olive leaf extract and maca root.

Weather extremes and stress can also trigger a flare-up. "The worst thing you can do during a flare-up is get stressed, which is easier said than done," Amy-Lou said.

Photo credit: Amy-Lou James/Instagram

Talking to Amy-Lou, her positive attitude shines through, and this is what she credits with getting through each day with eczema. "I try to take the good with the bad," she reflected. "Sometimes the emotional trauma caused by eczema makes you feel like you're alone in your battle but if there's one thing blogging has taught me, it's that there's a whole community of people suffering with skin conditions out there, going through the same thing as I am. It's a lovely feeling to finally feel supported in this continuous battle against eczema."

"I'm proud to say I am an eczema warrior,: she said. "We humans are stronger than we think."

Photo credit: Amy-Lou James/Instagram

Eczema: The facts

  • Skin diseases such as eczema are the most common reason we go to the GP according to figures from the British Skin Foundation.
  • Eczema is estimated to affect up to 20 percent of school children and up to 10 percent of adults.
  • The condition is characterised by dry, itchy, red skin, caused by a lack of fat between the skin cells. Water is lost from the skin cells, causing them to shrink, which results in cracks opening up between them.
  • Substances that can trigger an allergic reaction, known as allergens, can get into the cracks and cause inflammation.

For more information about Topical Steroid Withdrawal, visit the ITSAN (International Topical Steroid Awareness Network) website. You can follow Amy-Lou's ongoing journey on her blog.

More on eczema

Eczema 101
Natural eczema treatments
Tips to treat eczema in kids

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