What It Feels Like... to live with debilitating eczema

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What It Feels Like... to live with debilitating eczema
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My whole body felt like it was on fire as I sat for eight hours in the same chair, refraining from scratching.

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I was in the process of adjusting to my new 9-5 job in an office, which started in August 2021. The new role was good, but working in an agency is, by definition, stressful.

This stress, change of environment and having to adapt to a new lifestyle caused my skin to respond with an eczema flare-up – something I’ve dealt with for over 10 years now.

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I was doing everything I could to avoid irritating my skin at the time. I was wearing cotton, trying not to sweat.

I was often cycling to work, so I had to be very careful to not be wearing extra layers that didn’t allow my skin to breathe; a knitted cardigan on top of my cotton long-sleeves, for example. I was also drinking a lot of water to keep me and my skin hydrated.

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I felt self-conscious, especially because I scratch without even noticing, and I tend to be irritable and on edge when I’m in the middle of a flare-up. 

But I couldn’t apply the steroid cream my GP had prescribed as my shoulders were bleeding, and you can’t apply steroid cream to open wounds. The back of my knees had become a permanent war trench, and my lower back was covered in patches of dry skin, increasingly becoming so dry my skin ended up breaking and causing bleeding and wounds. 

I just had to power through and keep thinking that eventually, this feeling would pass. This is a battle with eczema I have been fighting since I was 12 years old, which often fluctuates in gravity.

In 2012, I was first diagnosed with asthma attacks, which were connected to a dust allergy, and a couple of years later, flare-ups in my skin confirmed the inevitable: atopic dermatitis – the clinical name for eczema.

My first memory of eczema is not of the condition itself but rather the multiple visits to the dermatologist in my childhood.

An eczema flare is a constant feeling of being uncomfortable that just doesn’t go away. The skin systematically dries out, and it turns scratching into an almost reflex action. Scratching only makes it worse, it makes dry skin turn into wounds. 

One of the hardest parts about the condition is acknowledging that it will never go away

Incidents don’t happen regularly or consistently. They can appear when I experience a change of circumstances, when I’m under a lot of pressure, when I wear something that upsets my skin (wool for example) or they can just happen to appear.

If treated with prescription steroid or corticoid creams, the worst part can go away in a week or two, but sometimes they take up to a month to calm down, as you can only use steroids/corticoids for one week at a time.

They stayed very mild and very controllable for quite a long period of time and I was eczema-flare-free for about two to three years. It was in 2017 when the itchy skin and the dry patches came back, accompanied by the wounds, the lack of sleep, the anxiety, and the constant stress. 

I had moved away from my hometown in Spain to study at university in Scotland. I was slightly scared of the change, which tends to be one of the key ingredients in the flare-up recipe.

I did my best to feel at home in my new environment, and I kept looking for tips that delayed or avoided the flare-ups.

One of the hardest parts of the condition is acknowledging that it will never go away. I realised this very recently.

In the past year, I’ve had the worst flare-ups I have ever experienced, and all of them very close together in time. This is when I realised there was nothing I could do about it, I just needed to learn tricks to help me live with it.

It was at the very start of the first lockdown that the first very bad flare-up knocked at my door, and it is still affecting me today. This was way worse than any I had had before.

What I struggle with the most is the lack of sleep. Some days the itchiness becomes so unbearable that I’m unable to fall asleep. When I do manage, I’m awake again within a couple of hours.

The exhaustion triggers a lot of other emotions, such as anxiety and nervousness.

And then the eczema starts spreading. For me, it always starts on my shoulders and then moves across my lower back, the back of my knees, my legs, my hips. Imagine having one of those sudden itches that you just need to scratch, but everywhere, constantly.

I’ve tried all sorts of creams on the market, been prescribed corticoids, steroid creams, and emollients – moisturising treatments – to help control the condition. 

Oat-based lotions have been among my best friends for almost a decade now

Changing treatment when one doesn’t work and listening to your body, to me, is the most important thing. One of my best allies has been nettle soap. It creates a barrier for the skin, in a similar way to emollients, but more naturally.

Oat-based lotions have been among my best friends for almost a decade now. But sometimes each lotion only works for a certain period of time.

When they stop working, I listen to my body because it knows best. When I notice my skin starts being dry very shortly after applying, that’s when I know it’s time for a change.

Wearing cotton-based fabrics also helps, but it doesn’t completely ease the discomfort. Nothing does. And painkillers are not a solution. It’s not a headache you can tackle with an ibuprofen or a paracetamol, painkillers are totally useless against itchiness.

Throughout my journey in the world of atopic skin, I have learned that taking care of yourself can be a lot more important than taking care of your skin. I can’t speak for anyone else’s journey, and everyone’s experience is different. 

I have learnt to breathe slowly and count to 10 when I can’t fall asleep instead of crying in despair, when flare-ups get ugly, they affect everything in your life: your self-esteem, the way you look, your sleep, your mood, your social interactions… so sometimes I just needed to cry it out.

Keeping calm, drinking a lot of water, and learning how to prevent a bad flare-up is what gets me through them.

I do complain, especially to my partner, who suffers it with me almost every flare-up – she has taught me I have a right to. But it has also become important to me to acknowledge that there is nothing to do about it, and I just need to do my best.

My eczema journey has been challenging to say the least because it’s not easy to live a normal life when you can’t even sit down in your couch without being uncomfortable.

But relentless complaining doesn’t make it better.

Prevention means the world to me. It has been a challenging journey, but I am undeniably and relentlessly learning how to cope with it the best I can.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

Share your views in the comments below.

In this exciting new series from Metro.co.uk, What It Feels Like… not only shares one person’s moving story, but also the details and emotions entwined within it, to allow readers a true insight into their life changing experience.

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