Eczema Week: FAQ

When you have chronic eczema, you get asked the same questions over and over and over again. Most people are very well-meaning when they ask about eczema, but it does get a tad repetitive and frustrating. And by a tad I mean a lot.

So here’s an FAQ! I think I covered most bases, but if anything you’re curious about is missing, let me know and I’ll add it to the end.

Questions include: Why don’t you stop scratching? What does the itch feel like? Is there a cure? Have you tried yoga?

Scratching must make it worse. Why don’t you stop scratching?

Ugh.

Nobody sits around literally ripping their skin apart unless the underlying sensation is so severe that the agony of tearing into their skin is the less painful option. Scratching hurts. Not-scratching hurts more. Scratching gives some relief to the ever-present itch. Scratching keeps me sane, frankly.

And finally, studies have shown that scratching “causes patterns of brain activity that are associated with pleasure and reward” – or at the very least scratching “suppresses the emotional components and misery of pain.

I’m going to be in pain either way, so please leave me alone and let me scratch.

What is your daily skincare routine?

It varies depending on how bad my skin is. At the minute I’m putting cream (Diprobase) on head-to-toe about four times a day. It’s boring. I watch a lot of Netflix. Particularly inflamed areas get a steroid cream. I use medicated shampoo to help the skin on my scalp (horrific area to have bad eczema). In the mornings I take a handful of Evening Primrose Oil capsules – no scientific proof for it, but anecdotally I can tell you they make a massive difference for me. At night I take antihistamines to calm my skin overnight (though I’m gearing up for a fight with my new GP about that).

You’re meant to put cream on carefully but I just slap it on. Takes too much time to pay attention to it. My skin soaks up cream like a sponge, and I’m currently getting through a 500g tub in about 5 days.

Why do you say eczema makes you tired?

This one’s complicated, and I don’t have a medical answer, only an anecdotal one. There are a number of components.

1. Spoon theory.

Essential reading for anyone either suffering from a chronic illness (physical or mental), and for anyone who knows someone suffering from a chronic illness – which, statistically, basically means everyone.

spoons
credit

To try to sum it up quickly: ‘spoons’ are used as a tangible measure of the intangible energy a person has to get through the day. Most people have near-unlimited spoons – you might run out close to bedtime, but you don’t have to worry that if you do thing a, you’ll be unable to do thing b. Chronic illness sufferers (spoonies), on the other hand, have limited spoons. When my skin is flaring up, I have almost no spoons. If I manage to get up and out the house, I can just about get to class – but I wouldn’t be able to then go to the shops AND meet a friend AND cook dinner AND go for a drink AND read for class AND – you get the picture.

This sounds nuts to non-spoonies. I thought I was going crazy during a terrible flare up a couple of years ago that I just didn’t have the energy for more than one or two things. Then I found spoon theory. I can say for certain that during good periods I suddenly have a ton more energy than during flare ups. When flare ups last a long time, I always become convinced that I’m useless, lazy, pathetic, that other people my age have boundless energy and can do tons more than me. Then the flare up fades and I find that boundless energy in myself. Flare ups = fewer spoons. Good days = more spoons.

2. Face flare ups.

For some reason, when your face is bad you feel drowzy and completely out of it. I don’t know why. Maybe it’s your body trying to force you to sleep so it can heal.

3. The action of putting cream on.

Again, I don’t know why but ‘creaming up’ (i.e. putting moisturiser over the entire affected area [which for me is my entire body]) seems to use up all my energy. By the time I’m done – which is usually 20-40 minutes after I start – I am shattered. I can’t face doing anything other than lie in bed in a stupor. Depending on how bad my skin is right, this part may last another 40 or so minutes. If for whatever reason I have to spring into action before then, it takes me twice as long to process information or do, well, anything.

 

But like, have you tried yoga?*

*substitute ‘yoga’ for whatever it is you want to tell me about, whether it be creams or aromatherapy or food or drugs or whatever.

I have a really, REALLY expressive face. When I am asked this question – which, when my skin is bad can be three or four times a day – I have to fight to stop my face at best from glazing over, and at worst morphing into something resembling this:

series5weepingangels

If the person asking is a fellow-sufferer of chronic, severe eczema, I listen and ask questions and take note.

If the person is not, well. The majority of people who suggest things to me only have experience with significantly less severe eczema, or who are alternative medicine devotees. While there is a part of me that does appreciate the thought, this kind of conversation overwhelmingly leaves me irritated, frustrated, and upset about my skin.

I have tried a lot of things. Most make my skin worse. If I have tried your suggestion, it clearly didn’t work. If I haven’t tried it, there’s a good reason. Perhaps it’s medically inadvisable. Perhaps I react badly to one of the ingredients. Perhaps the potential side effects put me off the idea. Perhaps I’m just too damn scared to try whatever it is because when you have eczema, the vast majority of ‘solutions’ make it much, much worse. It’s a terrifying prospect.

What are you allergic to?

Technically, only cat dander. But I react badly to other things, and if my skin is flaring up then I’ll be more sensitive to them.

I can’t touch:

  • wool
  • creams containing lanolin
  • soap, detergent, washing up liquid, etc
  • animals in general
  • most polyester clothes
  • water
  • most make up and perfume

I carry a scarf or cardigan at all times to be able to protect bare skin against the materials furniture is made out of. For example, if I’m in shorts, all seats will irritate my skin after a while, so I sit on a cotton or silk scarf.

During flare ups I can’t drink alcohol, I have to avoid rich foods, anything dairy- or tomato-centric, and anything citrus, anything high in sugar or salt or fat. So, basically everything.

I don’t have hayfever, which is a relief, but I do have mild asthma.

That’s all I can think of right now. Will update if I think of more.

If your skin is so bad, how come I can’t tell in photos?

mee
Notice the goldy filter glow over everything

Filters. God’s gift to millennials.

Also, lol, do you really think I’m going to post a picture of my skin looking BAD? I’m paranoid enough about it, I don’t need photographic evidence online for everyone to see.

If my skin is good, then you’ll get a hundred pictures of it. If it’s bad, I’m not going to look in a mirror let alone pose for a selfie. If I look pale in a picture – it’s filtered. If the picture is black and white, then my face was very pink. If I look suspiciously goldy-coloured, filtered. If it’s not filtered, then I’ll probably have a caption like LOOK AT MY SKIN IT’S SO GOOD OMG LOOK AT MEEEEEEEEEEE. You’ll know about it.

How do you travel?

With difficulty.

Even going somewhere overnight I need to bring a mini medicine cabinet, which gets pretty heavy. More than one night needs more than one pair of pyjamas, in case the first set gets soaked with cream. I bring a pillowcase and a cotton sleeping bag liner too. The longer the trip, the more I need to bring.

cream
packing for america

Travel itself is also a bit of a mess. Whether plane, train, bus, or car, my skin dries out dramatically, which is painful. Sitting in one place for too long also irritates my skin. Journeys that last more than 5 hours are a mess because I have to put cream on at some point, which usually means spending half an hour in a tiny bathroom trying not to think about how disgusting it is, and praying the door stays locked.

Moving abroad was…an adventure.

Why are you so weird with temperatures? You live in Scotland, you can’t possibly be overheating as much as you say you are.

Fun fact: the word ‘eczema’ comes from the Greek word ‘ekzein’ which means ‘to boil’. I’m sure that’s probably because your skin looks like it’s boiling – red, often blistering – but for me the connotation of ‘extreme heat’ is also very relevant.

I struggle to regulate my body temperature. I don’t know for sure if that’s a me-thing or an eczema-thing, but either way I seem to overheat quite easily. And when you have eczema, overheating is CODE RED, EVACUATE THE BUILDING, DO NOT PASS GO, LEAVE YOUR BELONGINGS BEHIND (or other mixed metaphors). Warm skin = pain. Major pain. The need to itch intensifies exponentially. All I can focus on is that my skin feels like it’s on fire and I need it to STOP.

My face in particular seems to get very warm at night, so I have a fan next to my bed to blast cold air at me, while the rest of me shivers under a duvet. I usually carry a handheld fan in my bag as well. If I’m in a hot room you might notice me frequently ducking outside for a few minutes – or holding glasses of water against my face and wrists. It probably looks weird. I don’t care tbh. I am loooong past caring what other people think about me coping with my skin.

Unfortunately, temperature can affect skin in another way: cold weather is the WORST. You know how your hands get dry and lips get chapped in winter? Imagine that over every inch of your skin. IT’S NOT FAIR. Heat is bad, but so is cold? THIS DOESN’T MAKE ANY SENSE.

Why do you act like a total nutcase when it starts to rain, or you get splashed with some water? Are you secretly the Wicked Witch of the West?

You know, sometimes I feel like I might be. One splash of water and I’M MELTINGGGGGG.

The real reason is a little less exciting. Remember the helpful brick wall analogy from yesterday’s post? About how natural oils and fats are the mortar holding skin cells together? Water breaks them down, thus making my skin even dryer and tighter and more painful. Even if it doesn’t hurt in the moment, it will hurt later.

Another part of the explanation is that eczema often means broken skin and wounds. Remember having a paper cut, or a scrape, then washing your hands? It stings like you poured acid on it. Severe eczema = a lot of broken skin = your entire body feeling like you rolled around in nettles.

Yes, that means bathing hurts. Showering involves putting a thick coating of cream on beforehand as protection, washing it off (possibly shrieking at the pain while you’re at it), scrubbing away at all the gross dead skin, then after you dry off having to put layer upon layer upon layer of cream on to replenish the moisture.

So does it bleed?

Yup. A lot. You become an expert at getting blood out of fabric. I had a thing last year where my face would bleed constantly but I couldn’t feel it, so I didn’t realise was doing a Carrie until I glanced in a mirror.

Fun times.

carrie-blood

This is all kinda disgusting.

Indeed it is. And I’m a squeamish person at the best of times. ECZEMA SUCKS.

How does the itch feel?

This is a question I really struggle to answer. I usually avoid answering properly by saying: think of the worst itch you ever had. Maybe a rash – chickenpox or stinging nettles – or maybe a horribly itchy jumper or blanket. Multiply the feeling ten or twenty times, spread it over your entire body, and imagine living with that every day for the rest of your life.

Which does answer the question, I suppose, but it’s not really what people are asking. I’m going to try to answer it more comprehensively, though even this doesn’t fully capture it:

There’s a low humming in the background, and it never goes away. You get used to it. You ignore it, mostly. But it’s always there. It surges and fades, ebbs and flows. Sometimes it’s like a wasp flying around your head – loud right by your ear, then quieter as it flits off to the other side of the room, then louder again, then quieter. At night, when there’s nothing else to focus on, you can hear it like a pneumatic drill even if it hasn’t actually changed.

And then, a couple of times a day, the humming begins to build up into a roar – like a distant HGV getting closer and closer and closer until it’s bellowing right next to you. Louder and louder, nails on a chalk board screaming in your ears and drowning out every other sensation, the shriek of a klaxon on top of a wailing fire alarm – and no one else can hear it. You can’t focus, you can’t think, you can’t do anything except try to make it stop please make it stop-

The itch is kind of like that. Always there, low-level, in the background, but ignorable. And then it builds.

Sometimes it’s like an insect crawling over your skin, but there’s nothing there. Sometimes it’s like your skin is too tight. Sometimes the feeling comes from the inside out, like poison bubbling under your skin that you have to rip out. Now, a dull pulsing pain. Now, a light pain dancing from place to place. Now, a tickle. Now, a rough scraping against an open wound. Now, a ghost hovering millimetres above the surface of your skin.

It can feel like burning. A forest fire on your skin, blazing heat ripping across your body. Often it stings, like lemon squeezed on a paper cut. This kind of pain feels like a scream, high-pitched and ringing with aftershocks. Sometimes it feels like every nerve ending in your body has doubled, trebled, quadrupled, and the gentlest touch sends pain shooting through you.

It can make you feel like screaming. It can make you want to cry. It can make you writhe and flail and fight. It causes you to rip into your skin until you bleed. Any movement hurts. Any touch hurts. Even if you don’t move, even if nothing is touching you, it still hurts.

And it never, ever goes away.

(That answer ended up a lot longer than I intended. I’ve never claimed to be succinct.)

Isn’t there a cure?

Nope. Some people have success with certain treatments and can more or less get rid of it, but eczema is highly individual so another person won’t have the same reaction.

A lot of the most effective treatments also have some pretty dire side effects. I was on oral steroids for a few weeks in 2014, and my skin cleared up overnight. Pity that using them for longer could basically lead to organ failure. Yay. Phototherapy treatment (hospital-monitored UV light) works well for me, but long term risks include skin cancer. Yay. Chinese herbal medicine works for some people, but also comes with the risk of severe liver damage. Yay. The list goes on.

How do you do it? I couldn’t cope like you do!

Yes you could. If you had to, you could. That’s how we do it. Any chronic-illness sufferer gets through it because they have no choice. It’s amazing what you can push yourself through when it’s your only option. Short-term illnesses allow you to hole up in bed and avoid interacting with the world; chronic illnesses do not. Whether you like it or not, you have to live. You have to go to the supermarket. You have to go to the bank. You have to get through work, or school. You have to look after kids, if you have them. You have to get around. Some days it’s harder than others, and on those days you may cut back on anything non-essential, but you still have to exist.

This all sounds awful – what can I do to help?

Be understanding and patient.

Depending on the situation, I may feel unable to do what I need to do. I highly appreciate it when friends or family ask if I want to step outside, if I want to leave, if I need something to cool me down, if I need to go deal with my skin.

If my skin is bad enough that I seem upset and/or distracted, talk at me without expecting a response. If it’s not quite that bad but still clearly causing pain, engage me in conversation.

If my skin looks good, TELL ME. I am super paranoid about how I look at all times, so if someone mentions that my skin looks good I will be on cloud nine for days.

blossom1
NO FILTER!!!

But never do the opposite – don’t mention I look bad, or red, or in pain, or anything like that. If it looks bad, I already know – please don’t remind me that everyone else knows as well.

Don’t invite me to things that are: at the last minute; in a hot environment; hours-long without a chance to deal with my skin. I will say no, and feel guilty, and probably make up a lie to explain why I can’t come. If you give me at least a couple of days warning, I can plan my day around the plans to make sure my skin is dealt with.


Like this post? Read other eczema post here!

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3 thoughts on “Eczema Week: FAQ

  1. ines cano uribe

    Thank you Adelaide for sharing this. This is sooo true and I can sympathise with you on every single point as I see my son suffer with that. Keep sharing!

    Like

    1. Thank you so much for your kind comment! I’m so glad that my words are resonating with people – I know I’ve felt very alone at times. It’s a difficult journey, but one that doesn’t have to be travelled alone.

      Like

  2. Pingback: Eczema Prevention: Workout Without Worry | Ines Cano Uribe

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