Over the years you learn to cope with eczema. You know you’ll never be quite free but once you can get a handle on keeping your skin moisturised and avoiding the things that trigger flare ups it gets easier.
Some people do grow out of it but sadly that is not the fate for all of us. Some people have cyclical flare ups which seems to be the route I’m taking. I have no idea what happens to trigger the flare up. It isn’t always bad diet, late nights and over indulging, as you might imagine. Sometimes it’s just time. It’s time your skin gave you a good kicking.
I’ll try to explain to you what an eczema flare up is like. It starts slowly. You get a few dry itchy patches so you moisturise and use a bit of steroid cream if you have any. If you’ve had a good spell with clear skin chances are you’ll have run out of steroids completely. If you’re lucky you’ll have some manky, rusty, twisted leaky old tubes that have seen better days and run out just at that crucial moment.
It seems very hard to stay organised. Steriods are no longer left on your repeat prescription. You can only get them now if you visit your doctor or phone up to request them, and you need a good reason. It isn’t good enough just to say you’ve run out and would like to stock up your first aid box in case of a flare up. Oh no! You must now wait until such time as you really need it, but perhaps not wait quite as long as I do.
Night time is the worst. The pattern begins… you try not to scratch, give in, scratch, wake yourself up, scratch some more, get up to put on more moisturiser, itch more, scratch more, wake up finally dead to the world and feeling disgusting, slimy and gross. Tight, sore itchy skin that needs a soak in an oil bath but there is never time. So a shower and then more oily horrible ointment so you can move the sore skin. Sometimes it splits when you move. You can’t wear nice clothes or white clothes because the blood will show through. So then you get scabs the colour of your latest top. Purple today. Where the weeping sores pick up fibres from the clothes and a scab forms. Your hair is permanently greasy where your hands have pushed it back with greasy ointment traces. Nice!
It’s not nice. It’s painful, frustrating and stressful. I get by on a concoction of pain killers, antihistamines, vitamins and minerals and omega oil supplements in the vain hope that my skin will realise it’s getting some goodness. I drink plenty of water and try to get plenty of sleep, keep the eczema clean and moisturised but sometimes it decides it’s here to stay for longer than I planned for!
I often forget what it’s like for my husband to live with me when eczema strikes. When I’m good I’m very very good, but when I’m bad I’m horrid! If I’m not sleeping, neither is he. If I’m in pain and upset, he is usually the one who gets the brunt of my sharp tongue. Through thick and thin he is there for me though. He rarely complains and supports me as much as he can, short of organising a skin transplant. When he asks me, “What can I do to help?” and I demand, “New skin please, NOW! Like yours please but minus the bristles.” He will laugh, hug me and it is a bit better, but I know noone can change my atopic skin.
This morning when I found myself in tears, a hug from my husband helped, and he tells me to ring the doctor and make an appointment. Strange that I can’t get to that solution on my own. I never want to give in, think I can cope on my own and don’t want to worry the doctors.
I never learn. I always wait, leave it, try to cope, try to keep going, until I am literally on my knees with exhaustion, pain and frustration. These flare-ups seem to come to visit every six months or so and I just cannot cope without the intervention of steroid ointments. Winter does seem to be a common time when eczema gets worse. Whether that’s the cold weather, central heating or just pure coincidence, doesn’t really matter, but the dreary weather never helps the dark moods that come with it.
Well today I came home with a stern lecture from the doctor that my skin is far too dry, not to leave it so long before getting treatment, and a potential referral for further help. What I’m really pleased with though is the big paper bag of different steroids, emollients and antihistamines and whether it’s the placebo effect or just some sympathy from someone who was shocked at how bad my skin was and how raw, red, tight and sore – who cares! One application of steroids and I already feel ten times more positive, calmer and less in pain. Could just one application really start to make a difference that fast? Or is 50% of this battle that I am not making a fuss, this is really bad and that I only have to ask for some help…
I am telling myself I won’t let my skin get so ravaged and damaged again before seeking help. I’m pretty sure I will though, it seems the memory fades and living with eczema you get used to ignoring the itch and using natural things to try to keep it at bay. Allergies too don’t help. Often a mild reaction to a trace of an allergen will cause itchy skin and hives. If I can ignore it sometimes the lumps will recede fairly quickly without too much discomfort. Sometimes though it’s not allergies, it’s just eczema, an unwelcome guest who never announces his arrival, nor books to stay, just turns up unannounced and always outstays his welcome. Sorry boys but eczema is a man!
Sometimes oil baths, tea tree oil and aloe vera are just not quite enough. I have no idea why the flare-ups take hold, when at other times they fade and heal.
So I thought I’d share my sad little story. I talk about the allergies easily and a lot since they are so often life threatening and frightening, but I rarely talk about the eczema. Eczema is not life threatening. It’s just common old boring eczema. It’s not exciting and scary like allergies. It doesn’t need to be taken so seriously… or does it?
I find the eczema is pretty disgusting. It repulses me. I hate it. I’m ashamed of it. I feel dirty, the emollients make this worse. I feel in some way I am to blame that it comes, and it looks so horrid and it feels pretty awful. I get eczema all over too. I can’t hide it, though I can hide some of it. The worst of it gets my forehead, cheeks and neck. The eyelids take a bit of a battering too. I look pretty dreadful and generally become a bit of a recluse when these hard times hit. This just compounds the general feeling of depression and frustration. Add to this that I cannot exercise because this on bad eczema is like pouring acid into the sores. Sweat and eczema do not mix. But with no exercise you just feel worse, more isolated and more grumpy. If you can get yourself moving, even just for a walk it will help, exercise is so important but also, for the person with eczema, can be so painful.
I become paranoid that some allergen is invading my house. I am frightened to touch anything. Don’t want to eat anything in case it’s food making me so sore. I even cringe from be hugged because it hurts to be touched when really, a hug is just what I need, even if it’s a gentle one and not a painful bear hug.
Today eczema is packing its bags and let’s hope it’s gone for some time because quite frankly me and my husband could do with a good nights sleep.
So for now the rant is over and I thought I’d share a few eczema tips, though after reading this I wouldn’t blame for not taking them seriously! Clearly I’m not quite on top of this baby! But I’ll try anyway. I have learned quite a few things that both soothe and help heal and cheer me up.
- Have a supply of steriods for emergencies! Don’t wait till it’s too late, till you’re not sleeping and in agony. It’s not worth it. People go to the doctors with a tiny blemish so never feel bad about going with painful eczema, especially if you think it might be infected. The general rule is that you should use a strip of steroid the length of the distance from the tip of your finger to the first join or bend in the finger to cover an area the size of the palm of your hand.
- Keep moisturised! – this is so key. Once the skin is dry it’s so much more easy for eczema to get worse. The eczema you can see actually Goes much deeper into the skin. It’s not just on the surface. Twice a day is imperative but if you change clothes or have the time and space, more often will help if it’s really bad.
- Treat eczema immediately – with steroids but use sparingly, and because it can go deep into the epidermis, keep treating with smaller amounts and less frequently even after it looks like it’s gone, because it can flare right back up again if it’s not quite gone. Reduce the strength of steroid as you reduce the treatment.
- What’s worse? Thickened eczematous skin or using steroids? – you might think using steroids is bad, and it’s true that over-use can thin your skin. I would argue though that continued scratching and thickening of the skin is just as bad and far worse for your state of mind, well being etc.
- Get plenty of rest – early nights will work wonders. Once your skin starts to heal getting enough sleep will really help the rejuvination process.
- Have a warm oil bath – Too hot is not supposed to be good, but sometimes I find just the opposite. I use diprobath with a few drops of healing tea tree oil. When you get out of the bath, put baby oil onto your wet skin. This will seal in even more moisture. I’ve also been trying Epsom Salt baths which are also really soothing and help promote healing, my skin always feel better after a salt bath.
- Stay hydrated – Drink plenty of water, herbal tea, especially green, rooibosh, dandelion and fennel.
- Try not to touch your skin – This is very easy to say, but it’s key. The itch is persistent but if you can sit on your hands, wear cotton gloves, anything to try to break that habit. The less you touch your skin the better. I often find mine improves when I spend a day gardening for instance, when my hands are filthy or clad in filthy gloves, I don’t touch my skin because of this and as long as I always wash after gardening it can really help. I MUST leap in the shower straight away because otherwise stuff from the garden seems to irritate me when I DO start touching my skin and then you’re off again with another reaction. Get the book, The Eczema Solution by Sue Armstong-Brown, it didn’t cure mine but it DID help me realise just how often I scratch and that many times it’s a habit and not an easy one to break.
- Oily fish and omega 3 – supplements such as fish oil, evening primrose and borage can only help restore the elasticity to your skin. Make sure your diet is full of vitamins and minerals. Zinc, calcium, vitamin E and selenium are also good for your skin.
- Stay positive – keep smiling. Not easy in the face of an attack on your skin. Remember there is always someone worse off. Eczema is pretty horrible but there are far worse things you can have. Imagine your skin healthy, smooth and fresh. Wish hard enough and click your heals. Together, after three? One, two, three… see! I made you smile.
- Tell people how you feel – don’t suffer in silence. Explain how you feel to your family and friends, tell them you’re suffering and need some slack, help, just a cuddle. Explain to your boss at work and colleagues, most people will see you are struggling and be compassionate and understanding. If they don’t then they’re not worth bothering with.
- Demand help from your doctor – Never just accept eczema as the norm. It’s not normal and it’s not something anyone should have to live with. If yours is really bad you need to nag your doctor till you’re blue in the face, make them refer you to a specialist dermatologist or allergy specialist if you think allergies may be playing a part. Don’t settle for pain, suffering and isolation. Fight for your health so you can get on with life. I believe there are always things you can do to help your situation – just being told you have eczema and probably will never grow out of it now does not help. Don’t let your doctor fob you off just because he doesn’t understand. It’s not good enough. I have been in tears begging before mine has referred me but I got there in the end.
- Join forums like the Talk Health eczema forum and the Eczema society – Remember, you’re not alone. Having a moan on a forum or better still, helping someone else out, will really make you feel more positive. Click here to find out more about The Eczema Society.
- Finger nails can do untold damage – One last thing that has just struck me that I forgot to mention is that I try to keep my nails short and filed smooth with no sharp edges when my skin isn’t that healthy. It’s shocking what finger nails can do in the night. It only takes one second to create great gouges trying to get to the itch which is never satiated. Horribly the pain of torn skin can be better than the itch, but only till it starts healing and itching, and so the cycle continues…
- Be kind to yourself – If you are really struggling, take some time out. Don’t fight on, saying yes, going out, doing this and that and trying to keep going. If you really feel rough, exhausted and at the end of your tether you need some time out. Do something you really enjoy, sit in the sun (when there is any) for ten to twenty minutes, then seek shade, read a book, go for a walk, ring a friend, watch a good film. Be good to yourself and take time to recover.
- Stay cool – heat can really irritate eczema. Make sure you bed especially is cool, not hot and stuffy. Ventilate the room, put the sheets and bedding back to air them in the morning to hinder dust mite growth. Make sure you have the right kind of bedding for your skin, especially if dust is a skin irritant. Think about mattress, duvet and pillow covers to keep dust mites away from your skin and wash bedding at 60 degrees to kill all dust mites.
- Skin care and cosmetics – be aware of what you put onto eczematous skin, many skin care and cosmetic products can contain skin irritants which can in turn trigger eczema in people with sensitive skin. Always read labels and stick to simple, natural products that are for sensisitive skin and test on a small area before slathering on all over. Avoid all makeup and products you’re not sure of when you’re having an eczema flare up, allow skin to heal and calm before trying new products or irritating it further.
- Know your triggers – Keeping your skin healthy is really important when air borne triggers can also play a part. If you have hayfever or a dust allergy for instance, this can affect the skin far more severely if eczema is not under control, and it can also trigger hives, itching and so, a flare up. Understand what triggers your skin to ‘wake up’ and start itching, keep it healthy and you also protect it from some of the hay fever onslaught. (Special thanks for LRollins on Twitter for this tip)
- Cotton and natural fibres are best – avoid man made synthetic clothing on your skin when it’s bad. Wear 100% cotton, silk thermals and pure merino wool in winter. Some people find removing itchy labels and wearing clothes inside out so the seams don’t rub also help.
- Smile – stay positive no matter what. The power of the smile can work wonders. Even when you feel really rubbish you probably don’t look as bad as you think you do. So smile. Even when it hurts to. I will make you feel better and others smile back at you. Positive thinking rules.
Well, this was a fairly miserable, sad, ranty blog post. But sometimes things get hard. If you ever want a moan or have a question, come along to what allergy and we’ll do our best to either help, find someone who can, or make you laugh.
10 eczema secrets your doctor won’t tell you
And finally, here is a totally free pdf ebook with ten things your doctors won’t tell you about eczema, they are all really simply practical things that could just make a difference.
I’ve read it and it’s packed with ten really useful things everyone with eczema should know and it’s true – not one of them has ever been mentioned to me by a doctor…
It’s really interesting and anyone struggling with eczema flare-ups should consider reading it.
It’s free too so what’s stopping you? You never know, it might just help you to cope a little better.
How’s your eczema? Good? Bad? Gone for good? What do you find some useful tips on here to help keep yours at bay?