Saturday, 17 September 2016

Adult Eczema: My Story part 2

It's been nearly three years since I wrote this post on my journey with eczema so far and as it's National Eczema Week this week I thought it was high time for an update!

Shortly after I wrote that post, I was referred by my GP to the dermatologist once again. I had just had a baby and my eczema had flared badly again. We were now living in a different area under a different NHS Trust so I thought it might be worth another go.

I was still living a dairy free life - something I was now well used to. However, when my eczema did flare up (normally triggered by an allergic reaction), I struggled to control it. My GP had once again sent me home with a myriad of creams without giving much information on how they should be used. In truth, despite being an eczema veteran, I still had no idea what I was doing!

So in Spring 2013 I trooped off to the dermatology consultant. This one man was by far the best medical professional I had ever seen. Finally, someone who showed empathy! Finally, someone who seemed willing to help! Finally, someone who gave me adequate information and other avenues of research that I could do for myself! In this appointment I actually cried - massive, sobbing, tears - because this man seemed to understand, he took me seriously, he actually looked at my skin, he listened to me and he said he could help me.

He said that my first port of call was for me to understand my condition myself. In nearly 30 years not one medical professional has provided me with any information or pointed me in the right direction so that I can take responsibility for my own care.

He not only asked what creams I was using, but he asked how I was using them. Turns out, I was using them wrong! He recommended some moisturisers that were actually nice to use (hello, Aveeno!) rather than sticky, gloopy moisturisers.

And he sent me away with a moisturising routine and a new list of creams to use.

I finally felt like I was getting somewhere!

It wasn't easy however. The consultant wanted me to moisturise all over, four times per day.

Now, I don't know what it's like for other people who, you know, live lives alongside their condition, but four times per day is pretty impractical (factor in the hour of sitting naked waiting for the creams to soak into your skin and it's pretty impossible!). But, with renewed enthusiasm, I was managing twice daily and within a week my skin had drastically improved.

Over the last three years since then, I've had some ups and downs.

I had full blood tests done and have no allergies apart from dust mites (though, dairy still triggers a reaction, go figure!).

I've recently had patch testing done and in terms of contact allergens, I'm only mildly allergic to local anaesthetics (probably should have told the dentist that recently!).

I still have allergic reactions.

I still have eczema flare ups.

But I can at least manage my own condition now. I've learnt to feel in control, knowing what my triggers are, rather than get hung up on what my medical records say (I challenge any doctor to feed me a pizza and then try and tell me that food and eczema are not related!).

I never saw that consultant again. Instead I would go back every six months and see the dermatology nurse. She was brilliant, always recommending new products I could try. Referring me for more allergy tests even though science was telling us that I wasn't allergic to anything.

And this week, she discharged me!

Part of me is frustrated that we never got to the bottom of the milk allergy. Part of me is pleased that all the tests are negative because it means that one day, if I'm brave, I might be able to reintroduce milk into my diet (bring me the profiteroles!). Part of me knows that allergies are not the area of expertise for the dermatology department anyway.

Part of me thinks that the medical professionals need to do more to assist eczema sufferers. Part of me knows that there really is nothing to be done as there is no cure.

But I'm glad I've been on this journey. My eczema has never been better. It's still there, it still affects my daily life, but it's managed and I don't feel self conscious about it like I used to.

I hope that one day there will be a cure, but in the mean time, it's about knowing your triggers, knowing what helps, and knowing how to treat it.

So, in case any of this rings true for you (and I know this post will reach fellow eczema sufferers as my previous post is my all-time most popular post!), here's mine:

My Triggers
~ Milk products
~ Stress
~ Cleaning products
~ Dust
~ Damp or humid conditions

What Helps
~ Pregnancy and breastfeeding (love those hormones!)
~ A thorough moisturising routine even when it's good
~ Showering to rid the skin of dead skin cells (then moisturising!)
~ Changing bed sheets really regularly and hoovering the mattress
~ Avoiding the triggers
~ Sunshine!

How to treat it
~ Moisturise! Moisturise! Moisturise!
~ Steroid creams (always moisturise the area before applying)
~ Keep an eye out for infection of open sores - no amount of moisturising is going to clear up infected skin.

My Advice
~ Keep going back to your GP or dermatologist until you're satisfied that you have received effective treatment and advice.

~ Force them to look at my skin. I've been to numerous appointments where I've talked about how I'm doing but I haven't actually showed them my skin and the medical professional hasn't asked to see it. Remember, my idea of a 'good day', might be entirely different to a medical 'good day' so even if you think it's good in comparison to what you're used to, show them anyway.

~ Be bold enough to ask the right questions. If I felt like I was just being fobbed off or like the consultant's appointments weren't serving a purpose I would politely say "I feel like I don't understand what the purpose of this is, what are we aiming for?" They're then forced to say something like "We need to help you manage your condition because there isn't a cure", which is then your opportunity to outline how you don't know what you're doing! 

~ Get support. There is a huge psychological, emotional and practical impact to living with eczema. Be honest with your GP, family and close friends about how you're feeling - remember stress is a trigger so anything your family can do to support you or help out around the house (allowing you to avoid cleaning products!) is an appreciated bonus!

To find out more about eczema and National Eczema Week, visit The National Eczema Society.

Coming up this week, I'll be talking about the psychological and emotional impact of being an eczema sufferer as well as showing you the skin care products that have helped my condition. Stay tuned!

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