My Eczema Story In Pick Me Up Magazine

Hey guys,

Just thought I'd let you know that I'm in the most recent issue of this week's 'Pick Me Up' magazine which came out yesterday. It's only 68p so grab a copy!

After having written the newsletter for Talkhealth last month I was approached by Pick Me Up to include my story in their magazine. A proud moment! Hopefully my condition will strike a chord with many other eczema sufferers all over the UK and in turn they may look into Topical Steroid Withdrawal if it is the next path they need to take.


*for obvious copyright reasons I'm only showing a small thumbnail of the magazine to show that I have been featured.

Adult Atopic Eczema

As an adult sufferer of severe chronic eczema it's often hard to feel accepted and to know that other people are suffering the exact same thing due to the fact that most people's view of eczema is only from knowing it in its mild form. From having that stand point, I find many people don't really understand just what people like myself are going through on a daily basis. I've had a number of people congratulate me on creating this blog because they have finally found someone who is going through the same thing as they are. This is of course great as it means that I've had people to chat about the various highs and lows, what medications to use, how they cope etc.

Of course we have fantastic resources such as the National Eczema Society to go to, but sometimes it's nice to know that real people understand your woes and your need to get better to fulfill what could be considered a normal life. Not only this, but I believe that being honest and open about conditions, like I have with including images of my skin on a daily basis, and divulging the facts of how I have been forced to adapt and cope is also helpful in spreading awareness and even to act as a hub of information for other sufferers to gain some form of solace from.

I find many websites and even health services are more aimed towards children with atopic eczema and what parents should be doing etc. Where are the websites and services for those who have adult eczema? Eczema that only became a severe form in adulthood? OK, I understand that as an adult I don't need creams to be applied and that kind of thing (well sometimes I do if it's somewhere I can't quite reach but I seem to be a lot more flexible now!) but I still suffer from the other associated things. I cry when it is too much to bare in terms of itchiness and soreness, I do get embarrassed about it when people stare and say things, I need to have many tasks performed for me in fear of exacerbating my condition and making it worse. When I'm in such a state I feel like an invalid. I need to be constantly reminded not to scratch and even have force used against me if I'm undergoing a mad scratching frenzy.

As an adult, I feel we need more support than ever. Being a child you're under the care of your parent who pays for you to live; they pay the bills, ensure food is on the table and all those sorts of things that a child wouldn't ever have to even contemplate because they are exempt from the grown up world. An adult with atopic eczema will have such a hard time, especially if others are misinformed of their condition. I have been very lucky that work understand to a degree that when I'm bad, I can't come in to work, but that doesn't mean that things like my end of year bonus and my sickness record aren't affected by my inability to go in to work. It's these little consequences that annoy me as generally I will find myself unable to work on the days that work falls, and by the time I've recovered enough it hasn't even been a week and so I lose out on sick pay. Money that is necessary to fund my existence.

You may be wondering why I haven't applied for benefits if this is the case. Well, in actual fact I have. But because Shane is working we aren't entitled to anything. We have to live in the house we live in because it is modern, clean and large enough to fit in our possessions. But houses like this come with a higher price tag which we frequently struggle with some months. Don't worry our bills are always paid on time but working in an overdraft every month isn't exactly ideal.

If I didn't have Shane to support me I'm not sure how I would cope and I know there are many sufferers out there who don't have partners to support them. It is for this reason I feel that adult eczema should be more recognised. As I've said before, eczema isn't always a little bit of itchy skin that can be remedied, it can be so much worse; a daily, weekly, monthly, yearly battle of trying to control and regulate. The skin is the bodies largest organ, so just take a moment to take in the fact that someone who is suffering quite literally from head to toe is going through a very tough time.

Giving Up Is For Life - Not Just For Lent

My friend Hannah found herself inspired by my blog and recently created her own to raise awareness to chronic illnesses in general, and to discuss her own conditions. You can find her here: http://theretiredbridgeburner.blogspot.co.uk/

She made a post yesterday talking about the things that she has had to give up doing or have restricted her from being able to do. Instead of writing a comment, I thought I would talk about things that have impacted my own life from having severe eczema.

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Socialising

This is one of the things that has affected me the most, and is especially bad during periods where I'm at my worst. It's also these times when you find out who your real friends are as when you're on your own for what feels seems like a constant basis you become incredibly lonely and this can be self destructive if you let it be. A simple "how are you today?" suffices, as although you know you'll probably not be alright, having someone asking means the world, as it means they're thinking about you.

Akin to this, when I am at my worst and unable to leave the house but have made plans for certain events, having to cancel can be excruciating. It causes worry on my behalf that I'm letting the other people down, which in turn makes me worse, but if I do go to these events when I am experiencing a flare I know that it will cost me days to repair myself again.

Since having become allergic to fur bearing animals this can also be difficult as well as it means I am unable to go to other people's houses for fear that I will suffer a severe allergic reaction. Many people don't seem to consider the idea that I may require hospitalisation if a reaction was to occur and so I tend to have to skip events or ask for a more neutral setting which can cause unnecessary stress on both parts. It's also a real shame because I love animals, especially cats :(

Exercising

I've never been big on exercise but having heat induced urticaria has made it so much worse. Even walking around can be difficult, especially if I need to go up a hill. (I'm looking at you Lincoln Steep Hill!) Even swimming, which I used to do a hell of a lot of as a child, is out of the question as the chlorine affects my skin something chronic. It actually feels as though I'm having acid chucked at me and the drying-out of the skin affect is tenfold. Not ideal.


Going to Gigs/ Festivals

This is another one that saddens me. I used to give my all, sing and dance along to my faves like a complete loon, often while getting drunk. This just can't happen any more. Gigs are such hot and sweaty environments as it is without adding extra annoyances to my skin. So nowadays I tend to be selective of the gigs I do attend. Not just because of the effects on my skin, but also the driving factor... I get so tired, not necessarily because of the medication I take, but because of the level of bad health I have anyway.

Festivals are also a complete no-go for me now. Or at least the camping side of them. I've been attending Bloodstock Open Air since 2006 with 3 of the years being bearably fine to not have a shower everyday. Since my eczema took hold I can't even go a single day without washing the build up of skin and such off my body. I was fortunate to find a cafe nearby that offered a shower, albeit a rather disgusting shower, but it was still a step up from the portable ones at the festival. The lady who worked in the cafe was completely understanding about my condition and allowed me to have my showers for free. She is a complete sweetheart and I always attempt to pay her a visit for a nice cooked breakfast!

It's not just the shower aspect that does me in, it's the heat and humidity of the tent that also messes me up and the fact that I can't stick to strict routines with my skin. I mean, it takes me hours to get ready when I'm bad anyway so to add all the festival factors into the mix just isn't possible.

I now stay in a hotel.

Intimacy

I find intimacy to play a huge part with my skin. The heat of another person, even just sharing a bed with me is often too much to bare. Luckily we now live in a large enough house that if I am having a bad turn, which seems to be at least once a week right now, then Shane has somewhere else to sleep.


Work

When I was younger I was pretty manic. I woke up at 6am every day, went to college for 9am, picking friends up on the way, where I did an intense Foundation Art course, finished at 4:30pm, and worked until 10pm most nights of the week. Now I'm lucky if I can get through a 6hr shift at work. It really saddens me that I'll probably never be able to carry out a full-time roll again as I'm not one to want to sit on my backside day in, day out. I want to be out there making my own pennies, getting the most from life... but it just isn't meant to be :(


What I Can Wear

Back in't day I used to be somewhat of a Goth. I used to frequent corsets and long floaty skirts, adorned in black and dark colours. I had black hair and a face full of make up. I miss that version of me. I was a shy girl but my clothes didn't say that at all. Ah well.

Nowadays, although I still have something of a penchant for black clothes I tend to avoid them unless I'm having a good skin day because the skin dandruff can be pretty damn embarrassing. I also find that I can't wear scarves or necklaces because they irritate my neck something chronic. Annoying because I have a massive collection of gorgeous necklaces that I just stare at in wonder and lust! I also have to avoid light or pastelly colours generally as these also highlight my condition which is annoying because they'd mask the dandruff!

I also can't wear much make-up any more. Liquid liner and eye shadows are certainly out of the question as they now cause burning and weeping of my eyelids. Foundation just clings to the flakes and exacerbates the situation so that is also a no-go plus I think it is better for the skin to breathe. Nowadays I will wear mascara, brow pencil and a teeny bit of eyeliner at the edges of my eyes, but even then sometimes I can't do that either.

Crafting

I absolutely love crafting. I have so many creative ideas that I'd love to carry out but can't. I have an entire room dedicated to crafts in the hope that one day I will be well enough to do stuff. When I am experiencing a flare up crafting tends to make it worse. Doesn't matter what I do, it just causes me to flare. So sad as I have dreams of creating a business fueled by handmade goodies... Definitely still just a dream :(

Cleaning

My dermatologist actually wrote me out a certificate last June to say that I am unable to carry out household cleaning. As you can imagine everyone has been wanting to photocopy that and put in their own name. But the things is, I would clean if I could. Hell, my first job was cleaning my school for nearly 3 years! My allergies to dust are so severe that it brings me out instantly. Recently I've had to stop hoovering because it has created more dust settlement.

Travelling

This one also takes it out of me probably due to the stress of the situation. It can take me days to recover. I'd love to go to America but I honestly don't know if I could do it without scratching myself to death by the time I got there. Similarly, hot countries are out of the question because of the heat induced urticaria. It often annoys me when people say they're dreaming of sun bathing on a beach in *please insert hot country of choice* because I know that would actually be my worst nightmare.

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Wow. This post ended up being incredibly more lengthy than was intended but hopefully it gives more of an understanding as to why I can't do certain things. If anyone needs more of an explanation I'm more than willing to give it. You can also see how my condition has completely warped my identity, who I was, and the steps I have had to take just to cope, and why I am how I am now.

If you're an eczema sufferer what things have you had to give up?

Living With Eczema: Part 2

The thing that people don't seem to realise with eczema is that it really can be so severe that it is classed as a disability.

In my individual case, my skin gets so sore and weepy that I can't put clothing on because it just makes it all the more worse, in both the sense of heat, and also because it irritates and dries out my skin further. When the skin weeps it often dries with fibres stuck inside it, which is not exactly helpful to the wounds to have a foreign body lodged within them. So I find my best way to deal with a bad flare is to just spend the day being naked. This itself causes a whole array of problems with health and safety and the fact that I cannot leave the house, or generally carry out day-to-day activities. Walking about can also be difficult if it is bad on the backs of my knees and bending down and such is even worse.

It isn't just because of the fact that I need to remain naked that it causes problems. When I am in such a bad state (you must have seen videos of little children on Youtube crying because of the itching and pain) I am going through the exact same thing. I am in torment because of the itching and pain as at the time there is just no escape, once it has you in its grips, it has you good. It means I am unable to summon the will or the physical ability to do anything because it has such a hold over me. Now for many people who simply say, just don't scratch, or whatever... it just isn't that simple at all.

From what I can assume, and from how others have described how they think it is, a lot of people have the belief that it must be similar to a rash, or insect bite where you can't stop scratching it. In a way yes, it is like this, but at the same time it's so much more complex. Firstly, the itch isn't confined to just one area, it spreads like wildfire all over your body. Secondly, their scratching usually won't cause deep gouges, scratch marks, weeping skin or scabs; it will just remain as a red rash.

The other thing people, friends, acquaintances, even close friends, do not realise is how long it will actually take for me to get up and ready. I know I touched on this briefly in Part 1 but I didn't go into its full extent as much as I intended to. A day where I know I will have work, for example a 5pm-9pm shift, will have me waking up at around 8am, showering and spending the entire day slathering myself in moisturiser just so I know I can be comfortable in my clothing. That is an entire day completely wasted because of my extremely necessary routines which is incredibly scary to think about.

Coming home from work is no different. As soon as I walk through the door I'm in the shower, spending a large amount of time just laying in the bath tub trying to relax myself. I then cover myself in moisturiser for the rest of the evening and turn in for bed. The next day is either usually spent carrying out the exact same routine, or as a recovery day, where I will spend the day trying to preen my skin to a comfortable state for work the following day.

It ain't a good way to live, but it's how I have to live unfortunately. The days where I have to quickly carry out my routine are the days where I definitely pay for it later on. I generally end up spending days and days trying to recover again.

So there you have it. Those who don't have eczema or a chronic illness may consider yourselves so lucky that you are able to work a full time job and balance your busy social and family life. I know that I took it all for granted at the times when I was well enough.

x

Living With Eczema: Part 1

As with any illness eczema can range from mild, moderate to severe but not many people seem to realise this. Here, I'd like to make a series of posts to talk about how eczema as a condition can be debilitating; making leading a "normal" life difficult.

I'll start off with my daily routine. It consists of waking up, often having to pry open swollen eyelids that have wept and become stuck together during the night, deciphering how much agony I'm in, and looking in the mirror to see the extent of the damage. The looking in the mirror part isn't the most constructive thing to do, but helps me to understand why I'm experiencing a certain amount of pain.

Next I'll pill pop some antihistamines and hop in the shower after I've slowly prised clothing, and even my hair, off my body that has become stuck to weeping sores. Depending on exactly how my skin is, a hot shower might be necessary to get rid of the stinging the water creates as it hits open sores from nightly scratching. Doctors always advise against this as hot water dries out the skin, but I find it helpful to give me some form of respite from the pain. It can take me hours just to shower when I'm in a bad way. Not just because of the pain or the worry of the pain, but because being as relaxed as I can be is beneficial for my skin. I find my only way to truly relax is to lay in the bath tub with the shower on my feet. Not exactly the best when the water bill needs paying, but I find bathing doesn't quite work for me.

After liberally applying Hydromol I get out and after getting dry enough, immediately slather my skin in white soft paraffin. It can take hours for the white soft paraffin to soak into my skin but I find that if I don't apply enough it just gets so sore and dry. Given the thickness of this ointment is a bit worrying that it still dries out my skin! If it's a particularly bad day I'll just whip out some Hydrocortisone, Eumovate or Betnovate steroid cream and even have to apply this to my face on a very regular basis. I haven't experienced any thinning of the skin per say, and have been doing this for more than 10 years.

On the days that my skin is so bad I often find that I can't actually get myself dressed because it is so sore, and covering myself up with clothing just exacerbates this. Instead I find I heal faster if I stay naked in a regulated temperature, applying white soft paraffin regularly throughout the day. Because I have to do this to cope, I find myself becoming increasingly lonely as I can't have visitors seeing me in this way. It also means that I am often off work ill due to my inability to get dressed, and the soreness would obviously prevent me from going.

Work have luckily been quite understanding and allow me to take shift swaps or holidays if I need it. This does however mean that I will never be able to withstand a full time job because I would require far too much time off. I'm happy with working short hours at one end of the week as the time around it allow for more recovery periods as it can take me hours and hours just to get myself ready to go somewhere.

I miss the days where I could get up at 8am, take a quick shower, or not even shower at all, just have a quick wash and be able to be ready to be somewhere for 9am. Nowadays I tend to wake up at 5:30/6am to ensure I can be ready for such a time. I envy those people who can just pop to the shop for some milk first thing in a morning, it just wouldn't be possible for me to do this. And it's such a simple thing. People take their quick routines for granted, not having to worry about the implications things can have on their health. I have to think about how I will dress that day not because of the weather, but what my skin dictates itself to feel most comfortable in.


I thought I'd also include this extract I wrote in an email to a friend when I was feeling particularly down as it gives an even better stand point:

"I just really am coming to the end of my tether with all this. One day I'll wake up and be absolutely fine, the next without warning I am so ill that I need emergency medical help. I'm not sure how much longer I can go on with this for. It impacts every single aspect of my life. Getting washed and dressed on a bad day can be one hell of a chore, not to mention time consuming and completely energy-zapping. Then there's work. No one wants an unreliable colleague, no matter how much they say they've got your back and wouldn't want to see you have to leave because you're a hard worker and you do a good job of it. But you're only a hard worker when you are well, that is the fine detail. My love life suffers greatly as well. Most days I can't even let Shane get close to me, or even to brush passed me accidently because it can trigger my skin to flare up, which sometimes means he will sleep downstairs, despite us having a king size bed because I just can't bare the extra warmth. I can't see my mum as often as I'd like because of my severe allergies to the animals. I can't even enjoy my hobbies any more because I'm allergic to textiles and of course, dust. Which in turn means, all my dreams and ambitions have had to come to a complete halt until my health improves, which seems ever unlikely with each passing day. I have to cancel so many plans and trips, which has meant losing many friends along the way as well.

I do try to keep optimistic with everything by being realistic but it is so terribly difficult when your illness defines you because there's no way you can bypass it. It can only be managed and coped with so much until you lose your motivation for everything, which I have done so many times now."

It's a tough life when the hard times take over.