This week is National Eczema Week (14th September – 22nd September). To mark the occasion I will be posting a series of posts every day of the week, either from myself or from my partner Jenny. First up is both parts of Jenny’s ‘Living with Eczema’ posts where she talks about how much her condition affects her day to day life.
Living with Eczema
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.
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.