So, I’ve been meaning to write this for a long, long time. In fact, I had half a draft done over a year ago for my previous blog, but decided not to post it. A couple of months ago, I saw someone else post a similar blog (apologies, I can’t remember where I read it) and it reminded me of the draft I had. I’m not going to use the draft (it’s too hard to keep going on something from so long ago), but instead go from scratch…no pun intended. I feel like while the disease is fairly well known, people don’t know much about it, or what it’s suffers go through…usually in silence.
So, I’ve had eczema and psoriasis my whole life. My baby photos are full of angry red cheeks and being covered from the neck down so my skin wasn’t exposed to sharp little nails. The soundtrack to my childhood is my parents carolling “don’t scratch!”. I’ve always been self-conscious to the point where I just saw that as normal. After all, any kid with yucky red rashes everywhere is going to want to hide it away, and get embarrassed when other kids ask questions about it.
There are good days and bad days, which then lead on to good months and bad ones. A large portion of my childhood was full of “bad months”…or maybe they just stand out more strongly than the good ones. Along with the horrible rashes that would appear in random places all over my body, I’d also get this thick horrible flaky skin behind my ears (the psoriasis part of my skin issues). This was something I lived with throughout my childhood in varying degrees. I remember the first time it had completely cleared. I was maybe 12. I remember thinking that this smoothness, this clean feeling is what everyone else takes for granted. I never had that. Instead I had flaky shirts, weird looks and sometimes a gross smell coming from my ears. It didn’t matter how hard I scrubbed, or what cream I used, it was always there. I remember in year 7, a guy I didn’t get on with asked me about them halfway through class one day. At first I thought he was just being his normal asshole self, but he apologised and said he didn’t mean to be rude, he just really wanted to know. So I told him. I don’t know whether he understood, or even cared. At least he asked, instead of just giving me weird looks.
For a large amount of my youth, I’d have rashes in all the common areas – in the elbow and knee bends, my face, my back. Thankfully I’ve never gotten it on my hands or feet (I couldn’t think of much worse). I’ve used just about every over the counter option there is. In my childhood, my go-to cream was DermAid, but eventually mum stopped buying it as it was found to strip away layers of skin or something and eventually made them weaker. I’d get mum to lather me up with moisturising cream before school each day, and after showers. After showers was especially important, as my skin would feel horrible and sore and tight if I didn’t do it, particularly my face. I’d go through tubs of the stuff each month, and it still wasn’t enough to keep the blotches away.
The last couple of years have been okay, for the most part. I finally started to outgrow it, and I suppose manage it better. I think it is probably about 50/50. I had my worse breakout in a very long time about a year and a half ago. I’m used to rashes (as you can tell) so for a long time I put up with it, tried to fix it with moisturisers and the occasional tube of steriod cream I could wrangle out of a doctor (the only almost-certain way of fixing stubborn eczema). They never ever give enough though, and once it runs out, it comes back. In the end, it got so bad it was thick and extremely painful and it basically went from my neck all the way down my torso, stopping at my hands and feet. It hurt to move, as it would dry out almost immediately after putting cream on. I went to my boss in tears, telling him I just couldn’t wear the uniform shirt as it was scratchy material and making it all worse. He told me to go and buy something to wear underneath it immediately. I was extremely frustrated, as I felt like I should be able to control it after living with it for over twenty years. Instead, after months of pain and it not getting any better, I wound up sobbing in a doctor’s office, feeling completely overwhelmed and in so much pain I could hardly stand it. She immediately prescribed a large amount of steriod cream to start with, and sent me to see a specialist.
These are some of the pictures I took prior to going to the appointment (keep in mind, they might be a little hard to look at. If you feel squeamish looking at them, imagine living with it. They’re photos of my arms, legs and torso…apologies about the weird angles and undies shot, but I thought it was worth including as the pictures show more than I can explain in words.)
It’s probably a little weird I didn’t already have a specialist. I think when I was little, the GP mum used to take me to specalised in skin conditions and she trusted him, so I had no need to see one. By the time I moved out, it was starting to get better by itself, so I didn’t need one then either. I’m not sure what I expected from the specialist, but whatever it was, I didn’t get it from her. I walked in and we talked about why I was here. Then she got my to strip down to my underwear so she could see the damage…and judging by her face, the damage was bad. I mean, I knew it wasn’t good, but her job is skin conditions, so I wasn’t expecting her look of shock when she saw it. You’d think that’d mean she’d want to help…and maybe she did, I don’t know. All I know is, she asked me all of one lifestyle question – “do you have a dog?”, and when I answered yes, she blamed everything on that. Nevermind this flare up happened a year after I got her, nevermind I’d grown up with dogs, nevermind it could be a million other things, like diet, on sweat, or stress, or dust. It was, in her mind, caused 100% by the dog, and I was to leave her outside at all times. Yeah, like that would happen.
About the best thing she did is load me up with a prescription for an enormous amount of steriod creams in various forms. I still have heaps left over now, a year and a half later, and the cream does it job well. One thing I wish someone had told me (considering how many doctors I’ve been through, you’d think one of them might have mentioned it) is that if you use too much, it can actually effect your hormones. During the time where my skin was especially bad, I started spotting heavily for two weeks straight, and I’d only had my period two weeks before. I had no idea what was happening and whether I should be concerned. It was only when I woke up halfway through the night and realized what might be happening, that I googled it and confirmed it. Since then, I’ve tried to use it more sparingly, as it took at least a month for everything to get back on track.
So, I’ve gone through my story, but what’s it actually like?
Basically, on a bad day, you wake up with sore, tight skin. Maybe there’ll be rashes, maybe not. One of the perils of having skin like mine is that it’s dry all the time, and that can feel almost the same as having a rash sometimes.
If you do have a rash (and let’s say we’re smack in the middle of a flare up), you have to coat yourself in slimy, often-weird-smelling cream, feeling stingy and unclean.
You try to cover up the rash, but if it’s on your neck, or your arms, it’s tough. Forget scarves, as wool can drive you mental from it being so scratchy. Same goes with gloves. Oh and nylon? Dream on. If it’s not cotton, it’s not getting worn.
You try to get on with your day, but you can feel the moisture leeching away, and the rashes getting more painful. If you’re lucky, you get lost in an activity and forget it. If you aren’t, it’s all you can think of all day long.
The first thing you do when you get home is lather yourself up in more cream. Oh, sweet relief! Nothing feels as heavenly as moisturiser on skin that’s been painful all day.
Later on, you have to bathe. It’s not something you look forward to, as the water stings the rashes, and if they’re all over, it means you hurt all over. The golden rule is to have a shower as cold as you can manage…only I can’t handle cold showers. The heat only makes the rashes angrier later on.
You get out, towel off (pat dry, don’t wipe!) and once again, go through the gross routine of applying cream everywhere. You try not to miss anywhere, because in half an hour you’ll know about it if you do!
Then it’s bed time and you dread it. Firstly, the pain is often enough to wake you. If it doesn’t, you’re still likely to wake up with gouge marks all over from where you scratched yourself in your sleep. If you’re lucky, they won’t be on your face. If they are, you’ll look like you came second best in a catfight. The scratches are often much deeper than they would be if you scratched yourself when you were awake. I guess you don’t feel pain when you sleep scratch. Or maybe it’s just super itchy. Either way, they hurt like buggery, and take a long time to fully heal.
And this is your life every day until the creams start to work or until the flare up goes away on it’s own. On good days, where the rash is minimal or not there, you may only need to cream up once a day…and this is a good thing!
I have found a few tricks lately that have helped me. If you suffer along with me, these might be of interest to you to. Feel free to add your own tips in the comments!
- Fake nails really do help. I know this initially sounds ridiculous, but hear me out. Fake nails (when done correctly) are a lot more blunt than real nails. Blunt nails can’t scratch as hard, and don’t do as much damage. This is especially useful at night. Since getting fakies, I haven’t woken up with gouge marks once, purely because my nails physically can’t cause them any more. It also helps with flare ups as you can’t scratch the rashes and make them bleed.
- Bath over showers. I’ve started taking baths where possible instead of showers for two reasons – one, I can use QV Bath Oil (or Flare Up Oil) and soak in it. I used to use this as a kid and have recently welcomed it back into my life with open arms. The second is that it helps relive stress, which can definitely cause flare ups.
- Wash your hair less often. Now, I’m not sure if this helps a lot or a little, but recently I’ve trained my hair to last a week between washes, and my skin is doing pretty well. The chemicals in shampoos and conditioners run down your body as you wash them out, which can’t be good for sensitive skin. Plus, if you can train your hair to last longer between washes, it’s healthier for it too!
- If you’ve got a flaky scalp (which seems to go hand in hand with my skin conditions as it dries out), I use Neutrogena T-Gel. Again, something I’ve bought back from my childhood. It smells a little funky, but it works. Just keep in mind it can lead to your hair colour fading quicker if you dye it. I also really like Dove Shampoo and Conditioner, as it’s got moisturisers in it which can also help.
- Sleep in light clothing and with light bedding, if you’re a hot sleeper. Sweating can cause flare ups, and if you’re getting too hot at night, that’s 6-9 hours where sweat is present. If you do have a hot night (or after a work out, or any time you’re really sweaty really), try to rinse it off as soon as possible.
- Salt water can help fix rashes. This is something my parents swore by when I was little, and they’d often take me to my grandparents place just so they had an excuse to take me to the beach. Just keep in mind, the saying “rubbing salt in the wound” is accurate, and initially it hurts like nothing else. After the initial pain, though, it doesn’t hurt at all and can help clear up the redness.
- Try to keep bathing to a minimum. Now, I’m not saying go days without it, but just keep in mind that even a cool shower draws moisture out of the skin. I’d say try to aim for no more than one per day unless absolutely necessary.
I think that’s about all the tips and tricks I have. I’m super glad that right now, my skin is pretty good, save for a few little rashes on my tummy and some dry patches on my legs. I’ve been extra careful lately to catch rashes early, as I know in summer it’s easy for it to spread and get out of hand. Thank God for steriod creams, because they clear it up quick smart!
Have you suffered from a skin condition in the past? How’s it going?