Ichthyosis and self care

One of the things I noticed during Ichthyosis Awareness Month, and also when staying with friends affected by Ichthyosis, is the amount of (and differing) time it take to care for the skin. There is a lot involved, and often a lot of stuff to carry. I especially noticed DeDe's commitment to caring for Evan - it's a big job. I thought back to my parents' experience with me, and I also received a question on my Facebook page about self care.

Denise asked:

"how old were you when you could look after your own skin?"

Great question Denise! For a long time it was my parents (mostly my Mum) who cared for my skin. They bathed me, washed my face, put cream on my body, combed my scalp, did my hair. This really made me comfortable. But it was quite time consuming for my parents, especially when they worked full time, kept house and garden, had pets and cooked.

I'd have nightly baths and my face was washed when I woke up in the morning. Mum washed my face with plain warm water and a facewasher (cloth). She would add either salt and olive oil, or bath wash to my bath. (Now I still put salt and oil in the bath, and occasionally have a bleach bath or MooGoo bubbles, but it is rare I have a bath as an adult. It's usually for treatment when I'm sore, not enjoyment.)

I had baths for many years - I'd rarely have a shower because I hated getting the water and soap in my eyes. But when I switched to showers, my life changed! It meant I could wash my whole body and feel really clean. I much prefer showers to baths now. On primary school camps I remember having a shower with my Mum so she could help me wash.

I reckon I was able to have night baths on my own when I was about 10, but Mum would still wash my face in the morning until I was about 13 or 14. It was really hard to wash my face in the morning - getting the dry skin off is hard as the skin is not pliable. It was especially hard when I'd scratched my face overnight and my face was bloody. It was so sore.

I was 13 or 14 when I started to have a shower, putting cream on prior, and the steam from the hot water would help to remove it easier. This is my morning routine now - get up, put cream on my face, have a shower, put cream on. I have a shower at the end of the day too - mostly at 6.15 as I find the cream soaks into my skin better before bed. I hate being in bed with really oily skin.

I used to use sorbolene cream but it left my face too dry, and very white, so I was prescribed a paraffin mix age nine or so. I think I was putting cream on my body on my own from about 8. I don't remember applying it myself at primary school - I guess my skin just went dry. Now I hear kids with Ichthyosis have aides who do help them, but this didn't happen when I was at school, and I was just too embarrassed to do it myself.

Every night and on Saturday mornings until I was about 16, Mum would sit down on the floor and I would lie on her lap. She would comb the scale out of my hair and remove the skin from my ears after a bath. This time was not only medically beneficial, but we debriefed after my day at school. We would make up stories together and I would also tell her if things were good or bad at school. My scalp is always cold after it's combed free of skin, and if we went out on a cold Saturday morning, my scalp would be so cold. Mum would get annoyed at me for complaining - but she didn't understand how much heat I lost then. I guess I wasn't able to articulate it properly. Again, my life has changed since I could explain how I felt. (I will let you in on a secret - when I go home I still ask her to comb my scalp because it feels good!)

Mum learnt to do wet dressings at home. The nurses and her taught me too. This meant fewer hospital stays. I now do salt dressings at home when I am sore - and I even did them in Paris with some posh French salt, a saucepan of water and some chux cloths.

The turning point was when I mastered my self care and knew how much pressure to apply to my face and body, took as long as I wanted in the bath and shower, and applied my cream through the day. It made me feel more comfortable. I make sure my face and body are smooth of flaky skin. I don't scrub, I just use a facewasher and plain water to wash my face in the shower, and the same facewasher and body wash to wash my body, and then dry myself off and put cream on. Taking the time to do this makes me feel and look better. I can move easier and don't dry out through the day. That photo above was taken in New York. I had more time to get ready because I was on holidays and it was cool so my face was clearer. There's a little lipstick on my lips, and an Instagram filter, but I was pleased with how smooth and clear my skin was that day.

My self care as an adult is second nature, and while I'm in a good routine now, I can afford to be flexible if I have to stay late at work or go out late at night. Sometimes I get ready for a big event really early so I will be comfortable, my cream will soak in and my face will be paler.

I don't like changing my routine too much - especially the cream I used. I tried Aquaphor overseas and it just didn't adhere as well as my own mix of paraffin.

You know, that's maybe the first time I've admitted to my self care routine as a child and teen because I was always embarrassed over the amount of time it took and the lack of independence I perceived to have. What other kid's mother was washing their face in the morning?

But now my shower cream routine can be as quick as 20 minutes total!! I have got it down from an hour to about 30 minutes for a comfortable wash and cream. I've even been using makeup now - a little lipstick and some nailpolish. It really is amazing what a good routine of self care can do.

(The products I use for my skin can be found here and here. Please talk to your dermatologist before trying them. Note that some of the products are only available in Australia but you may be able to get equivalent in your country.)