21 October 2013

Things I haven't told you about my Ichthyosis.

I was chatting to Pip Lincolne and Alex Brooks (from Kidspot) at the world's best breakfast buffet (QT hotel on the Gold Coast) and somehow the conversation came to the funny things that happen because of my Ichthyosis. I think it was because I couldn't open a bottle or something - I had to ask someone to do it. Alex and Pip asked me what other funny things happen, I mentioned a few, and they wanted to see a blog posts with the real facts about Ichthyosis. So here are the things I haven't told you (aka the things that make me laugh).

1. I can't really open jars or bottles. I'm too slippery. I do have a jar opener which helps a lot. Sometimes I have great trouble opening a wine bottle and I need to pop down to my neighbours to ask them to open it. Usually I am in my pyjamas. Last month none of then neighbours in my block of flats were home and so I popped across the road, in my pyjamas, to ask a neighbour I'd never met before to open the bottle of wine. "Hi, my name is Carly, I live across the road and I'd really like you to help me open this wine please." It makes for a good introduction.

2. I may give a boy pash rash if he is prone to acne. Years ago, mum asked why the boy I'd been kissing's face had so much of my cream on it. He also broke out in acne. We were 18, ok.

3. My finger prints don't work. I had a difficult time scanning my finger prints at LAX (and an equally as difficult time maintaining patience after a long haul flight, being questioned by the Customs officer and my fingerprints not working on the scanner. "Just scan my retinas", I suggested.) I also have trouble with the biometric thumb drive that I use in my day job. I needed to get it changed to a password lock rather than a thumb print lock. I think it's because the skin peels off. Other people with Ichthyosis have said they also have trouble with finger print scans. And don't even get me started on the bomb squad at LAX.

4. Skin renewal leads to a breast lift. My skin renews very fast - while this sounds a little gross, it forms big patches over my body through the day and night, and the can get a little uncomfortable until I wash it off in the shower. Sometimes, when I take my bra off at the end of the day, my boobs are just a little perkier - they're being supported by that extra layer of skin. Ha!

5. You can tell when I get embarrassed, get a fright or tell a lie. I go white. The colour drains from my face - it's really obvious that I'm embarrassed, frightened or lying. One time when I worked at the department store, there was a thief, and I was asked - over the phone - to keep an eye on him in my department until the police came. A customer asked me if I was ok, he could see I'd gone white - and while I said yes, my face said otherwise. "Is there a thief in the store?", he asked. "No", I told him, but my face screamed yes!

6. I have little to no body hair. There's a tiny amount of hair on my legs - like less than half a centimetre - and when I was 13 and not supposed to be reading Dolly Magazine, I stole a new razor out of my Dad's collection in the bathroom and shaved this tiny bit off. It didn't hurt me, but there was really no need. And there's no body hair anywhere else. This is money saving and painless and I have avoided a beautician looking at my vagina. My friends have tried to explain what happens during a Brazilian wax, and I cant even. Related: I don't ever need a spray tan. I would really like some eyelashes though. Eyelashes are my dream body part.

7. Sleep heals. And pales my skin. I was quite sore recently and had the day off my day job to get some rest. Sleep really does help. My body felt far less sore (the throbbing had subsided) after a three hour sleep, and my face was very clear, paler even. Here's an image of my face that you'll rarely see. Bed head! (Note: there is an Instagram filter on that photo but it was the one that best matched the colour of my skin in the daylight own that day.)

There's always a funny side to this condition. And some positives too! Rachel and Jennifer over at Confetti Skin also wrote about the nice things about Ichthyosis recently.

What strange/funny/interesting things happen to your body because of your chronic illness or disability?

Do you have any superhero skills because of your chronic illness or disability?



  1. This was really cool to read! I don't know much about ichthyosis but it's always been floating in my general vicinity - I'm on a lot of the same drugs used for treatment (psoriatic arthritis).

    Not to be one of THOSE people, but have you ever been on remicade/infliximab? I know ichthyosis is one of the listed illnesses it treats.

    Anecdotally I didn't play sport all through high school - I told them it was because of the arthritis, but it was actually the psoriasis, since I had a big patch on the small of my back. Whenever I stretched or bent my back (i.e. everything in sport), the damn thing would crack open and bleed all over the place. Thanks for five years of chillin with the asthmatics, PA! *thumbs up*

  2. "...and I have avoided a beautician looking at my vagina..." You crack me up!!! Best line in a blog everrrrrr.

  3. That was interesting and funny. I love that you ran over the road to a stranger to open your wine! In your jammies!


  4. this was AWESOME to read and Im def a follower of your blog now. Thank you for posting this :)


  5. You could use that fingerprint thing for evil instead of good you know... x

  6. I work with teens with chronic illness in a Sydney hospital and the stories I hear them tell are always entertaining. Of course there is a mix of funny and serious, but I always love to sit and chat with them about their experiences. Sometimes you can't tell they have an illness but they always have stories, even if it's about trying to convince people they DO have an illness!

  7. Loved reading this Carly I think the way you share so much of yourself is inspiring!
    Also Bron has a point ;)

  8. That was really interesting Carly, especially the fingerprint and boob part. As for not having to wax, lucky you, except I'd be wanting eyebrows too xxx

  9. How interesting ... and if you ever decide to take up a life of crime ... you're good to go.
    Love this post :0)

  10. Great post - and you have a great line to always break the ice with strangers, getting them to open jam or wine for you! Dropping in from the Weekend Rewind.

  11. Hilarious, and lucky, about the lack of need of Brazilian. I used to get them all the time. I have some hilariously embarrassing stories from over the years. Seriously one of the most humiliating experiences to go through. These days I'm sans boyfriend so go au naturale. V.


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