So here’s the thing. Ichthyosis is socially and medically challenging. I don’t like to complain about it. But that’s the reality of it. It is a bitch to live with. After a minor catastrophe today, I got to thinking…it really is an inconvenient condition.
I was doing my washing today. In Melbourne, it’s cold and drizzly – not really washing-drying weather. I have been hanging it up on my clothes horse near the heater. My washing machine stopped before the rinse/drain cycle. So I switched the machine off, and set it to the rinse/drain cycle only. It finished, the door opened, and then I hung my washing up.
I thought my washing machine may be suffering from vaseline/skin build up, so I shook some bi-carb in the barrel and set it on a quick cycle. Only this time, when it stopped mid cycle, the machine would not turn off. I had a look at the manual. It seemed my filter was blocked, so I opened it. Whoosh! A flood of water all over. I swore and cried a little.
My $1400 four month old washing machine may be broken. Fuck. I shall call the company tomorrow. It is under warranty. It was $1400. My return trip to America was $1600…
My previous machine lasted less than four years and five seals and then it had to go.
Other than the washing machine here are the other inconveniences of Ichthyosis. I don’t care if these gross you out. I’m the one that has to live with them.
- Skin everywhere. On my carpets, in my bed, on my walls after combing my hair, in the speaker and earpiece bits of my phones, in my keyboard, at work, on my clothes, on other people – eek. It looks a bit like mysterious white powder. Sometimes I try and see whether the bigger pieces resemble countries.
- Vaseline everywhere. See above. Particularly difficult when it’s on doorknobs and tiles. And washing machines. It’s also a particularly obvious pash-rash on the bloke you’ve been kissing, particularly if he’s prone to a bit of acne.
- The cost. It’s around $35 a prescription now. I get 10 kg of customised liquid paraffin/soft-white paraffin (which I refer to as Vaseline, because you’re familiar with that, and it doesn’t seem like I am fueling a hot air balloon, yep) and this lasts around three weeks. When I go overseas, I will need to take 20 kg of the slippery stuff and may have to get it over two scripts. Then there’s the antiobiotics, shower and bath stuff and shampoo that is not just off the shelf, antihisthamines, pain killers and bandages. That’s a lot of money. There are other products I could use, but I simply can’t afford to. There needs to be better financial support for people with chronic illnesses who work full time. A health care card would be nice. I’m talking to YOU, Australian Government.
- The temperature thing. I am usually cold. Even on warm days. And when it’s over 30 degrees, I can’t cope. I get a few people being judgey about my temperature. “But you’re ALWAYS cold, your thermostat is silly”. Yes, yes it is. But I can’t help for it. It is particularly difficult when people want to sit outside and I am too hot or too cold for it, or it is too sunny or windy for me. And it’s very difficult being in the company of a menopausal woman. She just wants the window open and the aircon on ALL THE TIME. Not ageist, just writing from experience.
- Not having eyebrows and eyelashes. Other than the lack of framing of my face (and this beautiful face ought to be framed) a lack of brows and lashes means that lots of stuff gets in my eyes. Dust. Hair. Dirt. On the upside, I don’t have ANY body hair, and I save a bit on beautician stuff. Win. Ish.
- The pain. When it hurts to stand, sit, have blankets on, when my legs are hit by my shopping bags or someone else’s body or belongings, when I bump into things, when I accidentally scratch myself so I bleed, when someone else accidentally scratches me. The pain… And the time off work because of the pain.
- The time it takes to get ready. I have cut down my preparation time a great deal. I can get ready in half an hour now. But it I want to look really fabulous, it takes time. There’s the showering, washing face, putting cream on my whole body, walking around naked a bit til it soaks in, patting the excess off, getting dressed (sometimes carefully), combing scale from scalp, doing hair, smoothing Vaseline on face… Sometimes I will get ready in the early afternoon so I am less red for going out at night. I was listening to an interview with a man who has a similar condition, and he said it takes him three hours to get ready. If he has to be ready for a 9 am appointment, he will get up at 4.30 am! NOW THAT’S INCONVENIENT and a lot of time taken to get ready, and he’s not even a woman!
- The whole looking different thing. Think of the time when you walked out of the house with your skirt tucked into your undies, or got a particularly bad case of sunburn. Or when you dated a Really Attractive Person. The sniggers. The questions. The turns of the head. The gaping jaws. That’s my life.
Look I’m not going going to be a sad sack.I’m not asking for sympathy. But sometimes days are really shitty. Like today. Fingers crossed the washing machine is fixed soon and without cost. Though I guess it’s really lucky that I have enough clothes to see me through an apocalypse.
PS: May is Ichthyosis Awareness Month. The Foundation of Ichthyosis and Related Skin Types (FIRST) is doing a great job in promoting it. Visit FIRST for more information.