06 May 2012

A hissy fit about the inconvenience of Ichthyosis.


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.

19 comments:

  1. Everyone needs to have a hissy fit about something every now and then.At least yours is a real inconvenience unlike a lot of us who take a lot of what we are and what we have for granted.Hope your evening is better.Big hugs xx

    ReplyDelete
    Replies
    1. Aww Deby, thank you so much. Your constant support does mean a lot, it's nice to know you're thinking of me.

      Delete
  2. Awe Carly. You're allowed to have a bf (bitch fit) about it if you want. Stupid washing machine!! I can't believe the petty things I complain about when you have to live with all that annoying prep everyday! And that's ridiculous the cost of your medication! Just because you work full time doesn't people can afford to spend a gazillions dollars in their medication. That's so unfair :( does private health cover some for you? I think you look like a spunk when you really dress up in your IG photos :) keep being positive miss! And don't forget you are definitely allowed to have that hissy fit every now & then! Xx

    ReplyDelete
    Replies
    1. Hey Zoe - private health is too complex, and being a public patient is really good as I see the top specialists at the public hospitals for free. Happy to pay my Medicare Levy for the service I get.
      I try to be positive and see the funny side :)

      Delete
  3. What? You're not eligible for a health care card Carly??That's unbelievable! And don't get me started on meds and scripts, that will lead me down the funding path and it aint pretty..Wish I could come around and do some washing for you. Hope tomorrow's a better day. Look after yourself x

    ReplyDelete
    Replies
    1. No, Kell. Can't get one. It isn't too bad, but the system isn't very fair. There is an assumption that being employed means people can afford all they need to help them stay healthy.

      Delete
  4. I don't know if this helps but I have a friend in the washing machine business who tells me it is a good idea to use a few tablespoons of citric acid in a cold water wash every few months to clean it out. Perhaps if you did this every so often it could help. You can buy citric acid as a powder in the baking section of the supermarket. And I hope things look better as the week goes on - sending you good thoughts over the blogosphere.

    ReplyDelete
    Replies
    1. Thanks for the tip. Once the washing machine is fixed - agghhh not till next Monday FFS - I will give it a go :)

      Delete
  5. I reckon you're fully entitled to have a bitch fit, as often as you need one. It helps get the stress out, and no one can accuse you of having no reason to bitch! It's disgraceful that the financial support for you isn't better.

    ReplyDelete
  6. Emily Doran
    I tried to leave a comment on your blog but it too was having a hissy fit! That's really crap about your washing machine, especially when you paid a LOT for it! I hope you get it fixed. You should absolutely be entitled to a health care card, it's not like you chose to have ichthyosis. It's not like taking the pill. That's a medication of choice. But apparently all the benefits come to those who take advantage of the system (I saw a LOT of that living in Darwin.). No one seems to get rewarded for being single and earning an income. If I ever came face to face with the PM that'd be first on my bitching agenda!

    While you didn't chose to have iichthyosis, it's good in way that you do, because reading your blog, you have a good handle on it all, and I wonder if other people who have ichthyosis have your ability to see what positives can come from it. And also you write about your experiences with good nature and humor. I think seeing the good in anything (or anyone) is a gift. I like that you do that :)

    Sorry I sounded like a bit of a hippie there....lol

    ReplyDelete
  7. Hey you best friend eva!!!!! Have your hissy fit, I have mine when my jeans don't fit!!! We are all entitled to have one now and then...YOU my dear are the most fashionable girl I know...and YOU know this to be true because I'm still jeolous of your conference outfit from LAST year!!!!!

    I only wish you a little less discomfort, and more understanding from people, which I think is happening from your honest account of your life and your blog...Love you xo

    ReplyDelete
  8. I think you are certainly entitled to your hissy fit.... And I'm glad to see that you're normal as you are ALWAYS so (sickeningly) positive!!! Although the post itself was a bit too funny to qualify as a real hissy fit! (Things need to be thrown about and broken!)

    I love playing 'the victim' and - although I already knew it - you remind me I have nothing to whinge about!

    Deb

    ReplyDelete
  9. Hissy fit away gorgeous!
    You're also teaching people about Ichthyosis and that means awareness so bring it on!

    ReplyDelete
    Replies
    1. Thank you so much Mishella - I give myself permission to hissyfit.

      Delete
  10. Thanks for sharing what life is like for you Carly. You're an amazing woman and I admire you greatly for all that achieve while having a chronic illness. Life sucks sometimes and it's good to have a hissy fit and let it all out. I'm glad that you don't feel that it's OK to act like everything is always A-OK for you.
    PS: didn't read like a pit party at all.

    ReplyDelete
  11. Hello everyone. thank you for your lovely kind words here, and for being able to see the stupid humour in this situation. I think it's great to have a laugh at the shitty situations. And I always remember that as long as I can get up and go to work and smile most days, things are ok :)

    ReplyDelete
  12. Hi Carly? Sorry to hear about your washing machine! I hope it's easily fixed!

    I completely understand your frustrations with living with a chronic illness. We can be the strongest, most positive people in the world and the constant adapting, changing, painful challenges will wear us down. It is so important that we share our hissy fits as well so that it doesn't seem like a rosy road from outside. We can be amazing, and frustrated too :)

    Wishing you a much better day!!! You rock!

    ReplyDelete
  13. Sorry about the question mark by your name above- typo :)

    ReplyDelete
  14. Hi Carly, Love, love, love this. I have EI (formerly EHK they seem to have change the acronym on me LOL). It's such a pain & you've articulated perfectly what a pain it is. Spontaneity is a foreign concept in the Land of Those with Ichthyosis. I don't have half the issues you do but I totally get where you're coming from.

    ReplyDelete

Thank you for reading my blog. I love receiving comments :)
I really appreciate the time you've taken to write to me, and to share something about yourself.

LinkWithin

Related Posts with Thumbnails