25 August 2015

When I washed my feet in sparkling water. Knowing the limits Ichthyosis places on me.

Image: glass of sparkling water with lemon and lime. Text: 'When I washed my feet in sparkling water.

No matter how much I say I don't let Ichthyosis stop me, or I can do almost anything despite of it, the reality of Ichthyosis is that it can be limiting. Not just for me but for others too. But it's ok to ask for help, to acknowledge this condition might mean we can't do everything, and to slow down a little.

When I was on the Gold Coast, I caught up with some families I met at the Australian Ichthyosis Meet. It was wonderful to spend time with them again. These are amazing families - resilient, loving and have all experienced similar in regards to their children's skin conditions. Skin, and the management of it, was a common conversation topic. Everyone's skin is affected differently (mine is red and flaky, but the others are white and their skin splits or blisters), and treatments vary too. Some kids prefer the heat and humidity as it helps them, and others (like me) like the cool weather. The kids and I all might start out the day looking and feeling great - relatively smooth skin, nimble bodies - but as we move around and do things throughout the day, our bodies tire and the dry skin makes it hard to move, and the condition presents more obviously.

As one of the mums drove me to breakfast, we were discussing limitations, and how it can be hard for kids to know - or want to - take time out when they get sore, tired or overheated. We talked a little about what happens when we don't have regular baths or put creams on - it can often result in restricted movement and pain. Ichthyosis is a condition where skin and pain levels deteriorate. It is definitely a lesson in maintenance - for kids and adults.

I told her that in the past, it was rare I spoke up about being sore or cold or hot or affected by cigarette smoke or wind, because I didn't want to be seen as being difficult. I didn't want to be a princess. So I put up with it. I didn't act on my limitations because I didn't want to be defeated or look lazy. For years, I walked to and from primary school in 40 degree heat. I know. But with maturity came speaking up and acknowledging I might have to do things differently, or not at all.

I've gone from putting up with discomfort and pain to speaking up (politely) to change things. This usually involves requests for chairs! I ask for a seat on the train if I'm very sore. Sometimes I carry a chair around at a party so I don't have to stand. I ask for seat at concerts (I swapped from standing to the seated area at Lorde, and even perched myself on the side of the stage at a smaller concert). And I often ask for heaters to be turned on or to move out of the sun in the summer. Most recently, I've made the choice to only drive at night if absolutely necessary. Because my eyes get dry and cannot handle the light. It's sometimes not easy to recognise these limitations, and even harder to make others aware of them. That can be a coming out process if people aren't aware of my skin, explaining my limitations.

It has only been in the past seven or eight years that I've discussed workplace reasonable adjustment relating to my skin. This has mostly been time to attend hospital appointments and coming in later/finishing earlier if I am sore and purchasing additional leave as a backup to sick leave. But this year, I focused on physical reasonable adjustment after I felt increasingly uncomfortable at my desk. My feet were sore, I couldn't stretch out like I would at home on the couch (of course!) and I was cold. I never thought workplace assessments for desk jobs were more than ergonomics for the spine and joints. I thought my condition might be too complex to understand or find aids for.

Image: green sheepskin on a stool. Text: an ottoman and a sheepskin go under my desk.

But through talking with my manager, and then an occupational therapist, we worked out some strategies to make me more comfortable sitting at my desk. I now have a reclining desk chair, a bouncy foot rest, an ottoman (which is really just a hospital stool) and sheepskin. I was offered a heated blankie, but worried I'd fall asleep! I didn't ever think my condition warranted an ergonomic assessment - but it's been great to feel listened to and subsequently made comfortable. It's acknowledgement that this condition is as serious as others. I was very impressed with the service.

For an hour on that Sunday at the Gold Coast, we went to the beach. The beach looks lovely to me! But I honestly hate the sand and the cold water. It hurts. The salt is good for me. When the kids paddled in the water, laughing and splashing each other, I thought, maybe I should do so to. I hesitated (a lot), And made the excuse that I am set in my ways. I'm old.

My feet on the sand at the beach

But the kids had so much fun. So then rolled up my pants, took off my boots and socks, and with trepidation, let the waves lap at my feet. It was nice! Fun even. I lasted about 15 minutes. And then I said to my friend that I need to wash my feet and put my socks on without getting sand in them. I leant on her while she washed my feet and put my socks on. We howled with laughter as she washed my feet with no less than sparkling water. That's all she had, I promise!

And then we agreed that for each bath from now on, I'd be bathing in sparkling water. Such a diva. Spilling wine on my skin stings, so I'm not up for bathing in champagne just yet!

Carly findlay at the beach




  1. Great post Carly, thank you! It is so difficult to recognise and then make peace with limitations. We cut our daughter's schooling back to part time this term, she stays home on Wednesdays to rest. It was a really difficult decision to make as it will obviously impact her education. Luckily we've had validation from both her OT and physio who agree it is definately the best thing for her. Even though she is at school 1 day less each week, she is so much more productive when she is there because her pain and fatigue levels are not as severe. It really is all about management. I'm chuffed to hear how supportive your workplace is. That is awesome!

    1. Hey Cindy! That rest does make us more productive! I'm so glad your daughter is doing well because of this slight change in her schooling :) Schools are way more supportive now than they were when I was a student.

  2. If you are going to be bathing in sparkling water from now on, you'll want to get yourself a Soda Stream, I think. :) I'm not bathing in the results from mine but I almost might as well be, the amount of soda water I drink. Those are seriously cute pants you are wearing at the beach there, also too.

    I rarely drive at night any more. I find it really difficult to see at night with those orange lights they are using these days. I've tried a lot of different things to combat it, including increasing my carrot intake, but nothing has worked out as yet.

    A few years back we lived on a main road back in Adelaide, and an elderly couple crashed into a car which was regularly parked out the front of our place. The car was a burgundy colour, and me personally I find any car that colour just vanishes with those orange lights and the only thing I can see is the reflectors.

    We made friends with the couple and he was telling me a couple of weeks later that he'd lost all confidence in night driving. I told him that I'd had a lot of trouble since they put the orange lights in, plus several times on my approach to our place, I had not spotted that particular car at all until I got out of the car and went to the letterbox to get the mail, and after what happened to him I felt pretty much the same way and *I* was giving up night driving myself. :/

    I have found a couple of areas with the old white lighting and I find I cope a lot better with that, but those areas are few and far between.. so I let The Other Half take the wheel at "dark time" as my nephew once called it - he told me that dark time is when the dinosaurs appear. :) He'd seen Jurassic Park a few too many times.. and maybe they do appear, it is just with those orange lights who the heck could tell? :)

    1. Ooh a soda stream! That sounds fun!

      It is those coloured lights that affect me too! So bright. I'm glad you've also recognized your limitations and feel like you can tell others too. Thanks for sharing your story :)

  3. I really appreciate this post as well Carly, because as much as it would be nice to be able to say that Ichthyosis isn't going to stop my son from doing anything, the reality is that it already has and will continue to do so. The thing we all need to realize is that we all have limitations, and not one person can say that they "won't let" anything stop them. The thing is to focus on what we CAN do, and be thankful and content for that! I'm so glad that knowing that has led to you being more comfortable with asking for the things that you need to be comfortable!!!

    1. Hey Karen, thank you for writing, I love hearing from others in the ichthyosis community. It's so true - we must focus on what we can do - because there are so many things we can do!

      And yes, it's great I'm now more comfortable at work :)


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