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.
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.
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!