03 February 2014

Ichthyosis and exercise

For a long time (most of my life) I hated exercise. At school, it was all team sports, out in the sun with too many flies. There was swimming and running and I couldn't do either. It was competitive and a big part of the school curriculum and I was never good at it. I was never picked for teams.

And I was often too sore to stick at something for a long time. When I was around seven years old I went to ballet class and loved it. I don't think I was much good at it but I had fun and felt included. I think feeling included is such a big part of enjoying any activity. A week before the ballet concert, I knew all the moves and I had my costume to dance to "I am a puppet, a flouncy bouncy puppet", but I ended up in hospital. Didn't dance again until I took up belly dancing when I came to Melbourne.

I haven't ever had a problem with my weight or shape, but I wanted to feel better about myself towards the end of last year. I wanted my clothes to fit right, for the skin on my tummy not to hurt when my jeans were squeezed over it. And to have some shapely knees ("that's not fluid, that's fat", a doctor once said to me!). I wanted to be healthy.

And so on a whim, I bought some heavily discounted gym clothes and signed up to my local community gym. Again. This time I've stuck at it. I do running, strides in the elliptical and weights. I try to do sit-ups and squats too. I've even tried a little pool time though I need to be so careful as my skin gets sore from the chlorine.

The benefits have been amazing. I'm surprised I enjoy it. I love the euphoria of reading small self-paced goals: running a continuous 500 metres, then 1 km, 1500 metres and 2 km. I love the way endorphins make me feel. I have a clearer head and an ability to just focus on what my body can do. I love being hungry after a workout, and getting a good sleep. I feel strong. I lost a few centimetres from my body too. Most of all I love how radiant it makes my skin. I feel my face looks calmer and clearer.


There was a five week period when I didn't go to the gym - a combination of soreness, heat and the Christmas break meant I wasn't able to. I missed it. I felt heavier and more stressed. But I'm back at it - slowly and gently - and I'm feeling the benefits again. I'm hoping to get back 3-5 times a week again.

For a long time I was scared of exercise - of not enjoying it and also having sore skin during and afterwards. My skin does sometimes hurt after exercise. But I'm so glad I took the leap to give it another go. Because the endorphins are enough to detract from the pain, and the pride I get from the challenge makes it worth it. And since I started back in September, my sore skin has not been related to exercise - apart from the time I fell off the treadmill (how embarrassment!). My doctors were so impressed with how my skin looked when they saw me late last year.

I want to list a few tips that help me cope with exercise. Of course I encourage you to talk to your doctor before taking up any exercise. Talk to a fitness instructor too. I know nothing about exercise except how it makes me feel. These experiences are my own and may not work for you or your child.


- I picked a community gym (run by YMCA) that offers programs for the disabled and elderly. While I don't take part in these programs, I feel confident that the fitness instructors are specialised in working with diverse participants.

- I booked in for a fitness assessment a week after signing up. The fitness instructor and I talked about the physical limitations of my Ichthyosis - not being able lift my arms up very well (though this is improving with weights, and I knew the lat-pulls had paid off when I could put my carry-on in the overhead luggage compartment!), a lack of temperature regulation and also that I might not be able to go to the gym regularly due to unpredictable soreness and infection. (My gym also stops automatic payments if you are too sick to attend - provided you present a doctors certificate.) I also talked to the instructor about my weight goals - that I wanted to lose a little weight slowly. We established a program that met my needs. It didn't wear me out and I saw results.

- My skin can get very sore if I don't take the time to prepare it for exercise. I shower beforehand, putting on my creams over my whole body, and putting my gym clothes on straight away. I wear leggings (full length) and a thin longsleeved top under a tight fitting gym top (Adidas ones are my favourite). I also tend to wear a light-weight sports jacket when warming up and afterwards (though there's no need to in this Australian summer). I have found jackets with zips that are away from my neck and face to avoid scratching. I also wear breathe-easy sneakers (the ones I have are mesh). The tight fitting clothes help keep my skin from scraping. (I wear leggings/stockings and long sleeves even when I'm not at the gym for this very reason). After a workout there's always a heap of powdery skin inside my clothes from movement and loss of moisture. After the gym I shower and cream myself up again, getting into bed again to warm up. If I don't do this I feel cold and dry, thus sore, for the rest of the day. (If I exercise after work I just get changed into my gym clothes and have a shower straight after.)

- A few parents of children with Ichthyosis have asked me how I keep cool. Keeping cool has been the biggest barrier to comfortable exercise. Ichthyosis means that my body doesn't regulate its temperature and I also don't sweat. Exercising in a gym means there is often air conditioners or fans cooling the room down. I drink lots of water - at least one 600 ml bottle when working out and another afterward. If it isn't too hot outside, I've gone for a run to the shops and walked back up hill with my groceries. Exercise in the morning is best in the summer - over the weekend I felt exhausted just walking from my car to the gym in the 30 degree heat. If you enjoyed team sports, I'd recommend choosing the indoor option, or doing them in the cooler months. I've also read of children wearing cooling vests or neck scarves which have worked for them.

- I make sure I eat reasonably well. If I go to the gym in the morning I have a banana prior then I eat a piece of frittata packed with vegetables and a little brown or black rice salad on the side afterward. I usually have a second breakfast at work. If I go after work I eat a protein rich dinner (like fish, chicken or lamb) with lots of vegetables. Ichthyosis means I use heaps of energy renewing skin cells, and so even if I only burn 200 calories a session, I feel drained.

(My frittata: eggs, milk, potato, pumpkin, garlic, broccoli, sprouts, chilli, cheese.)

- I'm meticulous about not getting germy. I wipe each piece of equipment down with eucalyptus spray before I use it, and again afterward, and I use hand sanitised too. I wear thongs (flip-flops, not g-strings) walking to and from the pool and if I shower there afterward. I don't want to contract any infections from the gym.

- I do what I enjoy and don't worry what others think. I've come to love running because of the endorphins, achieving the little goals and seeing good results. I don't mind Pilates but I get bored and hungry. I hated Zumba I was uncoordinated. I want to return to belly dance one day soon - I did love the laughter and social aspect of that. I like the elliptical, the treadmill and some of the weight machines. I enjoy sit-ups too. I don't compare myself to others' bodies or abilities when I am at the gym. I put my headphones on and am in my own world. There have been some lovely people I've come across - especially when I fell off the treadmill - but overall my gym time is a solitary one.

- I've not pushed myself too hard. I modify the moves when in a class. When I need to take a break I do. When I first started running, I would measure my endurance through songs rather instead of running a certain distance. Now I am more used to it I set distance goals. And a good playlist is a must - I'm into girl power playlists with Pink, Sia, Katy Perry's Roar and Thelma Plum being my go-tos. My favourite song to take me up to 2 km is Pink's I'm Not Dead - a fitting reminder that I'm doing this running thing. I might not be running far but I'm running. And I'm not dead.


I'd love you to share some of your advice for exercising - if you have Ichthyosis or other sort of chronic illness or disability. What makes it easier for you? What exercise do you enjoy? Do you wear special clothing? Does it make you feel good and accomplished too?



  1. I'm a dancer I dance six hours a week in classes. (I'm at the advanced level and even do pointe...which is ballet on your toes.) I drink lots of water and make sure I put lotion on afterwards if my skin is feeling dry. The studio knows and understands my skin and have been the biggest support system. My biggest advice? Never let your skin stop you from doing something you might love!

    1. Here's the video where I talk about dance: http://blog.firstskinfoundation.org/?p=739

  2. We don't have ichthyosis but a connective tissue disorder runs in our family that can lead to early degeneration of the joints and things like back and knee pain. It is quite hard to find zero impact exercise that actually makes you do work- except swimming. My middle daughter and I go to the hydrotherapy pools once a week, because this condition also brings intolerance to extremes of temperature, so the normal pools are too cold. She often whines and whinges and drags her feet but we do have a good time most times, and I feel later in life the routine of looking after her body will help her preserve her joints and strength much longer than I have.

  3. Hey, Carly,
    Ema has also been a dancer for years now. She also competes in cross country running each year in the fall. Jeff Gridley taught us the trick of taking a t-shirt, soaking it in water and freezing it. She wears that when running and also a hat that has been soaked in water and frozen as well. As for the dancing, her dance studio has a water cooler and her classes include several whole class water breaks. Who doesn't need water when exercising? If Ema appears more red than normal then her teacher asks her to take an extra water break or two.
    Sarah (and Ema)

  4. The hardest thing for me with exercise can be that my skin is uncomfortable when it's extra dry or getting overheated. To combat the uncomfortable skin- I put on some generic moisturizer before my workout then shower afterwards (especially if I am exercising a few minutes after I wake up in the morning). To keep from getting overheated I wear skimpy shorts and a tshirt or a sports bra when I work out and stay indoors with a glass of ice cold water right next to me on the coffee table. For my indoor workouts, I do Shaun-T's Hip Hop Abs videos once or twice a day depending on the length and intensity of them. I love these vdieos, they don't require I do too many dance moves that make my skin too sore and Shaun T encourages drinking water every so often (I drink more water than that haha). If it's nice out, I just wear regular clothes and bring water I just don't overdo it outside no matter what weather it is though because I don't have as easy access to a source I can use to cool-down like I do in my apartment or my parents' house. To eat I do a a scoop of Vegan chocolate Shakeology (a nutrient-rich shake) in the morning blended with a banana, almond milk, and cinnamon and sometimes cayenne pepper. I've noticed that the shake makes my body feel healthier overall and helps my muscles to recover after I work out. My skin doesn't cause me to have to eat extra (I have a mild/moderate case ofARCI/ Lamellar) so like everyone else I have to watch what I eat or I will gain weight Haha

  5. Cody LOVES football, basketball, baseball, and now wrestling. He also rides his bike whenever he can, and loves to skateboard and snowboard! He is 12, and finally learning how to care for himself a little better. We always make sure that he has plenty of water, and I remind him frequently of the signs that he needs to slow down. We make sure that his coaches know about his risk of overheating, and they have all been so understanding! His "symptoms" are definitely not as severe as most of the people that I have communicated with, but he doesn't let it slow him down!


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