Rare Disease Day 2014 - talking accessible services

Sometimes I feel like such a small fish - almost literally, with all of my scales! Ichthyosis affects an estimated 10-20 individuals per million, and there are at least 20 varieties of the condition (source).

It's no wonder I need to explain my condition to so many people I encounter - doctors, nurses, employers, service providers, strangers...

Right now I am trying to work with airlines to explain my cream needs for my international flights. It's so difficult when they've never heard of the condition and cannot fathom why I need to carry nine kilos of paraffin in stowaway luggage, even with a letter from my dermatologist. My experience with some airlines has been so disappointing so far - lengthy phone calls to international call centres (which featured a direct NO to carrying a small jar of cream onto the plane), no direct contact to special needs departments and lengthy forms to complete - it makes me anxious for the inflight service. I don't feel listened to or understood.

Every week I encounter more people affected by Ichthyosis - it seems we're not as alone as we sometimes feel. It's amazing how the internet has connected us rare gems - and we see similarities in our difference.

Today, 28 February, is Rare Disease Day. Its purpose is to raise the awareness about rare diseases and the impacts they have on patients and their families.

From the Rare Disease Day Australia website

"February 28th 2014 marks the 7th annual World Rare Disease Day and the 5th year Australia has been involved in this initiative.

This year’s focus is on improving care for people living with a rare disease addresses problems associated with fighting diseases which affect only a few people in each country. Expertise is scarce and scattered requiring a re-assessment of current treatment options that would result in cross-border cooperation.

Individuals and their families affected by rare disease often feel isolated and lack guidance as to how to best treat or manage the condition.

There are more than 8000 known rare diseases affecting more than two million Australians of which up to 400 000 are children. Most of these diseases are genetic, chronic and debilitating. Reaching out across borders can help individuals find common solutions and help to remind them that they are not alone.

People who are affected by rare diseases should be entitled to have the same treatment, access and quality of care as any other patient. Rare Disease Australia seeks to push for a National Rare Disease Plan to prevent those inflicted “falling through the cracks” of the Australian healthcare system."

Fortunately I've experienced fantastic care from my hospital team, though on occasion I need to explain my medical history to doctors, which does become tiring when I really am sick.

However, I do hope that Rare Disease Day is taken notice of by people in the service industry.

Attitudinal barriers like discrimination and a lack of understanding about rare diseases can make living an every day life difficult - it can be as burdensome as a lack of accessible and quality healthcare. Dealing with taxi companies, airlines, restaurants, support services, government organisations, insurance providers, employers...this list seems endless...is tiring.

There needs to be dedicated special needs departments in service organisations - with direct lines and email addresses. People who work in these special needs departments need to be knowledgable in disability and rare diseases. Forms should be simple - easy to fill out online by doctors and patients and send back to the organisation (none of this print, complete, scan, email to doctor, fax to organisation business). We shouldn't have to keep proving that we have a rare disease if we use a service provider regularly. We need to be listened to, and know that the advice we provide about our own rare disease is taken seriously by service providers. After all, we are the ones who know our conditions best because we live with them.

Those of us with rare diseases should be listened to by service providers, and shouldn't have to jump through hoops to do the things that so many take for granted. We should be entitled to accessible buildings and services. My airline experience is proving to be burdened with red tape - I'd hate to think about how difficult it'd be for people who are unable to advocate for themselves.

Get involved:

You can find out how to get involved in Rare Disease Day here.

Check out the Facebook page and share your story.

Tweet Rare Disease Day Australia.

Visit the American National Organisation of Rare Diseases. .

For more information about Ichthyosis, and to see some important research, visit the Foundation For Ichthyosis and Related Skin Types (FIRST) website.

Tell me about your experiences when trying to explain your rare disease to a service provider?

 

Cooking is love

If you follow my Instagram account, you'll see that I share LOTS of photos of food. I try to cook at least four nights a week. I've been happy cooking good food for myself for all these years, but now I've got someone to cook for and cook with. It's fun. Cooking is love.

When I first met my boyfriend, he told me he hated cooking. How would this ever work? He didn't like cooking. But as the months have passed, he has started to enjoy cooking. And his tummy is very content.

There's been a lot to teach him - like cheese is no substitute for butter in the pan - but he's become a fine apprentice.

We make brunch almost every Sunday - oats and pancakes and French toast and fritatta. Weekends are spent preparing more complex meals - we made burgers on Sunday and pizzas two weekends ago. We've done risottos and paella. We are planning to make pasta on the long weekend.

Weeknights are a simpler affair with salads, bolognaise and curries. We make recipes up in our heads.

We laugh and play music and cuddle.

And he enjoys it. He chops and stirs and and fries. He's a great bacon fryer. He's the type of man who's mechanical - makes and fixes things. And so I can see his logical mind working when he's helping me in the kitchen.

It's like My Kitchen Rules at my place every time we eat now. I love cooking for him, ensuring he has wholefoods. He's turned into a foodie - even texting me when he's not here to discuss what's happening on MKR. I love it! His words last night were "An hour and fifteen to do an eggplant entree - god." Foodie!!

Here's what we made for dinner last night: salad of figs, mushrooms, stinky cheese and brown rice. He serenaded me with Lionel Ritchie. Oh the romance!

 

Recipe - serves four as an accompaniment.

Four figs, washed and cut into eighths

Two large mushrooms, sliced

One cup of uncooked brown rice

Handful of parsley

Half a zucchini, sliced thinly - use a vegetable grater

Piece of bacon, finely cubed - I used a 10cm chunk of bacon

Small piece of stinky cheese - I used Milawa Gold, but Gorgonzola will do

Splash of balsamic vinegar

Olive oil

-

Cook brown rice, drain and cool.

Fry mushrooms in a drop or two of olive oil. Once soft and blackish, remove the mushrooms and put aside.

Use the same pan to cook the bacon and zucchini - about 10 minutes.

Finely chop the parsley.

Put these ingredients (rice, mushrooms, bacon, parsley and zucchini) in a bowl, splash with balsamic vinegar and olive oil.

Gently place the figs on the salad

Crumble the cheese over the top.

Eat!

-

It's so wonderful cooking together. It's a happy, relaxing time and I love seeing him appreciate our meals so much.

I now see why my Mum enjoys cooking, and that every meal she prepared for the family was done to nourish, to bring us together and made with love

Do you cook for or with your love? Does it bring you together? What do you cook?

 

Rest in peace Charlotte Dawson.

Social media has put me in touch with so many people from all walks of life - some of these people have been celebrities that I chat to regularly on Twitter.

This morning Charlotte Dawson was found dead in her Sydney home.

Charlotte was often on the receiving end of online bullying. She attempted to take her life in 2012 after an onslaught of attacks via Twitter. Charlotte was open about her depression, which I'm sure helped others to feel less alone.

She was a huge advocate for people who were bullied online, and involved in charity work supporting mental health. She fought for the underdog. She was so warm, she took care of people there and took those fragile people - just like herself - under her wing. She looked after people on Twitter, supporting them and encouraging them.

Charlotte and I have been friends on Twitter for a couple of years now, tweeting to each other regularly. When I was in hospital in 2012, she told me the food I was photographing looked delicious and that she wanted some, and we laughed (virtually) about how it was the first time hospital food looked so desirable! She gave me her phone number too, in case I needed to talk. I sent her a few messages - namely to see how she was during her publicly difficult times. She cheered me on empathetically during my Reddit experience. Yesterday she tweeted me. Saying she was a fan of my blog, and to keep blogging. I thanked her but wish I had have asked her if she was ok.

I feel sad. I didn't know her for her celebrity, TV hosting or modelling work. I knew her for her words alone. Online friendships, they're real, you know. I didn't know Charlotte Dawson away from Twitter, but I feel like I knew what she stood for.

Her death is so tragic. She was present on our TV screens and she reached out to so many yet must have felt terribly alone. Depression does not discriminate.

Rest in peace, Charlotte Dawson. Thank you for the tweets. Thank you for the friendship. My thoughts are with your family and friends - I know they're hurting right now.

If you need to talk to someone, please contact Lifeline: 13 11 14.

 

On being afraid to blog.

(source)

Back in December, amidst the Reddit stuff, I was getting my boyfriend to moderate my blog comments because a few nasties were coming over - readers from the mainstream media I guess. I saw comments saying I'm seeking attention through telling my story, that I am faking Ichthyosis, and that I'm ugly and I should kill myself. Not nice. And then he took the blows for me, being my virtual shield and deleting the comments he didn't want me to see.

There was one comment that I happened to see - thinking I was brave enough to deal at that stage. I let it through, because really, it was a reflection on them and not me. It was from 'Sandy':

"Here's something negative, but not what you expect. There's more to Carly than ichthyosis - but not much more. Take that away and she is one of the most simple-minded and boring people you are ever likely to meet, she is prone to weird obsession (Darren Hayes, Bob Evans) and talks almost exclusively about ichthyosis, because it's all she has going for her, she is literally one-dimensional. If she didn't have that, and you met her, you would just keep on walking, she is the cardboard of people. She whores herself to the media, but she is in fact incredibly dull and incredibly boring. I know her personally, I know what I'm talking about. This has just given her the fuel she needs to crap on about it for the rest of her life!!! A crusade nobody asked for."

I tend to remember the hurtful comments far more than the thousands of lovely ones I've received. Stupid of me, really. The hatred from some anonymous comments sting, but words from some one who supposedly knows me seemed to cut deeper. It's weird hey? There has been people I know who tell me, face to face, they don't understand blogging, they don't understand the need for me to put my life out there. I've had performance appraisals in my day job. But a comment like this isn't like that. It's a judgement on personality - a comment on perceived blandness. Is blandness the trait we're most afraid of exhibiting?

I was wracking my brain to figure out who Sandy night be. I know a few Sandys in person, and I know they wouldn't waste their time leaving that comment. I figured Sandy is probably someone I met briefly at an event who caught me talking about what I'm passionate about, or who has summed me up from what I've spoken about on social media alone. The comment bugged me for a while - leaving me feeling a bit paranoid and worried that I just don't know enough. Maybe I am a bore? I jokingly replied that maybe I should be watching more quiz shows so I've got more than singers and Ichthyosis to talk about.

And then I told myself: Sandy's words and opinion should not matter, especially if they do know me and were not brave enough to say it to my face. And not everyone is going to like me or find me as interesting as I hope I am. Maybe I do piss people off for talking about what I'm passionate about. That's ok. And if Sandy and I do know each other in person, we probably aren't friends.

I met my lovely new friend Charlotte Lea who blogs at The Good Girl Confessional for dinner last month. She and I talked as much as each other - about blogging, disability, navigating airlines' special needs departments, love and why women tear other women down - especially when the ones being torn down are confident and happy. Charlotte wrote a post about that very topic. She has also received an email similar to the comment I received, from a person who claimed to know her, bringing down her happiness about being in love, plus a comment calling her a slut because she writes about sex over 40. She said, like me, that these sorts of personal attacks shocked her more than other blog comments she's received.

Charlotte said to me: "I've had nasty comments as you know from people who apparently know me. I can deal with differing opinions and it's quite healthy, but to read comments that are nasty, or threatening - it's quite disturbing. I do believe that it says much more about those commenting than about us! I think social media has created an amazing avenue for all to voice opinions and that's great. It does however allow people to hide behind computers while they espouse poisonous sentiments. Not liking my work is one thing. Calling names isn't called for nor is it necessary. I think interesting conversations and ethical debate is much more dignified!"

Charlotte is right - social media is an enabler of anonymous poison. Even now I hesitate to moderate my comments, as I still receive a lot of traffic from Reddit. I wonder what may be lurking there.

And it's probably obvious that aside from being extremely busy planning my trip, working my day job and on other writing and speaking pursuits, and in love, I've been rather absent from regular blogging this year. I'm shaken - from Reddit and from the comments that came after. This is different to the performance anxiety I sometimes feel before writing. It's not worrying that I won't be good enough - it's worrying what will be done with my picture?

Nothing I write here is as protected as I once felt it was. It all changed when I saw my image dissected on the dungeon of the Internet, and then a week later my words made fun of. I have a backlog of appearance diversity and ichthyosis awareness posts to edit and publish, but I have not wanted to in case the subjects' appearances are ridiculed like mine was. I have media requests I've not responded to and I've been overwhelmed by the hundreds of people who sent lovely messages - I want to reply to thank each of you soon, I really do, but it still feels a bit too raw. Sometimes it feels safer to share an anecdote or funny picture meme on my Facebook page. In all honesty, I've been afraid to blog.

I'm doing ok though.

I've thought a lot about self advocacy online since Reddit, the positive and negative aspects of being an online writer, and the idea of "you put yourself out there so expect criticism". I don't buy that. While I expect healthy debate to happen when opinions differ, and I know not everyone will like you (or me), online writers shouldn't bear the brunt of someone else's issues - be it misogyny, racism, ableism, jealousy or pure nastiness. I have many friends who write online, some who write about important issues, others who write just to entertain, and I've seen all of this behaviour targeted at them - some frighteningly extreme. And quite often the online outrage about an issue is disproportionate to the issue itself. Strong opinions, no matter how polarising, should not be a reason for rape or death threats.

There's bravery in being vulnerable online, in writing your opinion for the world to see and even sharing your photos. Writing online is no longer separate to real life - and there's a firm reminder of that when people who claim to know you in your real life come to rattle your bloggy windows. There's a happier reminder that life online is real life when you meet the wonderful friends you've made through blogging - just as I have.

And so, I will do my best to focus on the many, many positive comments that outweigh the very few negative ones.

I will continue to reaffirm that most new readers only know me from 500 words and a picture, so who are they to weigh me up?

I'll remind myself that I wont be everyone's cup of tea but I will be some people's shot of whiskey.

And I will try not to be so afraid of writing here anymore. I want to be back blogging more regularly.

Blogging is something I'm committed to and spent countless hours doing. More so, sharing my story and my photos to break down the stigma, fear and hate that I was on the receiving end is the very reason I blog. I love it and I won't let 'Sandy' and a few other anons knock me down.

 

Valentines Day

 

This is the first Valentines Day that I've ever properly celebrated. That I have celebrated truly with someone else. That I have ever celebrated in the commercial, cheesy, romantic way that Hallmark intended. My boy is taking me away to a five star hotel at a surprise destination for the weekend. We have bought each other presents. He's so proud to have organised this - two months ago now. We'll eat seafood and hold hands and wander down the local shopping strips.

I'd like to think I don't buy into this commercial day of love, but how can I not when my boy is making me feel like a princess? And it seems like Valentines Day is far more fun when the love is mutual.

I have sent many cards and presents to unrequited loves over the years. Most were met with polite smiles and awkward but genuine thankyous. But no valentine recipients ever returned the love I was so desperately looking for. In hindsight, reciprocated love would be a sign I was 'normal'. It would be a validation of my worth.

Then I realised it's more validating to love yourself instead of needing to be on the constant lookout for love.

And while I have had relationships in the past, this one feels most real, the most stable, the most accepting. This is the one that I'm not left wondering or fearing the end. The one where I rarely worry about whether my skin is a hinderance (and believe me, I do, I still do). It's the most loving. I finally know what it's like to make love in the true sense, as opposed to having sex. I laugh with him unashamedly. And I cook for him because food is love.

I seem to have written about this many times before. And I'm not playing the victim card, honestly. But it's my experience. It is very hard for someone who looks different or has a disability to find someone to love them.

And so now it's happened, I am so proud/relieved/in love. A few of my friends with disabilities have talked about how they felt they had to sing it loud when they'd finally found love, they'd finally had sex - like it was something to prove. Because the world doubted the idea that they deserved and would find love. I even catch myself now hesitating when I say "my boyfriend", as I still worry I might come across someone who can't believe it - even with my strong sense of self worth. Crazy hey?!

A few people I know want love. They don't have visible differences or disabilities. There's nothing outwardly 'wrong' with them. They're tired of being alone, feel like they're ageing, and lonely, I guess. And there often seems to be a lack of self love. I know what that was like. I'd always joke I'd be a spinster, but deep down I worried I'd never find unconditional love beyond my parents.

So many platitudes were said to me when I was single. They're said to people I know too.

"Someone will come along one day."

"The right person is out there."

"You are a great girl, why wouldn't you find love?"

"The right one comes when you stop looking." (To an extent that one was true for me.)

"You don't need a man in your life."

I believe love came when I felt good about myself, and also when I stopped worrying when I'd find it. I met my boy when I had no time for love, when I wasn't interested in the very few messages I'd receive from the online dating site I registered with but never participated actively in, and also when I was at my most confident in myself. I can't say that you will find love but I do know that putting positivity out there brought love back for me.

I took a chance on a man who wasn't my 'type' (my type seemed to be the bad, unemployed, drug using type...though my ideal was different). By taking this chance, I've found a man who doesn't have much in common with me but he's got the biggest heart and warmest hug I could wish for. He looks after me so, so well. Everyday I thank him for finding me.

I sent virtual kisses to a lot of toads. I spent time loving unrequitedly and loving those who did love me but didn't make me feel good about myself. Then I opened my heart up and found my prince.

 

The Love Your Sister return

Today could have been a much different day. Connie Johnson's breast cancer prognosis meant she might not have been there to welcome her brother Samuel home as he unicycled into Federation Square.

But she was there and they greeted each other with a hug that the thousands in Federation Square didn't want to end.

Samuel, one of the faces of Love Your Sister, has just completed a unicycle ride around Australia, in the name of breast cancer awareness and raising money for research. He's covered more than 15000 km and raised over 1.4 million Australian dollars for The Garvan Research Institute.

He got people talking about being breast aware. And he kept his promise he made to his sister years ago over a few drinks, and she's continued to fight breast cancer. I believe it was this journey, this amazing cause, that has helped her live.

But Love Your Sister has strengthened both of them. Samuel believes Connie has saved him. On the stage at Federation Square, he said to Connie "You've given me a life I cherish now. I'm going to cherish every day we have left together."

There wasn't a dry eye in Federation Square.

The Garvan Institute has set up a fellowship in Connie's name - a beautiful legacy she will leave.

While the unicycle ride is over, Sam's not giving up. "I'm pissed off" he says, saying he started off being pissed off at the way cancer was robbing his sister's life, but now he's angry on behalf of all the women affected by breast cancer that he's met this last year on the road. "It's tearing families apart", he said. "My job starts on Monday." He wants to continue advocating until his last breath.

You can still donate to Love Your Sister at loveyoursister.org. Follow them on Facebook too, they're doing an amazing job.

Congratulations to everyone involved on the enormous effort.

It's been wonderful to be a part of Love Your Sister promotions since the (public) beginning. I'm so glad Samuel took a chance on me to tell his story through this blog. And I'm so glad I was able to meet Connie one year later at the finishing line. I've seen incredible kindness, strength and determination. These two are true heroes, role models.

As a blogger, it's always great to donate my time and content space to a cause. Bloggers, if there's a charity that resonates with you, don't be afraid to reach out to them and see how you can spread their message.

 

A blog is a secret shared.

Blog readers tell me their secrets.

Some of their secrets are public, posted on my blog commnts thread or on my Facebook page. Others are in a private message - they tell me they've got a lump in their throat just typing these words. Their words spill from their fingers like horses being let out for their daily run.

A friend who reads my blog told me a secret a few weeks ago, in response to my #abledpeoplesay post - she said what she was holding onto for many years was so difficult to write. What she told me brought tears to my eyes, and was difficult for me to read too. But she had the confidence to tell me something that's been so hard to live with.

Because of my words, my readers sometimes tell me this is the first time they've admitted to having their condition or feeling a certain way or holding a memory. They thank me. I suppose they feel they know me, or breathe a sigh of relief when they finally find someone like them.

It's a privilege to know their secrets. There's this sense of trust, that I will hold their secrets close to my heart because I've told mine gently too. And I will.

I'm convinced words breed words, stories create more stories - creating a community supported by anecdotes and empathy. I see an exponential effect through telling my stories - and now there's a series of babushka dolls filled with stories similar to mine. Blogging really does help readers write.

Some people tell me they're not good writers, but when they do write some of their story out for me, I see they're wonderful storytellers. When they write from the heart.

I've heard bloggers say statistics mean the most to them, numbers growing is the reason they blog. But for me, the reason I blog is because people tell me I've made a difference to them.

To all those readers who tell me their secrets - thank you. I love the conversation that continues from posts I write.

 

Do one thing that scares you everyday. Ice skating.

I am often hesitant to do things that scare me. I am clumsy, accident prone and risk averse. I don't catastrophise but I am aware of my lack of coordination. So when my boy suggested we go ice skating to escape the heat on a 40 degree day over the weekend, I said yes and then I said no. I didn’t want to break my leg before my overseas trip (or anytime, really). I didn’t want my fingers to be sliced off by a wayward skater. I didn’t want to fall and smash my teeth. And so I suggested we go to the movies instead. It'd be the safer option.

“But I was looking forward to skating”, my boy said. And then I started a conversation on Facebook, asking if I should go ice skating or the safer option of a movie. Almost everyone that replied said I should try it. I knew he'd look after me too. And so off we went to Medibank Icehouse (after a visit to Ikea, where we committed to each other with an Allen key. It's been suggested to me that the assembly of flat-pack furniture could be a more practical alternative to Tony Abbot's couples counselling. If we can get through assembling a Brusali, we can get through anything.).

It was 30 degrees cooler inside the icehouse. There were disco lights and a DJ. The skating rink was named after Steven Bradbury, the Australian Winter Olympian who famously won a gold medal after his competitors tumbled behind him. The skating rink was packed. The other rink was the arena for a game of ice hockey.

I had done ice skating as a kid – bundled up in a hot pink parka, fearless and skilled up from nights roller skating around the streets of my small town. But as an adult, my fears were brimming. I didn’t have the confidence to let go of my fears or the railing. I didn’t want to fall. I didn’t want to look silly. We seem to bottle our fears up more as adults, asking what ifs and worrying for the worst. It’s our life experiences of previous hurt that stops us from doing things that scare us.

But as I found out ice skating, the things that scare us are the things that make us happy. Take love – so many of us, including me, are afraid to fall in love in case we (or the other person) gets hurt. Yet taking that risk could make us the happiest we’ve ever been. And facing those fears help us grow and empower us. I guess it's how children mature, by doing things that scare them, and surviving them.

Kids whizzed around the rink, weaving and laughing and spinning. There were only a few adults who showed child-like abandon – twirling and shimmying to the music. Some of the adults were as scared as me. Others were more uncoordinated than I was – faced with the challenge of keeping themselves and their children upright, or slipping and sliding trying to stay poised.

I knew that if I continued to be scared of standing upright on my ice skates, if I held back with my movements, I wouldn’t have fun.

And so I hired a skating frame – like a zimmer frame. It steadied my balance and self-beliefs.

I sped off around the rink, alone and confidently. My boy is a good skater – it surprised me. Though together we are no Torvill and Dean. He did his best to steer me and push me along when I got tired. When I lent my frame to another novice skater, my boy held my hand as we did a lap around the rink. I did fall with the frame, but it wasn’t due to my own clumsiness – another skater knocked me over after he tripped. My knee hit the ice with a thud – it bled and throbbed. When I got back onto the rink after a short rest, I lost a little of my confidence. But I am ok. The worst did not happen. It was so much fun. And a great leg workout too.

Like when I climbed the high-ropes and did the flying fox at camp, and like when I was in the mosh at a Placebo concert, the reality of ice skating was not as bad as what could go wrong in my head. It was one part terrifying and two parts exhilarating. Nothing went wrong. I couldn’t stop smiling. I am so glad I chose to do the activity that scared me. I want to go again.

What have you done that's scared and thrilled you recently?

 

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?