27 August 2015

Helping baby Julius. Social media for social good. Thank you.

In May I shared Julius' story. Julius has just turned one and lives with his family in the Philippines. He has Harlequin Ichthyosis. Julius' skin condition was not treated for nine months - and due to the worsening of his Ichthyosis, he's lost his hands and eyesight. He has been treated as an outpatient at a regional hospital, but his family cannot afford products to maintain his daily care.

His carer - church volunteer Jacquelyn - has been keeping me up to date about Julius' progress. A couple of months ago, she sent me a photo of Julius, and said that his mother has nearly run out of creams. Julius looked so distressed, so sore.

I can't imagine not having the essentials to survive Ichthyosis. Julius does not have access to the same level of medical care and treatment as myself and the majority of others I know have. I know he and his family will endure some shocked reactions and exclusion because of Julius' appearance. The pain of going without a proper bath or without creams would be excruciating. This risk of infection, skin tightening and further extremity loss is enormous.

And so I wanted to do something to help this little boy. I thought, if people donate just one tub of Dermeze (or Aquaphor or Vaseline), it will help him. I shared his photo and story on social media, asking people to consider donating.

People donated much more than one tub of Dermeze. They donated bath wash and oils and small and large tubs of ointment. They also donated money, so I could purchase more medical supplies to send to Julius. And so I stocked up on Dermeze, QV bath wash and oil, Cetaphil wash, MooGoo wash and scalp cream, eye drops and creams, ear drops, eye wipes, hand sanitiser, Bonds Grow Suits, a fluffy monkey and a present for his big brother.

I was hesitant to send the creams in the post - for a few reasons. People were sending money and ointments and good faith, and what if it was stopped by Customs or stolen? Julius' family isn't a registered charity. Some people in the Ichthyosis community were dubious and discouraging, which disappointed me greatly. Despite all of these doubts, I needed to coordinate help for him. I know the pain of Ichthyosis.

I called a few equivalent churches in Australia - who were unable to provide advice or assist with coordinating delivery - and I also contacted a few people who send medical supplies to other countries for advice. Couriers were suggested, and also registered post. I also spoke at length with Jacquelyn and the church pastor on the phone, who, through crackly lines and broken English, both gave me a promise the medical supplies would get to Julius.

And so I posted the medical supplies by regular Australia Post.

Julius' carer Jacquelyn received the first parcel at her church two weeks after I sent it. She sent me photos of the family, surrounded by creams and bath wash. I had tears. The gratefulness in their faces shows me just how much their lives have been changed.

Jacquelyn said:

"At the time, when we have knocked on doors for Julius and we thought NOBODY will open it, I told Julius's mum to look up and pray, SOMEBODY might open a window and God heard it. He touched EVERYBODY's goodness of heart and sent Julius's an unexpected pour of Love and Prayers, that ANYBODY could wished for. Thank you so much to all of you who sent care packages, love and prayers to this little FIGHTER."

She also told me about the effects the medical supplies have had on Julius:

"Julius can now move his body because of the relief that the creams and oils has given him, his skin doesnt breaks like it used to be so he enjoys sleeping and plays by himself or playing with his older brother even he can't see him, a simple touch and cuddle makes him really happy and Julius loves music, he has 60 mp3 healing songs and some groovy musics makes him happy too. He has reached a milestone considering his condition before and now. It was really a BIG miracle and a big leap of hope for the family. His mum said, before, people are scared to touch or even look at Julius but now everything's changed."

I posted another package two weeks ago. The family received it this week. Look how happy Julius looks. And he's getting baby fat! Cute!

This time I included lots of eye care products as its so expensive. His mum is so grateful. I also included a present for his big brother - a magnetic space landscape.

I've posted over 15 kg worth of supplies so far, and another box will go next month.

Thank you to everyone who donated money and creams, shared the posts, asked how Julius is doing and gave me advice on how to get the supplies to him. Julius is just one baby - of many - that we can help. Through sharing my story and through sharing others' stories, people get to know more about ichthyosis and donate to an individual in need, should they choose.

You can now donate directly to a fund - Jacquelyn will be using these funds to purchase creams in the Philippines.

This is social media used for social good. Thank you for your kindness and generosity. Thank you for trusting that Julius is in need.

(Julius' mum has given me permission to continue to share his story and photos on my blog and social media.)

 

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

 

 

21 August 2015

The time I met Dooce (and what she taught me about handling criticism).

Last Friday I saw Heather B Armstrong (Dooce) speak at Problogger. She spoke about the criticism she has received over 14 years of blogging. (She started blogging in 2001, "right after I hopped of my dinosaur"). As her session began, a recording played over the AV - her reading out the hate-mail she received. Things about her looking anorexic and people saying they hope she gets cancer and dies. She looked visibly upset, hardened from the abuse. She said she can't go to a play date with her children in case someone writes about her online. It was heartbreaking. The criticism on top of life's regular challenges can be unbearable.

Heather said the people who leave awful feedback are more deserving of our compassion than those who send praise. She believes blog critics have unprocessed pain all through their lives.mthey do not think bloggers are human. They are hurting.

It's easy to shake it off once, she said, but "until you run into criticism again, you're going to have to shake it off more". It escalated exponentially as her profile has risen. She advises against being defensive about the criticism - "There is no use for that emotion or energy whatsoever", she said. Being defensive never prepared her for the next wave of criticism.

She spoke of the lack of understanding from people who don't blog - they don't understand why criticism upsets us. It upsets us because we write from the heart - especially those of us who are personal bloggers. Our lives are on the line.

But we have to continue to tell our stories (and I believe only our stories as personal bloggers) - to make a difference to the world, to help othersMans to help ourselves. We have to write bravely. And readers need to respect that.

She seems like one of those writers whose entire body is impacted by the writing process - words tumbling out like she is running the race of her life, wiping her brow with relief when the final full stop is placed. "Courage is telling our story not being immune to criticism. If it didn't sting I wouldn't be able to tell the story."

Heather referenced one of my favourite writers Lindy West - recalling the story of when Lindy confronted her troll. I admire the strength of both these women, so when they tweeted me, I fangirled. Tellingly, as soon as Heather responded, a troll came out to play. Ugh.

I really liked how she told readers how to deliver constructive criticism: "constructive criticism is saying 'here's how you could have handled this better' so we can be self aware in righting wrongs". She encouraged readers to leave constructive criticism to do it politely, tactfully and kindly.

She also monetised the hate - taking the hate-mail and creating a blog and covering it in advertising. She made $10,000. What a way to benefit from a horrible situation. Here's that blog.

She ended by giving bloggers permission to shut down the criticism, to not give them airtime. "No one gets to come into your living room and take a poo on your floor. Delete negative comments." She also doesn't advise that we seek out negative comments about us (or for our friends to let us know we are being discussed). (She actually said 'poop' but I hate that word so I shortened it!)

No one gets to come into your living room and take a poo on your floor. Delete negative comments. - Dooce on stage at Problogger

I had goosebumps after her talk. So vulnerable, courageous and wise. It is hard to switch off as an online writer, and while the level of criticism and hate I've received has been small compared to others, it's there. And it can be frightening, and every harsh message makes me question my ability and place as a writer. Yesterday I posted something on Facebook about petroleum products and I saw the messages coming through and was terrified I'd be attacked for using paraffin for my skin. Because it's happened before.

While I think her talk might have scared new bloggers off, I don't think we should give up writing because of these critics. I think we need to look after ourselves, seek help when we need it, keep talking about ourexperiences to our blogging friends and colleagues and taking time away occasionally. It's so important these haters don't take over our esteem and talent. We need to cushion the blows as best as we can.

I snuck up the back of the room with a friend to meet Heather. I told her that I knew of her, but hadn't read her blog so had no preconceptions. She was grateful for that.

I told her about Reddit, and how I turned the hateful conversation around. I was so thankful - finally I heard from someone who knew a little of what I went through because of Reddit.

You can't switch off. These haters are hurting - while we are living our lives, they are so miserable in theirs, they bring others down. But we don't have to let them in. Thank you Heather Armstrong. I needed you in December 2013.

There's a lot more I have to share about her talks at Problogger - especially about her beliefs about personal blogging. Stay tuned.

 

20 August 2015

Six Instagram accounts I love (plus an Instagram tip from me).

When I was at Problogger, I saw a speaker called Jadah Sellner who spoke about growing an instagram following. She had some great tips which are easy to implement. Her number one tip was to engage authentically with others. Jadah runs an account called Simple Green Smoothies - she's got 300,000 followers which she and her business partner have cultivated since 2012. Jadah uses Instagram to share photos of green smoothies and through genuine connection and trust, brings followers back to her blog to sign up for free and paid smoothie challenges.

Carly Findlay and Jadah Sellner

Jadah is community minded - and gave this great advice:

Choose love over metrics - Jadah Sellner, #pbevenf

I believe this too, Jadah, I do.

I love Instagram. It allows me to show bits of my life. I keep it real - showing my cooking (including a spilt bowl of porridge!), fashions and sunsets. Instagram, has worked well for me to tell mini stories between blog posts, or to promote (or summarise) blog posts.

I also use it to share information about Ichthyosis, and find others with the condition. I love how it connects me with others who have Ichthyosis - because of hashtags. If you have a niche blog or instagram account, use hashtags so people can find you and your cause. That's my number one tip.

Mostly, I love looking at others' photos. Instagram is a window to the #SoBlessed soul. People are so talented. And lead beautifully curated lives. That's typed with irony. Because I know Instagram is just a showreel of the best bits of someone's life. But it can be a nice escape from yours too.

I want to share some of my favourite Instagram accounts with you, I hope you enjoy them as much as I do.

Vanilla Zulu's instagram - cheeseboard

@VanillaZulu

Mel from Vanilla Zulu is a foodie. It's not surprising why I like her - amazing photos of food, and she also runs a cookery school in Brisbane. Just look at that cheese platter! Wedding inspo right there.

Poppyseedhouse's instagrm - coffee surrounded by flowers

@poppyseedhouse

Sharon from Poppyseedhouse lives in Suffolk, UK. She takes beautiful photos of buildings, weddings, gardens and children. I love the ethereal nature of her work. Stunning.

Heidiapples instagram - breakfast

@heidiapples

My friend, HeidiApples, who is a nutritionist, makes the most amazing whole foods. I love her breakfasts (that's chocolate porridge up there!), her food styling and her cute baby bump (she's going to be a mum next month!). You won't be disappointed. She blogs at Apples Under My Bed.

RarePearStudio instagram - collage

@rarepearstudio

Shani from RarePearStudio is an amazing artist. So bloody talented. Everything she paints is pretty. We've collaborated on something exciting - watch this space. Shani and I met at Problogger after months of talking online - she's very funny.

Carly findlay and Shani from Rare Pear Studio
Into the fold instagram - child's bedroom

@into_the_fold

Instagram has got me into home porn. I mean, not literally making pornography at home. Just eyeing off beautiful interiors. Into_The_Fold sells waterproof cushions and its Imstagram account features beautifully decorated rooms. I love the kids' rooms the best - cluck cluck. Sigh. My room would never be that amazing.

Kellysnaphappy instagram - flowers in icecream cone

@kellysnaphapoy

KellySnapHappy does wonderful things with flowers, balloons and icecream cones. I would love to buy a print of hers and hang it in my house. Stunning.

I'm going to share some bonus tips:

Canva is my favourite app to create infographics. It's free and can be used in an app or online.

I love Diptic for framing multiple photos.

I use my (gifted) Olympus Pen epl-7 for taking most of my photos now. It's great because I can transfer the photos to my iPhone by wifi immediately! Magic.

And SquareReady makes rectangular photos fit into an Instagram square.You can get that app from the Google Play or iTunes stores.

Hope they help!

While watching Jadah speak, my Instagram account clicked over to 3000 followers! Last conference, it clicked over to 2000. I said to Jadah that because I'm a personal blogger, I am my own brand, and I share my life as a whole with the world, and to show life beyond Ichthyosis. She said I am doing ok. You can follow me @carlyfindlay.

Macarons - 3000+ Instragram followers - thank you!

Who are your favourite Instagrammers? Got any tips for me?

 

 

 

 

 

 

 

 

 

 

18 August 2015

What I wore to Problogger

So, this last weekend I went to the Problogger conference - a conference for bloggers. 700 of us - with about 10% of those male! I was nerding out - in my element learning about blogging, content creation, networking and promotion. It was SO social - I've not seen many of my blogging friends for a year, and some I'd never met until the conference! I've got a big to do list - the number one priority is to look after myself more - to slow down! And so because my brain is completely full (a socialisation-motivation-inspiration hangover is worse than the wine flu, honestly!), like Vanessa (Mrs Problogger) I am dipping my toe into writing about the event by starting off with a fashion post. Here's what I wore. (It was so nice not to dress so wintery!)

Friday morning I started off at the gym! I know! I ran just over a mile on the elliptical - more than 1.5 km - not bad for someone out of practice! And before 6.30 am. So I wore gym clothes. Purple jacket and grey pants from Kmart, and a coral Adidas tank.

That was the only time I went to the gym because on Saturday morning my skin was too dry from the aircon to feel comfortable, and Saturday night was spent dancing the night away to 80s music until my stomach felt like I'd done sit-ups, so I figured that was enough exercise! I did feel great after the run though!

And after a shower, I dolled myself up for day one of the conference.

My jacket is from St Frock. I was given a charcoal one a few months ago and LOVE it, so when the navy one went on sale, I snapped it up. So flattering. My striped tshirt is from the opshop. (And I'm wearing anotherlong-sleeved tshirt underneath.) boots are from Via Nova. And this amazing skirt is from Chic-Wish. London buses and phone booths. They have the prettiest photographic print skirts - Frocks and Frou Frou got me onto them. The London one is sold out (sorry!) but there are lots of others. The sizing is super small though (or I'm a little big at the moment!).

That skirt was like a celebrity. So many people stopped me to tell me how fabulous it is! Tonia chased me down for a photo and blogged about my skirt (and other fabulous fashionistas). I just love the bold colours and London scenes (my fave city!). I'm also wearing a jubilee brooch which a friend gave me after my speech in Bristol.

That night there was a themed party - Shine. I packed something old and blue - my sequinned mullet dress I got from House of Frazer in the UK three years ago. It's a glam go-to dress. I did get cold by the pool, so needed my wool jacket halfway through the night.

These ladies are two of the nicest, most stylish in the blogging industry. Tatum and Nat and give practical, fun fashion advice. I love how encouraging they are of all women having fun with fashion. They blog at Make it Look Easy.

Problogger was a Mecca of fashion. Seriously amazing. It was like being at NY Fashion Week at times. How amazing does Robyna look?!

After a bad night's sleep the previous night, and a huge day, I'd finished up at the very lavish party by 8.10 pm. The bed felt like a cloud. Bliss.

The next morning was spent breakfasting, socialising and getting a manicure. Productive! Here's what my nails wore. Nail polishes have cute names - the hot pink is called 'Ladies and Magenta-men'!

I live tweeted the conference and was so worried the early morning tweeting would chip my polish! It's ok!

On day two of the conference, I wore charcoal and navy.

The dress - which is extremely short when I sit down - is from Myer's Miss Shop. It features peach bird and floral print. And my cape is from St Frock - I just bought it on sale after listing after Cheryl's cape for a year! Boots are the same as the first day - so comfy. I think the cape is a new fashion genre - Corporate Superhero.

And Sunday was a rest day, spent with friends. So it was casual. Adam thinks I look like I'm wearing pyjamas when I wear this. Mrs Woog calls it Comfy Womfy. I agree.

My lavender top is from a local boutique and my pants were gifted from St Frock last year.

I loved dressing up at Problogger. And I loved seeing what others wore. It was never hard to get another person to take an photo either! The first thing Alexx Stuart said to me was this:

Being at Problogger is like being at a wedding - where everyone is the bride- Alexx Stuart

So true! Many of us gushed over fashions. We lifted each other up! And it's not superficial to say that dressing up made us feel good. I wrote about why I post photos of my every day style - because of the positive impact fashion has on me. The reaction to my outfits from Problogger attendees had the same feeling of positivity to the power of a hundred.

More about what I learnt at the conference coming soon. When my brain settles.

How about you? Did you go to Problogger? Stayed home? Post a link to what you wore in the comments :)

 

13 August 2015

How working in a department store gave me permission to take control of how others reacted to my appearance.

 

When I was growing up, I just wanted to be normal. I wanted to have smooth skin – in any ‘normal’ skin tone other than red. I wanted to have my hair plaited by the girls in my class and be invited to more parties. I hoped that others would stop being too afraid to touch me and I tried to win my not-really-friends over with Christmas gifts from the discount store.

It was so hard being different. I wasn’t disabled enough to get the assistance I needed at school (which was a private space to apply my creams and to be able to sit indoors and read or do craft while the other students swam or played sport). But I was just disabled enough for my peers to call me names, leave me out of activities and avoid sitting on the seat I’d just sat on. Teachers would ask me whether I was telling the truth about being bullied. My parents sent me to a church youth group so I could have the chance to form friendships outside of school. But when members of this youth group told me I was a sinner because I am not baptised and because my parents have black and white skin – and that’s why I have red skin, I left. I didn’t understand how my parents could love me so much when I didn’t feel loved by others.

And so I only felt among people who accepted and understood me when I was in hospital. I remember telling my parents I’d rather be in hospital than at school because people liked me ther

But it was when I turned 17 that things changed. 17 was the final year of high school – the end of feeling alone was near. It was the year I got a job, working at a department store for six hours a week after school. It was the year I learnt there was a wider world out there – and people were nicer than I’d experienced at school. Perhaps it was because they had a workplace code of conduct to follow, or maybe they were just genuinely good people. There at the department store I made friends that I still have to this day. I developed valuable life skills there: customer service, prioritisation, leadership and managing work and study. Most importantly, I learnt how to handle questions and comments about my appearance in an assertive yet professional way. I worked there for four years, until moved to a city three hours away, and I only wish I’d started working at the department store earlier.

One day before my shift, I was queuing up to buy a CD. Music was my life then. I think I’d just turned 18, and was still fairly timid. A customer asked me something – I was in uniform so he recognised me as an employee. And another customer referred to me as ‘the lobster over there’. I was upset, but I also didn’t know how - or even if - I could speak up about him calling me a lobster. And so I met with the store manager – a big deal for a junior employee. We talked about ways I could handle customers’ questions and rude comments. I was able to be politely assertive and I had the choice in passing the customer onto a colleague if they were really rude. I didn’t have to work on the main checkouts where questions about my appearance came as quickly as customers’ items on the conveyor belt. This was one of the most empowering things to happen to me. I was given permission to take control of how others reacted to my appearance.

And so today, I don’t think I need to turn every question, comment, stare or taunt into an opportunity for education. I don’t like how strangers feel they can intrude on my life by needing to know "what happened?" or why my face is red. Sometimes they ask me about my appearance before they even say hello. I get asked if I’m sunburnt, told I should use aloe vera and I notice people staring metres away. So rude!

The reason why people ask about my appearance so much – because I have a rare, severe, genetic skin condition called Ichthyosis makes my skin red, scaly, itchy and painful. I was born with this condition, my parents don’t have it (nor did they know anything about it prior to my birth) and there is no cure – no matter how many ‘well meaning’ recommendations or prayers people give me. The condition is medically challenging (when it gets really bad, I go into hospital for wet dressings and intravenous antibiotics) and also socially challenging, as I’ve mentioned.

But I’m not suffering from Ichthyosis. I’m living with it. Thriving even. I work full time in a corporate events role. I’ve forged a writing and speaking career – I’ve been published by publications that I read and have spoken at Australian and British writing and medical conferences. I’ve won some awards (last year I was named as one of Australia’s 100 Women of Influence for my work around diversity). And I’ve connected a lot of people with Ichthyosis through writing my blog. In May this year, I organised the first Australian Ichthyosis Meet, bringing together 75 patients and family members affected by Ichthyosis. 25 attendees had Ichthyosis. Some of the attendees had never met anyone else with the condition before. This event was life changing – my parents tell me it was the best day of their life (and it was mine too!). I’m getting married next year – something I’d never thought would happen. Adam, my fiancé, is the most loving, understanding man and I am so lucky to have found him. While my skin and cream gets all over his clothes, he tells me he likes finding my skin in his pockets because it means he carries me with him when I’m not around.

My difference is a gift. It’s afforded me so many opportunities – and I’ve met some amazing people. And now when I look in the mirror, I am so happy with the way I look. I almost never want to blend in.

This post was originally written for Meg Zucker's blog, Don't Hide it Flaunt it.

Also, I'm so excited to be speaking at the Digital DIY Day at the Melbourne Writers Festival next weekend. You can get a 10% discount to the following session on the weekend -

Enter the code DIGITAL10 here:

The code is valid for the following Digital DIY events (it’s not valid for Digital DIY workshops, seminars or keynote events):

How to be Creative

Writing for a Cause

Making Mags

Bringing Your Brand to Life

Creativity & Motherhood

Writing Your Life (mine!)

Extraordinary Routines

The Business of Writing

Sarah Wilson: Creative Entrepreneur

Money Matters

Community Channel: Finding Followers

 

10 August 2015

How I achieved my goal after a blog conference (and a cute printable for you!).



This week is #PBEvent - the annual Problogger conference! I am so excited! Blog conferences are SO inspiring. Every session I’ve been to has taught me something, and more often than not, the speakers’ stories have given me the incentive to do more. Write more, develop a product, create an event, be a better person. I leave blog conferences so energised and full of creativity (and also a little exhausted due to said energy and creativity!)

Being surrounded by people who just *get* me and being driven to do more at the conference makes it hard for re-entry into the ‘real world’ – where some people think blogging and social media is frivolous, or at worse, dangerous. (I’ve seen a lot of posts from my American friends about how hard re-entry has been post BlogHer. Arnebya, who I met at BlogHer’12 said when she returns to work after BlogHer, the things that hit her the hardest are “the lack of lanyards, tiny desserts, and howling laughter that make her stomach muscles scream”.)

So it’s important to keep the momentum from the blog conference going long after it ends. You can keep that momentum going by setting a goal.

Your goal might be just to write more each day. Or create a content schedule. Or connect with a new exciting person on social media once a week. Or to keep in contact with some of the awesome people you met at the conference. Or if you are like me (overly ambitious), your goal might be elephant sized. Like creating a real-life meet. Or writing a book. Or developing a blog course. (I don’t want to brag but I’ve done two of those since PBEvent14!)

Australian Ichthyosis Meet photo - people in capes

I was inspired to create the Australian Ichthyosis Meet at last year’s conference. And so I did (with a lot of hard work and a few tears). Community and social good was a big theme of the 2014 Problogger Event.

Darren Rowse (Problogger) talked a lot about community at the event. I saw a video of Chantelle from Fat Mum Slim meeting with her blog readers and I wanted to do that. And Pat Flynn encouraged bloggers to create an opportunity for our community to meet with each other.

"Create opportunity for people in your community to meet with each other" - Pat Flynn,PBEvent 2014
These messages were what kept me going from September 2014 to May 2015.

I planned my goal from the day I got home (hurrah for an annual leave day!). And here’s how I did it. (This isn’t about how I planned the event – that post will be coming soon!)

I wrote down my goal.

That kept me accountable. I wrote it in a notebook and on the internet – I was publicly accountable.

I told someone the intricacies of my goal.

I learnt to only tell someone who would nurture my idea as much as I did. I didn’t need anyone telling me that I couldn’t or shouldn’t make this happen. (The people who didn’t nurture my goal suggested I should stop being proud of creating this event. Hence why I learnt only to tell people who would nurture my goals in future.)

I set a timeline.

I consulted with people who were interested in attending the Australian Ichthyosis Meet and gave them a few options of when and where it would be held. And when consensus was provided, I worked to that date. The meet took nine months planning. My baby. 

I connected with people who could help me.

  • I connected with brands at blogging events and via email and phone calls. It was so cool to work with Random House, Mad Man Entertainment, MooGoo, Olympus and more!
  • I asked people who know how to do things that I didn't. Adam made the chalk board! (And for this post, I got someone awesome to make my printable - Robyna May!) 
  • I asked some blogging friends to assist on the day – Nathalie from Easy Peasy Kids was the kids’ coordinator, and Nicole from Champagne and Chips helped with bag organisation and meeting and greeting guests.
  • While I could have written my media release, a friend wrote it for me as I didn’t have time. 
  • Years ago I met a lovely lady in the green room at No Limits. She and her partner were the event facilitators. 
  • I crowd funded the event. 
I broke my big goal down into little goals.

There are lots of steps in achieving a goal. These are all little goals. Working on them and achieving each of these makes a big goal more manageable. My main little goals were booking a venue, raising funds, collecting donations for giveaways, promoting the event so people would come, developing an agenda, briefing the medical team and putting together the goodie bags for the day. Phew!

Do you want to write a book? Make your first goal to create an ebook so you get into the practice of writing and have something to pitch. Then get a literary agent. Then write 1000 words a day. Then organise your book into chapters. Although - what do I know?! I haven't written a book yet - but I'd like to!

I knew my weaknesses.

I’m no good at arty and numerical stuff, so I get others to help me. I am getting better at graphics but I still ask for help.

Maybe you need help with events planning or coding. You can ask others to do these things (DELEGATE!) or you can skill yourself up in them (if you have time!). Take a short course (or check out free ones on MOOC) or ask someone in this field if you can intern with them to learn stuff. 

I played on my strengths and used my networks.

I am really lucky to have been working as an events planner and communicator for many years in my day job, so these skills helped me plan my event.

I also collaborated with some brands for my events – brands who I’d met through blogging. I wrote them email pitches (explaining my event, asking for products, telling them how I would promote them) and showcased their donations on social media. I went outside of my comfort zone, attending a parenting-bloggers’ event, because my new audience for this event was parents.

You build so many skills as a blogger. Writing, photography, marketing, social media… use them! And connect with the people you meet along the way!

I was prepared for hurdles.

Fortunately not much went wrong with achieving this goal. There were a few hiccups but nothing that I couldn’t handle. I had my Mum and Adam to vent to. I couldn’t adjust the timeframe, but I could scale down the event if needed. 

And then  event happened! I remember thinking, I can't believe it's here! I can't believe people came and believed in me! 

Whether you go to #PBEvent or another conference, I know you'll be inspired to do something awesome. Whether it's a big event for lots of people like I organised, or a smaller personal event, I wish you luck! I hope my tips help!

Here’s a cute printable for you to use when creating your goal after a blog conference (or after it comes to you anywhere really – my goal to write this post about goals came to me while I was in the loo!)


Have you got any tips for goal setting?

07 August 2015

Travelling with Ichthyosis (and other medical conditions).

This post is about travelling with ichthyosis, but I guess it applies to many other medical conditions.  I am writing it as part of the Problogger and Virgin Australia competition. I hope it's useful. (It's not sponsored.)

Carly Findlay on Golden Gate Bridge - San Fran - text: travelling with ichthyosis and other medical conditions


I don't have many regrets but one is not travelling earlier. I never saved enough, and always feared it would be detrimental to my skin - which is affected by rare, severe and painful disorder called Ichthyosis. Now I've been on two 6-7 week overseas trips, and want more!

I realised that just like with daily life, travel is not going to be comfortable every day. It's definitely a period of getting out of routine and comfort zones (like showering in a public airport shower - never thought I'd do that but so glad I did as I was comfortable for my longhaul flights!), and my skin changed with the cabin pressure, various outside temperatures and busy schedule. But I couldn't let Ichthyosis stop me. I want to see the world!

I wrote this Facebook status when I was in London at the Generator Hostel - the coolest hostel ever. It was such a proud moment.

I don't usually let anyone see me before I have had a morning shower.

You see, I don't wake up looking like the photos I post here, or how you see me in person. I must put my face on to greet the world - or more realistically, take my overnight face off. Ichthyosis means the skin renews a lot overnight and I wake up with a very scaly, very hard to move face. Maybe like Botox meets facial peel. Hideous.

So it's been a big feat for me to forgo some of that privacy these past six weeks - staying in hostels and with other people. And it hasn't been so bad. I still don't look at people in the eye before I have had a shower but I can manage to go out of my room into the bathroom past people.

Hurdled jumped.


Carly Findlay with Jack and Julie Oldacres
When I was in London in May 2014, I met up with Julie, Danny and Jack again - five year old Jack has Netherton's Syndrome (pictured above). We talked about travel - Julie said she couldn't believe I was travelling on my own around the world for almost two months.

I told her I wished I'd travelled earlier - when I was younger. I've done two overseas trips in two years. Yesterday marked three months since my most recent trip, and two years since my first trip. As I wrote when I returned from my last trip, it's so important to plan ahead and be proactive about communicating your needs.

Julie said she's worried about how Jack will go travelling. She and Danny are reluctant to take him on the London tube because it might be hot. I reassured her that the train is not stifling, especially when I was there - the weather was quote cold! I also suggested they start small with international trips - maybe catch a train to Disneyland in Paris, or a European country close to the UK. Europeans are so lucky with the proximity of surrounding countries. Finally I said to Julie that she could ask Jack's dermatologist if there's a dermatologist at the holiday destination they can connect with. I said to Julie that while I know she wants to make sure Jack is comfortable at all times, there will be times when he might have to wait a little longer for his bath.

After that conversation, I had a think about some of the other things I've done to cope with my Ichthyosis during travel. Julie said she'd love to read my advice, and I'm sure it will be useful for other patients with Ichthyosis who want to travel.

Purchase additional travel insurance.

This is a little more costly but make sure you get travel insurance to cover your additional medical condition. I asked around for insurance providers that do this and a friend who'd had cancer treatment before her last trip to America recommended me an insurer that was more affordable than my bank's insurance. I went with Defence Health - but you should do your research. The basic travel insurance was $100 for my trip - and the cover for my Ichthyosis was an extra $500 - I paid $515 to remove the excess. I was told that travel insurance for America is costly because of their healthcare system, so if you're travelling to other countries, it might be cheaper for you. I didn't claim on my travel insurance for either trip but I felt confident that if I did get sick, I would be covered. The great thing about Defence Health was that my details were on their system from the first trip I took, so I didn't need to provide extra documentation. Had I gone with my bank, the excess would have been $5000 for an existing condition - even if I got sick with a tummy bug.

Collage: at Eiffel Tower, Sausalito, Kings of Leon, Scottish Castle


Pack all the medications and creams you need for the trip.

This ended up a little heavy for me as for seven weeks I took 10 kilos of paraffin cream. But I was worried that I would not be able to get the equivalent overseas at an affordable price. Next time I travel will probably be shorter so I won't need to take as much. My dermatologist wrote me up a script so I could buy double the amount of cream I usually buy per prescription - this meant I would save some money as I'd only pay for one script.

I also made sure I took two packets of antibiotics, enough antihistamine and painkillers to last me few trip - and separated a few of them for my carry on luggage. I know I can get painkillers overseas but my skin has reacted to medications and I don't know the ingredients of some of the American medications so I'd prefer to carry a trusted brand with me.

You can also speak to your doctor about equivalent medications and creams at your holiday destination and purchase them when you arrive.

I also took a travel sized shampoo bottle full of washing powder so I had some when I arrived at my first destination and then bought a bottle of sensitive stuff which I carried around for my trip. I also took a pair of latex free gloves in case I couldn't easily find a packet in my travels.

Well before my trip, I purchased over the counter stuff from discount chemists, which saved me money. I'd buy a couple of things each pay.

Eiffel  Tower  Paris

Get a letter from your doctor and contact the special needs department of the airlines.

My dermatologist wrote a letter which I forwarded to the airlines and I also got my dermatologist to complete relevant medical forms as well. My doctor explained what Ichthyosis is, outlined the type and quantity of cream I would be carrying - plus the purpose of the cream, listed the other medications I'd have and their purpose, and also requested extra legroom to allow me for increased movement on long haul flights, and they also asked for extra water on the flights. It was also stated that I don't have fingerprints which might make security checks hard.

The dermatologists requested I got extra luggage space included for free - most large carriers allow included luggage for medical equipment - and so most airlines I traveled with for the international flights viewed my creams as medical equipment. I just paid for each case I checked in through the domestic flights in America.

Contacting the airlines with my medical details proved to be difficult this time around and I ran into some issues at the airports - that's another story for another blog post. All I can recommend is to persist, tweet the airlines if you have no luck, and visit their office in person with your documentation if phone and email contact fails.

I printed my medical letter and laminated it to show to staff at each airport. I'd show it at the check in and then the security. Most airport staff were fine with the letter but it was very difficult with the Transport Safety Staff in America because of the amount of paraffin I carried. Air New Zealand was AMAZING but some other airlines were tricky to deal with - perhaps due to the cultural barriers around disability. Here is my experience with Air NZ. Locally, Virgin has sought more information about my skin before I boarded.

Here is my medical letter. I am sorry for the inaccessibility of the document - it's a scanned PDF. For those using screen readers, it contains an explanation of my condition, medical recommendations as well as a list of medications I took, and the duration of the trip,  and the trip dates. It obviously had the doctor's name and signature, plus the letterhead on it.



Drink lots of water and eat well.
Travel means amazing food for me - I want to try everything! I ate some amazing food while away, but it was very rich. I tried to have vegetables with each meal and when I couldn't, I would buy a vegetable smoothie. I'd also try to start my day with some fruit.
Cake at Laduree Paris
The air conditioning and heating dried my skin out so I made sure I drank enough water; in Chicago, it was so cold outside and my hostel room was so toasty, but I didn't have a fridge or tap in my room so I'd forget to drink water when I was there. I bought a big bottle of water to keep in my room to stop the dehydration.

Relax on the plane

I wore soft clothes on the plane. Not pyjamas but soft, stretchy fabrics like I would at home in the evening. I took fluffy socks too. And I also had a disposable cloth in my carry on so I could wash my face when I woke up. It was VERY comfortable.

Movies were great, as were books. I prepared my body for a jam packed holiday ahead on the plane trip.

Airpot arrivals board


Plan for rest.

Holidays can be tiring. I was gone for almost seven weeks last year and there were days I just wanted to be at home watching TV. I tried to get rest by going to bed at a reasonable hour when I could, breaking my day into three sections and only doing activities in two of the sections, and making sure I ate well.

I was sick for almost a full week and getting over a cold and chest infection away from home was hard. I can't take cold and flu tablets because they affect my skin. I didn't want to go to the doctors until I was almost dead (because travel doctors cost a heap - and I didn't want to have to explain my skin to a new doctor). I was coughing up infected mucous and felt terrible so I took antibiotics and went to the pub to have two brandy and ginger ales a day. I was lucky to be staying with family when my cold and chest infection, so I was able to rest in bed and had access to lemon and honey. I also grabbed berries and chicken soup from the fantastic healthy fast food stores in London (Marks and Spencer Food, Itsu and Eat).

Carly Findlay in Forrest Gump's shoes, Bubba Gump San Francisco

Network

Travel is a great way to meet people, and of course, blogging can put you in touch with people all over the world. I am so fortunate to have built a big network of people affected with Ichthyosis. I made the time to meet people with my rare skin condition. I met so many people with Ichthyosis in America and England - it made me feel less alone and we all learnt from each other.

Here is Matthew, Michael and Aurora who all  have Ichthyosis - I met them in Chicago. Such beautiful kids.
Read about who else I met here.

Improvise.

I had a hard time adjusting to the different shower water around the world - the water was either hard or soft and the water temperature in each hotel room differed. I hate washing my face with cold water - and when I was in San Francisco, the water was tepid. So I asked the hotel staff for a kettle so I could boil water to wash my face.

I also had very sore skin in Paris and I didn't have access to a bath. I did have a stove a saucepans though. I bought a pack of salt (it was hard to ask for it in the supermarket when I didn't speak French - it's 'sel', if you're stuck in Paris) and some microfibre dishcloths so I could do my own dressings. I boiled a saucepan of water, added a liberal amount of salt plus two cloth, let the water cool, and then used the cloths as compresses on my legs. Infection healed in a few days!

It's not going to be easy travelling with Ichthyosis. You'll encounter lots of questions and stares (when I encountered stares in Paris and Milan, I just smiled and said "bonjour" or "bongiourno" which was met with a polite greeting back), need to explain your condition to many companies, and you won't have your creature comforts of home. But it will be so much fun and so worth the preparation. And don't forget, there's always the online support groups where you can ask for localised advice.

And don't forget to have fun!


Carly Findlay at Paris DIsney

Happy travels! Do you have any trips planned? Any tips?

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