My Fitness is Shite - My Perspective

Put it all into perspective and we can all agree that the only reason I look like I'm relatively fit is all down to refereeing, running after people and the general loathing of sitting still. And just because you have a high metabolism doesn't excuse being lazy. 

Living with Ichthyosis presents its challenges and when it comes to health and wellness, it's playing with fire. You try things and you either fail or succeed. What works for some, won't work with others. What I hope to write down here is a breakdown of the way I work around my fitness and its obstacles. By the way, I am no doctor, but simply describing what works for me. 

When it comes to running, I'm a sprinter. I don't like short distances very much and  with long distances, it's a lot easier to pace myself and work my way around. As a rugby referee who does an insane amount of quick turns to keep up with the pace of the game, it's a work in progress. Our referees fitness trainer is helping me master the turns with cleaner efficiency without the fear of damaging my knee, which lets be honest, is probably in a terrible state as I write this! 

I haven't always been this fit. In school I didn't really take part in PE lessons much for a couple of reasons, 

- the weather was playing mind games (remembering HK is a hot and humid wasteland)

- I was repeating my AS Level Art qualification (we don't talk of this!)

- I just didn't really get my arse in gear

I think it was only when I joined the referees fraternity at about 16/17/18 when I realized that if I wanted to get better games and move up the ranks, I was going to need to up the ante and get with the programme. I think it did slightly shock my ex PE teachers when news got out that the lazy got got her arse in gear and was caught sprint around pitches. 

One big thing about Ichthyosis is the risk of brittle bones and osteoporosis. This is what kind of got in the way of things. But with the help of my wonderful family doctor, we started working toward making my bones stronger with vitamins and lots of good stuff. Because of this, I can worry less about my bones shattering and more about my real goals. 

So back to what I do. 

So Wednesday nights, we have fitness training where believe me, the bar is set pretty high by our trainer Wai from Pinnacle. This season, I don't think I've actually come away from training without cursing him from under my breath. But for all its worth, the drills, the circuits, the pitch laps, timed runs and more, it's all paid off as keeping up with the players and their 12 year old pace is not nearly as painful as it once was. I also honestly believe that training with like minded individuals really ups the motivation levels and it's equally important to work with someone who you have a good connection with. I've been lucky so far in having some great trainers who have yelled, cajoled, encouraged and dissed me as I train. Character building I tell ya!

If I happen to have a good week where I'm back in Sai Kung in the early-ish evenings, I like to try and get myself on a road run from our sleepy little village (some may argue that point) and up a couple of slopes and roads which ultimately leads me into Sai Kung Town. This is a roughly 4km-ish venture and is a good way to pass time while the washing machine load does its thing. Bear in mind, this isn't a full on sprint, but a steady run. I would never sprint up a steep slope where I live...I walk up those parts before gathering the pace again for the flatter parts. This, depending on my pace can be done in max 45 minutes in cool weather. But we will revisit this in the summer. 

I also wear a FitBit flex. I like to wear something that counts my steps daily and makes sure that I am on my feet often. The recommended step target is 10,000 steps, but I push my buttons and aim for 13,500 steps at least! I find that it gives me satisfaction that I've not been sitting on my lazy arse at work all day when I feel that vibration on my wrist telling me I've hit my goal for the day. 

Nutrition and hydration is also key to a decent level of fitness. Now I'd like to think I'm pretty disciplined when my eating habits are concerned but here we go. 

The average Ichthyosis person should ideally be downing roughly 10,000 calories a day. And to think that the average person usually eats 2500 a day. That just scares me shitless. And no, I don't hit the 10k mark. My wallet would hate me so much. I think that in reality, most of my wages go on food. Yeah. I know. 

As with most humans who work, the mentality is that at the beginning of the month, you eat well because your wallet has been restocked. But by the end of it, well, instant rice noodles are right up there. 

I eat a fairly healthy feed which all depends on my activities for the day. But as a base, I'm not overly keen on processed foods but sometimes, needs must. But some of my favorite things to eat and drink include, 

Sushi, 

kale chips or raw veggie chips

meat, 

rice (not the sticky kind you find in a rice box) 

Mixed fruit and veg Juices

Kombucha 

Nuts

Water

Anything that packs a major punch of flavour. It's dull eating something that's not colourful or full of flavour. 

I'm a big fan of whole foods as I have learned, rather belatedly. that you are what you eat. And while things like quavers, pork scratchings and all that processed comfort food is not the most nutritionally packed thing to eat, I won't hesitate to eat those too, in moderation. That's the thing, if you look after yourself, I don't see why you can't treat yourself every now and then. If I want to have a bag of crisps or sweets, I will, because I know that in moderation, I'm not killing my body completely. 

If I've been to training or I've done a morning of refereeing, my first thing to do afterwards is shove some food into my mouth as I refuse to eat two hours before heavy intensity workouts. And the sight of your last meal on the pitch can't be a pleasant sight! But I might throw in a protein shake or some form of liquid and down that, just to keep me going for long enough. I really have a love hate relationship with protein powder as it's hard to find an affordable one which tastes okay but doesn't have the crap that normally goes into them. I'm a fan of the Vega protein range which is plant based. If I'm refereeing, I like to mix that with a peach flavoured Isoflex protein powder. So I'm getting an absolute protein punch. It tastes vile of course, but when it packs in over 30g of protein and holds me for an entire morning, I shan't complain! 

Hydrating is a massive thing for me as well. It's not uncommon for me to be carrying around a big bottle of water. When I do remember to put in, I absolutely love my 1ltre Camelbak Chute bottle which despite the abuse I put it through, somehow still looks amazing. But for me, drinking liquids for me is a big thing. I'm a sucker for coconut water after training. But as I mentioned before, if needs must, I will also drink sugary electrolyte drinks to rebuild my energy. I'm a fan of Lucozade energy and Pocari Sweat. 

And no I don't run barefoot. For a road run or when I forget my boots at training (shock horror!) I own a pair of Asics Gel Nimbus 16s bought for me by my lovely grandma last year. Yes they're expensive, but they have offered me great cushioning and support for my heels as I run while digging (don't ask). For boots when I'm refereeing or on turf or a grass pitch, it's not difficult to find me in purple zebra patterned X-Blades. Comfortable, but light, those are my babies. 

Now, dear folks, what I've written today is what works for me. What works for one, may not work for someone else. I'm constantly learning about my own limitations and what works well. One thing in particular is the foam roller and deep tissue ball. I'm fairly high pain threshold and actually love the feeling of further abusing myself after fitness sessions. But with others, their skin could break with the spikes of the roller or deep tissue ball.  

I wanted to write this because as someone with Ichthyosis and a somewhat compromised body, I wanted to throw it out there that with the right balance and structures, it's certainly possible to embark on a fit life. It's all about common sense, motivation and a desire to be the best you can be. And talking to professionals works a charm as well!

AN: I've included brand name products in this post. Not because I represent them (I don't), but because these are the products I know, love and trust. And if I get a request to be a brand rep, awesome! 

The Girl Behind The Face...and other things

So it's 2015 and its a new year. Should I be happy or groaning? Well I simply cannot answer that question right now. There are a flurry of things happening right now and I'm going to list a few things and a request right here. 

It's been a long time coming but my parents and I are trying to bring a book out to everyone! "The Girl Behind The Face" is a book that explores special needs, acceptance, overcoming trauma in life, resilience and coming out (hopefully!) smiling. The hope is that through this, people will be encouraged by our story and know that it's okay to smile and try to embrace life. 

Of course not everyone is quite able to let go of tough times so easily, but I hope that the book also raises awareness of acceptance of others in an otherwise cruel society. 

The hope is that by both "liking" and "sharing" the Facebook page, we will hopefully find someone who wants to come forward to help bring the book out and into your laps, be it on a Kindle, iPad or paperback. 

Please click "Like" on this following Facebook link!

https://www.facebook.com/GirlBehindTheFace?fref=photo

Don't forget to "share" it as well!

Happy to say that New Years Day rugby went off without a hitch and no known injuries have been reported on my part :-) I must say, getting to do the first match is really fun because you're setting the tone for the rest of the day. And hearing my name over the loudspeakers was also something new. I look forward to one day being 'the one in the middle'! These few months are pretty busy hereonin because there are finals and championship games to be played. Typically the League games and minis festivals are done and dusted just before the HK7s held at the end of March. So lots to do, hopefully I'll be getting right stuck in for those. And hopefully I'll be back in the control tower again this year, causing havoc :-) 

I'm very excited for the end of this month because I have a guest post by my good friend and Harlequin twinsie (she's younger, so technically not twins!), Hunter! Having known her for a long time and literally reconnected by the power of social media and iPhones (we both like Apple products), we are close friends.

 I was at Sailing the other weekend, when Hunter was in a documentary shot some years ago, came up. I was approached by a sailing mum and asked if I was on TV. She was slightly shocked when I said no, because she swore I was in the documentary! Now, I would have been flattered by that, but even though Hunter and I share many similarities, we both sound very different, she has an American accent, whereas as my friend Andie puts it, "whalish" (poor chap refuses to accept there's such a place in the world called Wales, he's Canadian!). Anyhow, accents aside, I think it took that encounter with her on TV for me to realize that actually, people with HI share a lot of similarities. Bone structure, skin(nah, really?) and facial features. I explained to the crowd, now gathered around the flat screen television that yes, I know Hunter and yes, we are similar. I then surprised everyone by Face timing Hunter and had everyone from sailing say hello to her, while at the same time, pointing to her on screen! The mum at Sailing said to me, "if I hadn't turned around, I could have sworn you were Hunter!", I then reminded her that she does sound different to me! You have to work on your British accent, Hunter!

I think it's taken getting back in touch with Hunter to realize that people with Ichthyosis have a tendency to look alike, and I don't just mean that by skin tone, but stature, facial features, etc. I've had people actually come up to me and ask me if I was on American television or on the Jeremy Kyle Show. Because people with HI look alike, I have been mistaken for Hunter or Nusrit. Of course, people know know me well, know full well that I'm not one to go on Jeremy Kyle, because quite frankly, I haven't run off with another man or whatever happens on that show! But that's the stereotypical vision of the man. The oldest sufferer with HI, Nusrit Shaheen WAS on Jeremy Kyle in an episode full of inspirational people and I have to admit, it did make for some good lunchtime YouTube watching...just that one! I was on the bus the other day and a woman with a very strong Northern English accent turned around to me and asked if I was ever on Jeremy Kyle?! The look I gave her was priceless, followed by a funny conversation about the ins and outs of that show.  

I remember quite clearly actually, when I first got in contact with Carly Findlay when I was about 17 or 18. I posted a picture of me in my graduation ball dress (a beautiful lilac Elie Saab-inspired dress, think Mila Kunis' 2011 Oscar dress). Carly commented on it and mentioned that we, as in Carly and I both shared similar bone structure and that we both looked alike. Bear in mind, at this point, I was in no mood to have people telling me I had the same bone structure  as another ichthyosis person. I was still in denial about the whole Ichthyosis thing and convinced that I was like everyone else. I "snapped" back with a snippy comment and got a resounding slap on the wrist by PapaRef for being rude. I apologized and things were left at that. But it was still very uncomfortable being compared to other Ichthyosis sufferers.

But it wasn't until I started chatting and FaceTimeing Hunter when I began to realize, that actually, yes, we do look very similar. Sometimes, when I chat to her, I feel like I'm talking to my mirror image and that's a bit creepy! We both share certain mannerisms and are quite open and laid back. And it helps that our families know each other well too! I'm hoping that in 2016, we will see each other again for the skin conference! 

Okay, I've just added coconut oil to my scalp and it's time to let it settle in! So it's goodnight from me!

Xx

My Year and Other Bites of My Life

My year. And more.

The year 2014 has already come to an end an it's been a weird journey filled with Highlights and definite lowlights. I've made friends, I've gained experience (maybe) but I've also lost. But hey, what's others loss is another's gain, I suppose. 

I've struggled a lot this year with accepting who I am and what defines me. It's taken trials and tribulations to realize that life is not a bunch of roses and hard work needs to happen to make things (positive) happen. I'm so afraid of failure (which is ironic) that sometimes I block all that is bad in the world and focus on the good things. It's a good stance for some situations, but certainly not all. It can take one step forward towards positivity, but ten steps back to negativity and that's something that definitely sucks. But hey, that's life...only took 22 years to discover that. 

I've been abundantly blessed to be connected social media and a part of the ichthyosis community. I was so frightfully nervous about opening up about my ichthyosis on Facebook because I've tended to use Facey as a platform for my hang ups and unhappiness at the world.  But I've realised that through forums and such like, there are plenty of people in the same boat as I am, and that it's okay to ask for advice from others regarding lifestyle and skin care. And I've realised, now, that ichthyosis is just another thing that makes us unique in who we are. It's like a community of people or shall I say sufferers who bumble along together and that no question is too simple or difficult because as they sing in that dreaded High School Musical song, "We're all in this together!"  

I've been fortunate enough to get back in touch with Hunter Steinitz and her daddy which has been so good! And with the beauty of iMessage on our iPhones, we are able to message more regularly and if time allows, even a sneaky FaceTime session. I've also gotten to get to know Stephanie better and even though speaking is an obstacle...(try a deep Southern accent vs a British one...it's hard!) we've recently started chatting on iMessage as well. So here's a callout, if anyone fancies having a hot and smokin' British Chinese Harlequin kiddo in their iMessages, let me know :-D

And come what may, maybe my skincare will continue to improve as I find things on the internet to try out. For example, have you ever thought household bleach in the bath could actually help combat skin odours, especially with ichthyosis skin buildup?! Well I didn't and thought it was a crazy idea but hey you don't know till you try right... I was all set to swear when that bleach bottle was opened tonight but funnily enough with hot water and a dash of bath gel, (I use Adidas Sports wash for men, by the way, it goes pretty deep into my skin and I like the deep ocean scent. Each to their own!) the bleach doesn't cause such a "oh mother f*ck" type of reaction. In fact, when I did it tonight, I was able to scrub off large and small flecks of skin leaving me with a moderately scale-less body, bar the feet which I'll tackle with, using an electronic foot file which I'll buy later on. damn, the skin under ones feet can really build up and is super painful even if you soak it. Time to try new methods. And experiment!

You may be shocked, but, dun dun dun, I've been reading a book. I mean A BOOK! Well I was reading the Daily Mail online as one does in the morning when I came across an article about twins, Sam and Anais who found eacother through social media, quite by chance and luck. Having been separated and given up for adoption at birth and raised in two completely different parts of the world, it's like a real life version of Lindsay Lohan in The Parent Trap. Having read articles and watched interviews of them, I was intrigued when I saw there was a book published called Separated @Birth, a love story of twins reunited. Though I was born in Hong Kong and not South Korea, I felt compelled to read a book, not just about twins finding each other after 26 years, but about the topic of adoption as well. I would think by now, all of you know that bit about me :-) The book has me thinking a lot about my own self and I'd highly recommend it for anyone to read, it's not everyday twins find each other via YouTube! And somehow I doubt I'm a twin! Here is an Instagram shot of my copy! Ignore the emails and free spirit keyboard cover :D

I've skirted around the subject of adoption for a while and while I have been abundantly blessed with a good life, even if I may cause more drama in time (I was a born drama queen!), I've been thinking more about the situation surrounding my own adoption. What if what we know now has been fabricated. There are tons of "what if" thoughts and what if it was a regretful mistake on the biological parents part. Of course I'm being paranoid, but there is sometimes a longing to find out whatever you can, surrounding your physical existence. For example, how alike are we?! Are there hereditary medical conditions (apart from Ichthyosis) that I should know about?! Why, (and I mean more like, WHY THE HELL) did you,choose to bring a child into the world, only to relinquish your rights?! How did you feel?! Do you still think about the child you gave up?! Does my biological mother have massive boobs like me?!(sorry, needed some humour in this!)

All these questions can race around in an adoptee's mind but for the most part, the most important thing is to know that what one set of parents lost, was another set of parents' gain. And I wouldn't be sitting here writing this blog otherwise.

This sounds awfully morbid and self loathing, so swiftly I move on to more exciting moments of my year. 

Rugby refereeing is still happening and it's keeping me on my wee toes. I love being on the pitch and being the boss. I've now got an awesome mentor who I can discuss my games with and hopefully with the new changes, I'll be able to progress up the HK refereeing ladder. My dream is to make it as high as I possibly can, though it's a tough hill to climb, I hope to make to World Rugby (Previously IRB) level. But first I need to make to past ARFU and that in itself is a challenge I'm willing to hit right on the head, come what may. I'll be running touch again at the 2015 New Years Day Tournament, running with the U12 girls. Though New Years Eve might be a bit of a wrecking ball for me, New Years Day is a pretty big thing for me to even make the squad. So that's on my agenda and I'm so determined to be the one in the middle soon. Plus I do hope to avoid a repeat of last years' knee saga. I now know that my knee has started to rub against bone on bone, so I just need to be more careful and bind up...that should be it...right?!

The weather in Hong Kong has been frightfully nippy with temperatures down to 10 degrees Celsius at times. Truthfully, I adore it because I can accomplish so much more that when it's hot and humid. But let me tell you, Hong Kong is a sub tropical city and cold winters are nobody's friends here. The funniest thing for me is when I see people on the train in the morning, wrapped up like Eskimos when in truth, outside is only 18 degrees Celsius. Some people have the mentality of, if it's metaphorically winter, the massive North Face jacket will come out! Luckily, through 3 years of good work, I've managed to condition my body to withstand cold temperatures while wearing shorts and just a hoodie. I've been called crazy before! After all, I've refereed in Baltic conditions (and by Baltic, I mean 10 degrees) wearing nothing but my shorts and shirt and polyester socks, come rain or sun, so I'm quite happy to trudge around in shorts and a hoodie because that's what I'm comfortable in, most of the time. I do wrap up for work though, there are certainly dress codes! I've been stared at before, I've been told to put more clothes on, but the fact of the matter is, I adore winters in Hong Kong, cold days, short daylight hours, ability to,push myself harder at my sporting activities, it's great!

And did I mention I've just turned 22 this year?! Sh*t is about to get real???or won't it?!

I pray and hope that 2015 brings you peace and love. With lots of kisses,

The IchthyRef xoxo

I know...I have friends!!! Meet two of 'em...Bryan and Graziey!! 

The IchthyRef does Q&A Part 1

When I started this blog, I had a thought.

 Having HI is a rare event and along with living away from physical face to face support is sometimes tough when I want to find something out. Being in the older tier of sufferers, I'm up with, Nusrit Shaheen, Ryan Gonzales, Stephanie Turner, the Betts sisters and Hunter Steinitz. To have clung on for this long is a pretty cool thing to have achieved and I will brag about it! I sent a message to a few Ichthy mums with a plan to do a Q&A about Ichthyosis and life for me in general. If I can give a tiny insight into living a life with Ichthyosis, then I will try and tell it as truthfully as possible. I got lots of questions and I'm working my way through but here is Part 1. With permission from the mumsand friends, I have shared their questions along with a link to their own individual websites.

D.e. Fasciano

I was introduced to D.e. and Evan through Facebook a while back. We have a ton of mutual connections through Ichthyosis Support on Facebook. Truthfully, it's a little hard to remain incognito on Facebook, but here we are and she's sent me a couple of questions. D.e is from the States and has a son with HI called Evan and another little bub on the way. Their website is:

http://ouryoungwarriorevan.blogspot.com

D.e. asks:

What is your skin routine like?

My skin care routine is actually really lacking in continuity and pattern. Each morning involves a quick(25 mins approx) bath in my Japanese inflatable bathtub. It's not common in Hong Kong to find a house with a built in bath tub due to lack of space. I have a removable bath tub in which I have my daily bath. After using either hospital-prescribed emulsifying ointment or regular shower gel or whatever happens to be on the window sil, I then follow that with a liberal smearing of paraffin ointment or if I'm feeling in the mood which is incredibly rare, urea cream. Then it's off to the bedroom to choose my clothes for work, typically jeans and a tshirt. I've found that most materials are okay on my skin, but one thing I prefer to avoid wearing are tights. I have a love hate relationship with them as I've found that my skin dries out faster when I wear them. I carry a couple of jars of paraffin ointment in my daily backpack and I try to make a habit of keeping a pot on my desk so that if my arms and face get a bit dry during the day, I have a supply on hand. Admittedly, I do not do full body creams more often than that one time in the morning and possibly after my evening bath (if I manage to not be lazy about it). I should probably do it more often, but since Hong Kong is incredibly humid pretty much all year long, except for maybe two months in winter, I certainly don't reapply as often as those in drier climates. Maybe I should. I should point out that I sometimes use Bodyshop or Lush products in the bath. I like these brands as the products are gentle on my skin and are made from mostly natural ingredients. They are not cheap though, but I do like to treat myself from time to time :)

Does your skin hurt when you get sick (fever, cold)?

I'm relatively healthy but like everyone, I do get sick and I've found that intend to suffer more if I overheat in the sun. Skin wise, I suppose I could liken the feeling to feeling sunburnt. If I have fevers, which still happen, either consciously or subconsciously, I have experienced something that's tantamount to being slapped with a brick wall of heat and it takes a thermometer, lots of ice water, fans, air conditioners and maybe some regular paracetamol and a cold bath dunk. Luckily, I get more sunburnt than fevers these days. But living in HK especially, the worry of getting sick is never far away. 

 

Does the ocean water bother you? 

Or did it when you first tried swimming in the salt water?

This is really interesting actually because up until about a year ago, I avoided going into sea water as I didn't enjoy the salt getting onto my skin. However, over time, I've realised that as long as there is clean water supply nearby, I'll be fine. You can't actually stop me going into the sea if the chance allows! I do stay away from super dirty water though, I'm fussy in that I will only go into clear waters!

Do you notice a difference in your skin in HK compared to UK visits?

Dry and more cream. The temperature is a pleasant change though! In all honesty, I haven't been over enough times to really give an opinion. Health wise, I suppose I'm breathing cleaner air than the polluted air of HK but skin, I've found the climate is drier and for someone who is acclimatised to the humidity of Asia, coming over to the states or Europe is a bit of a shock to the system. But as with all people, you get acclimatised to where you live and you just may be used to creaming more often that you don't really notice the dryness. 

Lucy Betts

I've known of Lucy for a long time, way before Facebook came to the fore and if memory serves, the Betts and my folks used to communicate to learn more about dealing with the little terror that I am!

Lucy asks:

Do you find you have other health problems related to your skin?

I wouldn't say I'm completely problem free as I have had a couple of situations with weak bones and my lungs aren't truly amazing as my skin was wrapped so tightly around my body when I was born which restricted some lung function, but so far so good. I'm very very lucky that I have a family doctor who looks after me incredibly well and I am forever grateful for her presence in my life as she has picked up on things my hospital doctors haven't. Not to say they suck, they're amazing people, but sometimes, time and clarity is compromised in a busy hospital environment. I've had a period of iron deficiency, solved with chocolate flavoured chewable tablets, I'm yearly monitored for bone density (now in great shape). I'm lucky that I'm relatively fit and my doctor reckons that with the activity I do during the sailing and rugby season, my immune system and overall well being has greatly improved. I hope it stays stable. 

Do you find you have a lot of allergies?

Luckily, touchwood, I haven't experienced any allergies, yay me! I may have tried to fake an allergy to get out of eating a certain vegetable, but I'm sure we've all been there! And I still won't touch broccoli!

Can you go on the beach without it irritating?

I've answered this question already. As long as I'm cut free and there is clean water supply nearby, I'm absolutely fine. 

 Do you find being out in the sun hard?

I'd love to say I'm so used to hk and it's bright weather but truthfully, I find it difficult because heat is trapped in my body, which means sweating is not an easy thing. Although I may post pictures of me being out in the sun, I do try and stay in the shade as much as possible, I use wet shirts or if I'm out doing outdoor activities, I rinse my shirt under a cold tap before putting it back on. It keeps me cool for a bit and I sometimes do the same to my hat and maybe my shorts. Instead of just drinking cold water, I sometimes drink sports and electrolyte drinks because not only do they taste reasonable, they also give me a bit more energy as the sun does wear me out. A couple of time more than not, I have come back home sunburnt out of stupidity. I just deal with it with some ice and aircon and maybe some aloe Vera gel and I'm good to go. I'm lucky in that if I get sunburnt, the effects are pretty much gone by the next day. 

Jennifer See

I met Jennifer through Facebook as she helps try to connect sufferers and their carers. Like D.e, I saw her name floating about and resisted clicking the "accept button" because at that point in time, socialising with people with Ichthyosis was not on my agenda, I feared did be stereotyped. I wanted to pretend that I didn't have a condition. But sometimes, life doesn't pan out the way you want it. But I'm so glad to know Jennifer as she's a fabulous "ear" when I feel compelled to compare Asian cultures against Western cultures(Jennifer has a really awesome mixed race family!)

Her website is

http://confettiskin.com

Jennifer asks:

What's the most bizarre thing anyone has ever said to you about your skin?

I was with a friend at her school fair (we went to different schools, though I very nearly moved there) and as we were about to grab a taxi to leave, I nearly knocked over a teacher carrying her camera. I apologised, she looked up and remarked, "wow, that's a pretty impressive face painting you got there! Can I take a photo?! (I rarely bother slapping paint on my face, it looks wrong!)". I was stunned, I turned away and climbed into the waiting taxi, shocked and the on the journey back, it hadn't really hit me that hard. My friend and I just laughed about the pathetic nature of it and to this day, we still giggle about the absurdity and innocent ignorance of that teacher. 

 How do you normally handle rude people? 

I don't! It's incredibly irritating and I try not to waste my energy on the stupidity of certain people. Though it pisses me off to no end when mums shield their child's eyes, the best I can do is roll my eyes and be knowing that those people are narrow minded. I have done worse things in the past. But unfortunately, with life comes challenges and sadly, I will likely have to deal with arseholes for the rest of my life. It's a matter of finding a way forward. Knowing chinese cuss words helps...sometimes!

How does the culture in Hong Kong affect your ability to network with other affected people in the city?

I don't know what to make of HK culture, on one hand, it great that people are willing to share good moments, but when tragedy strikes, getting anything out of people is like prying open a stubborn mussel. Locals tend to keep bad news and misfortunes to themselves for fear of coming out as weak and shunned. I haven't really had the chance to meet any affected Ichthy sufferers in Hong Kong. I did try corresponding with a mother with a Nethertons baby but kept hitting brick walls to the pout where I just let things be and told her, if she wants to meet or know anything Ichthy related, I'm there. And I expressed that I do understand the nature of living in HK with a disfiguration. However, I have been lucky in that because of my nature and will to fight, I am more at ease about meeting other sufferers, just not sure if HK is really ready to tackle through like I am. 

That's Part 1 done, I'll work on the next batch soon!

Xxx