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!! 

Amazeballs - That's Why I'm Thankful :)

Why am I grateful to have Ichthyosis?

Don’t judge me, for I’ve not written anything for November…what a bad-ass!!

I’m British Chinese, I live in Hong Kong. Thanksgiving is just not my thing, though I do have American friends who are susceptible to my endless American piss-take quips. But wait, I may have told a weeny lie. We DID celebrate Thanksgiving at work. It was mainly food and game filled. And if a party fills me up with food, I shan’t complain.

But still, harking back to my point, I think that being thankful for things in life is important and here is my list.

I’ve borrowed this amazeballs idea off my friend Stephanie Turner and Carly and I have decided to follow suit…that’s what bloggers do right?!

1.     I am grateful for simply having life. Without life, none of us would be here and I certainly wouldn’t be. I have many difficulties in  my life with having Harlequin Ichthyosis and being adopted. But I’m thankful for having a shot at life, however long or short that might be.

2.     I’m grateful for having Ichthyosis because it has afforded me a life of interesting moments and fabulous oppurtunities.

3.     I am grateful for having Ichthyosis because over the years, medicine has evolved in such a way that many people have stepped forward with offers to make my skin and general wellbeing better without the intrusion of hospitals and scary machines…thank you Lauren Bramley and Partners, you guys are amazing!

4.     I’m grateful to my parents because without Ichthyosis, they would not be my parents. They guide me, they nurture, they push, they plead, but most of all, they love me and have molded me into a goofball. I may have slipped into oblivion in recent years, but my parents have been there to try and help me back up onto my feet. It’s a work in progress but I’m super thankful for those two!

5.     I’m grateful for having Ichthyosis because it means I have something interesting to tell the world. I have the unique sights into what could be considered an exclusive club of those with Ichthyosis. I know that this could be a great opener to any conversation with a stranger. Can you imagine? My name is Mui Thomas and I have Harlequin Ichthyosis?!

6.     I am grateful for the fantastic Ichthyosis community. In a world that is constantly connected by social media, it’s so much easier to communicate with other sufferers these days as opposed to 15 years ago.  Being able to exchange ideas and provide suggestions to fellow people with ichthyosis absolutely takes the edge of some of life’s most intense moments. It’s also lovely to be able to understand how other people live their lives.

7.     I am grateful for the friends and aquintences that I’ve made over the years. You guys never cease to crack me up. And you know me for who I am, the skin is just another piss-take J

8.     I’m grateful to have a blog which people actually bother reading. Thanks folks!!

9.     I’m grateful for the local community in which I live. I’m grateful for the rugby oppurtunities, even if I am still a sucky referee, the contacts and friendships within that. I’m grateful for the chance to help out at special needs sailing, I love the whole of Sai Kung!

Right, I’m going to sign off because it’s eating time for me!!

PS. I’m looking to spruce my page up a bit more. My layout doesn’t exactly scream fun and Welsh, so if anyone would like to suggest templates…please do!

xx

I'm Not a Peanut!

People say I'm nuts, for what I do to myself. I hope there are no nut allergies here on this blog! 

This thing has turned monthly, I'm sorry! But I just figured that writing something monthly could be a whole lot more interesting than trying to concoct a daily post, both mundane and boring. Something less frequent might be a bit more interesting, wouldn't you say?!

Let's start with October, a relatively uneventful month, eating, living, a couple of medical checks for the darling leg and a bit of assistant refereeing. 

Possibly my top AR highlight has been at my old school, KGV. Not only was it an exhilarating match, but seeing as it was October, my good self was able to carry through almost to my full standard with very few puffy breaths and a good need for speed. The weather has cooled down too, thank hamsters. Hopefully more is to come. For me, having HI does not really limit how fit I am, at least as much as I thought. Like anyone, i want to be fit and with the programme, that comes hard work, core muscle training and a kick in the arse for being pathetically slow during sprints.  That being said, my best work is done when it's cooler, around this time. Tonight, 29th October, I feel like I'm almost back to full strength. I attended usual Wednesday night training and felt good for the first time this year. I've got a double dose of action this weekend with the first Mini Rugby festival coupled with a 24 hour charity dinghy race.

I really enjoy the 24 hour race as it's a party atmosphere and the Hebe Haven Yacht Club comes alive with teams from all over HK and overseas. Looks like I'll be doing graveyard shifts again this year which I detest to an extent because the wind levels drop I'm the middle of the night. I enjoy telling people last year that it took three hours to complete my shift, on the boat at 2am, off at 5am. There was very little wind and it was chilly too! Must remember the jacket this year! I will also be hot footing it to Kings Park in the afternoon to referee a bunch of matches in the Under 10s category. This should be very interesting as it's the first rugby tourno of the year plus I'll be quite sleep deprived. So please, if anyone sees me walking around aimlessly on the pitch on Sunday, hand me a redbull or a dunk a bucket of ice on me and I should be good to go! Or just give me a gigantic hug!

Okay, enough about fitness, since I'm sure half of you are probably curled up on the sofa feeling sorry for yourselves. I wanted to touch on a topic that I get asked about a lot, having HI. And that is, Am I in any pain? And the answer is no. Or more along the lines of, "I know how I feel, but that's probably different to you guys". Of course I feel sore sometimes, but there's nothing a rub of aloe Vera gel cannot heal. I find that when I feel sore when I am warmer after an activity, then yes, but that rarely, if ever  evolves into anything else. If I'm sore, it's mainly self-inflicted and not quite skin related. 

Another super exciting thing from October is that for the first time in 21 years, I'm changed my hair color. Okay, so it may be a dip-dye (ombré) but it's pretty high up, you'd probably think my whole head is ginger-blonde. , I used a cream dye instead of a more liquid dye and I've had no chemical reactions after a blob got on my skin. Aside from it burning slightly, there was no problem. So maybe in the future, I may try a whole head of dye, I'll just wait for my hair to grow a bit as I hear that bleach is for keeps and I'm not sure I'm ready for the shaven look!

Thank you for tuning in to another IchthyRef blog and I can't wait to see you guys in November, where I'm sure events will be as fun as always! 

Xx

How I Deal with the Minority - Usually the Village Idiots

I read a blog of Carly's recently about intrusive strangers and while what the baristas did was somewhat uncalled for, I wanted to offer my take on something which ultimately affects those with differences. Both visually and cognitively. 

People will stare at each other often on a daily basis. It's all par for the course in that you will be stared at if you have a cool top on, have the latest gadget, have a cute spouse on your side. But more to the point, people with Ichthyosis will often get grief from others. They will ask about why you are the way you are. 

Living in Asia, it's a relatively westernised, albeit nosey society where anything out of the ordinary is met with a double take and maybe verbal reactions. 21 years folks, 21 years and I still have not perfected the art of offering a sufficient explanation for why I am the way I am. 

I will get Chinese people staring at me, Filipino ladies double taking me, kids pointing and screaming...it goes on. It's only recently that I've become slightly more comfortable with people asking me what's happened to my skin. I'm okay with people asking because it shows that they are genuinely interested to know why I look like a sunburnt strawberry. And to put it mildly, my latest explanation went something along these lines, " okay kids, so you know how there are people in the world with black skin, red hair, they may be brown, they may be ginger ninjas? Well, I'm no different, my skin is just a different colour and my skin comes off too!" This usually is then followed by me inviting them to rip a bit of skin off my arm. I do not suggest this by the way! I have a friend called Jen, who worked with me for a bit but we are great firm friends. She is literally the only one who is allowed to physically take my arm, look at my shoulder for loose skin to pick before taking a snap and sending it via whatsapp to her boyfriend. Strange child. But I try to be forth right in how I explain the way that I am. Some days I don't have my mojo and I'm not so inclined to be so nice. To put it mildly, if people are curious or are staring at me, I turn away and mutter some incoherent Chinese. This is usually first thing in the morning.

I understand that sometimes the intrusion can get too in your face and you just want to press the stop button. But unfortunately, the Doctor Who tardis does not exist and nor does Harry Potter's invisibility cloak. People will intrude on your life and especially because we look different, you'll often be the subject of interest and questions fired from all directions. Fortunately, for me, things are gradually getting a bit easier. There are good days and there are bad days. Just got to roll with it. And believe me, I am also guilty as sin for reacting as well to unusual things. No one is perfect in that they have never intruded on someone else's life. 

Onto a bit of rugby now, this correlates to this topic. Having HI completely goes out of the window when I am on the rugby pitch, holding that Acme Thunderer whistle commands the sort of behaviour which requires respect without judging. There has, touchwood, been no instances where I have walked onto a pitch and a coach has asked me to leave because I may scare the players. I have seen players speak to their coaches, commenting on my appearance to which the coach promptly and sternly tells them to get on to the pitch, no buts. I like how especially in the HK rugby community (which is bloody massive), no one intrudes on my appearance, they do however, intrude on my stupidity at times. But I'm okay with that.

I've learnt to accept that intrusion is par for the course and that if you can't handle it, well, sorry, but you've gotta plough on, because it's one battle that only you cannot win. You cannot dictate the behaviours that go on around you, you cannot dictate how others choose to know you more. I'm certainly slightly more creative in my explanations to people and that's the way it goes. And I'm cool with people approaching me and others to know more about HI. I have a cool bunch of people around me who are always at the forefront and I don't give a toss if they tell others about my condition, because it means when they do that, one more person in this world will know about Harlequin Ichthyosis. And that's awesome.

By the way, on a side note, I bought some onion bhajis tonight because I was hungry and they were amazing! 

"The Lean Mean Eating Machine"

By the way folks, that quote comes from PapaRef and MamaRef...not my own work!

I'm a big eater. It's common knowledge amongst my family and friends that the IchthyRef eats a lot. I've been very lucky that I've always been able to eat, without the need for medical intervention and gtubes. 

To give you an idea, I can work my way through a whole plate of Yueng Chow fried rice, a few helpings of mixed Chinese vegetables and maybe all the pork from a plate of Sweet and Sour. That's Chinese food. It's not all quiet on the Western Front though. I'll eat all the usual suspects, the meat, the pasta, the vegetables. My general rule these days is that as long as I can recognise what I'm about to eat, I'll eat it. If it's something like intestines or offal (Chinese stylie). I will try it once. Or if it's something in which I really don't want to know what I've just bitten into, don't tell me until it's the following week, assume I've eaten chicken. Not penile delights...

But that's usually the last time I try being adventurous. What are you guys like when it comes to eating funny things?

The point of me telling the world that I eat huge amounts is because in theory, people with Harlequin Ichthyosis have high metabolism because of the immensely rapid turnover of skin. This basically means I need to eat more than the regular recommended 2000 calories a day. I need to drink lots of fluids, eat protein, carbohydrates and all the blah. I constantly scratch my head when it comes to finding food enough to last the day. 

I've just attended this years' referee camp where it suddenly hit me. Ordinarily, I'm supposed to hit about 3000 calories a day...(through a chat with fellow HI buddy, Hunter). The average person only needs about 2000 calories, but because of our fantastically high metabolism, we just need to keep eating. I wouldn't know, but assuming because I'm in the sporty world, amateur in some way or form, I need to probably hit in the region of 4000-5000 since not only am I supposed to cover basic Ichthyosis nutritional needs, but I'm also covering additional energy needed to do what I do. And people wonder why I'm always eating...

Let me give you a brief rundown of what I ate today (2nd September), beware, it's by my own confession, amazingly bad!

Breakfast - a BBQ pork bun and a Red Bull on the go

Before work - a packet of crackers, water

Lunch - a rice box with sashimi fish , Lucozade bottle

Snack - ready pasta from a pack

Dinner - protein shake (High-5 4:1 Whey Protein)

By my own confession, this isn't that healthy and I do not suggest others try my diet. I've thought about this and while this is not the healthiest option, the crap in this gets eaten away and stored as my metabolism is high and my body needs the energy. 

If im out at a rugby festival or I'm ARing like last season, my ritual always includes either a beef and bacon burger or some pasta, about three hours before the game. If I'm at a minis festival, I usually eat small bits throughout the day. 

I'm working on improving my nutrition plan to include more fresh foods like:

Nuts, meat which has not been doused in sweet and sour sauce, more liquids and more fruit and vegetables. And keeping this for longer than a week might help too...!

Nutritionists of the world, please do not kill me for such a bad diet! I'm open to creative and quick on the go suggestions :)

Bye! By the way, here is the whey protein stuff I bought from Escapade, full on good stuff used by many athletes. And it's more of a yoghurty consistency but is drinkable!

The Simple Joys of the Bucket

There is the ALS, how about Ichthyosis?

By now you'll have seen social media awash with people pouring buckets of water over their heads. Great idea, it's hot, it's a good cool down, but it's also for a good reason. Lou Gehrig's disease otherwise known as ALS or Motor Neurone Disease is a degenerative condition in which patients gradually lose the ability to control their body. 

In the case of Morrie, in Mitch Albom's best selling book, Tuesdays with Morrie, Morrie is diagnosed with ALS after collapsing at a dance hall. He first loses the ability to use his feet and over an agonising period of time, his body literally shuts down and eventually and sadly, he passes away. Another example of ALS lies with British physicist Stephen Hawking who has a form of ALS. 

The idea of dousing a bucket of ice water was a way to encourage others to donate money towards finding a cure so that ALS doesn't have to have such a impact on lives. That people don't have to suffer like Morrie did. When I first saw what was being done, I was a bit wary of the fact that tons of water was being wasted, but if it's helping others find a cute, let's do it! Let's be honest, it IS a novel way of fundraising I reckon. And I did it too!

However with all things relating to research of chronic illnesses and genetic conditions, my heart skips a beat (maybe 10) because despite a small legion of efforts, I know it'll be a very long time till some wise chap finds a cure for Ichthyosis, be it Lamellar or Harlequin. I do get slightly sad when I see tons of efforts being raised for more common illnesses which is fair enough because that's important too. But sometimes I imagine people with Ichthyosis must be scrambling for ideas on fundraising towards a cure. This may also be the case for others with lesser known conditions. 

I am in no position to assume (but I will) but given the activity on Facebook, at least on mine, I have a huge number of friends unaffected by Ichthyosis but knows someone who deals with it, parent, carer or sufferer. The ALS challenge got me thinking, if this much awareness has been raised about ALS, spreading awareness like wildfire, then I'm sure us Ichthyosis people can come up with something to raise awareness not just within our legion, but the general world as well. 

Though the ice bucket challenge was fun (and cooled our bodies right down), it would be no longer be an original concept in which people want to raise money and awareness. I need to have a think and a long one but in honour of difference in appearances. I'll keep you posted on ideas...remind me soon, I'll forget!

I'm trying to work out how to attatch the video of me dunking a bucket of water over my head...I'll upload it to my Instagram page.

Do follow me at:

muixthomas

Xx

Life in The Mad Land

Hong Kong is a great place to be. Although in summer, it's a bit uncomfortable where temperatures can get to 33 degrees centigrade and 95% humidity. Don't feel sorry for me, feel sorry for the poor folks of Hong Kong who put up with my moaning! Ice cream, aloe Vera, fake Havaianas, shorts and sun screen never fail to raise a smirk!

I am so very excited because the rugby season in Honkers is about to begin and that kicks off with the annual Rugby Referees camp at the end of August. Usually held over a full day, it's the one of few days I will comply with my alarm clock as the location is usually on the other side of Hong Kong and starts at stupid'o clock. This season, I have many hopes, they include

- no injuries - Hong Kong will be pissing themselves laughing at that claim

- further advancement into Colts and Teenage rugby - can't beat a few hormones!

I have been bemoaning about my knee to every man and his dog since I did it back in January, 1st January to be precise...at a rugby tourno, how apt!  Well on the 13th of August, which was last week, I finally had the all important MRI scan which will hopefully come back with a proper slightly more accurate diagnosis of what I've done. All signs are pointing to a torn meniscus ligament. I've been having some physio at the hospital to try and strengthen up my quadriceps. But between blog and me, the strong man training done at pre-season referees training is ten times better than what I've been doing previously. I will find out the real results next week...whoop. Fingers, toes and rude bits crossed!

I don't know if I've spoken extensively about Sai Kung. Set in the eastern new territories of Hong Kong, I am surrounded by lush green, trees, beaches and best of all, great people. What is traditionally a fishing village. Sai Kung is such a lovely place to be. It's nice coming back to Sai Kung in the evenings away from the madness of HK Island, where I commute to the office each day. Sai Kung is an oasis in itself, people know each other and they look out for one another. What's great for me is the fact that because the city is full of pollution and god knows what, Sai Kung and the new territories are a breath of fresh air, literally. There is always something to do in Sai Kung and there is a reason pilots, sports people and other crazy humans make it their home. With so many bars, restaurants, walks, and more, you'd be forgiven for not wanting to move away from the place. I hope I'll be able to stay in Sai Kung for a long time. It's the antithesis of Central District, but we aren't stuffy.

 We only start hating on the tourists who clog up the single lane traffic on the weekends making it an entire ordeal to get out on the weekend...every damn week. But hey, they bring tourism and junk boat parties our way...and eat all our seafood...I kid you not, once you move to Sai Kung, you become an expert at monitoring when the taxi queue is an acceptable length to leave the bar! 

I'm starting to look for people who would like to do a guest post. I'm looking for people who want to talk about the perils of life. I'm not focussing solely on Ichthyosis, just looking for people who would like a space to see if blogging is for them! 

Looking forward to hearing from anyone, in Hong Kong or abroad! 

X

Why Blog? That is the Question

I was reading Carly Findlay's blog when something flashed upon my mind. That girl likes to blog. And she covers so many topics. She knows no limits and it's clear that if blogging paid well enough, she'd probably be one to give up the day job to focus solely on that. And what a journey that would be!

But then looking at myself, I found myself thinking to myself as I gulp a bottle of water and eat instant noodles for lunch, I end up thinking, well, why DO I blog?! Well here's why. 

I find that my ideas come alive on paper. Sometimes I struggle to verbalise my thoughts. It's as if I've suddenly become mute and only say things which would please others. I find that putting my thoughts down in writing helps me verbalise what's going on in my crazy mind and writing it down makes everything make sense. Do you understand? 

How does my writing differ from others in it’s genre?

My kind of writing differs from other in that what I write is very very personal to me and it's a bit like a journal to me. I have the ability to write what I want, more of less without boundaries. And that reflects me in a way, I like to try and live on my terms. I like to be able to write witty remarks and poke fun at things, examine my life and see the beauty of seeing my own writing being seen by others. 

What can I bring through blogging?:

The fact of the matter is, apart from having the odd appearance of a sunburnt strawberry, I'd like to think I bring humour and good vibes to people. But all things serious, I am one of few in the world with Harlequin Ichthyosis and indeed Ichthyosis and in the top generation of sufferers with Harlequin. I'd like to think I bring an optimism to others. To bring hope to those struggling with the what ifs, I hope that through my blogging, I can bring comfort to others that while having a skin disorder, life doesn't have to stop there. I want to show that you can reach for the stars and the sky is the limit. I hope to inject humour into something that let's be honest, isn't really humorous to begin with. 

My ideal readers are:

People affected by Ichthyosis, sufferers and carers,

People who are bored and fancy reading something interesting,

People who want to take life lessons from a somewhat naive 21 year old,

People who are in search of new blogs to read and follow

Blogging will make me feel:

Blogging makes me feel at ease, there's something about blogging that's strangely comforting to me. The idea that I can reach out to people and hopefully pass on a little of what my parents have been teaching me. Blogging makes me feel like I can be me, I no longer have to hide behind a facade anymore. To make me feel more at ease about having a skin disorder which will stay with me for keeps.

What am I working on?

I'm working on fresh material all the time. Whether it's about life, Hong Kong, Ichthyosis or my rugby refereeing. I constantly have ideas on the go. One day i'd like to be paid for my thoughts!!

Why do I write what I do?

Why indeed.  I feel inclined to write about myself because that's the best way to write. I couldn't possibly write about anyone else because I don't know them. I don't know how their mind works. And vice versa.  I hope that with my writing, I don't offend people with my blunt attitude towards things. I write about life in a way that I hope others will benefit in some shape or form. I write about things that others may not be comfortable writing or talking about. I understand that sometimes I write things and I come accross as a cruel and uncaring person who basically tells people to shut up and deal with the cards they've been dealt with. I don't ever mean to come across as that way. I was raised to be a caring individual by MamaRef and PapaRef and I know sometimes that doesn't shine through. But I hope in time, that obnoxious curse will be broken and things will bubble along nicely. 

I write about my life because I want to break the stigma of those who have disability and feel that society is against them. And for someone who was born in somewhat harsh and difficult circumstances, and then was picked up by Mama and PapaRef who have always egged me one and told me to persevere and give things a go, I feel like I'm in a position to say that I'm living proof that you can push through barriers and live a somewhat happy if not chaotic and fulfilling life. I mean I have to thank my parents for helping me get to where I am today. I certainly didn't do this all on my own, I mean my views may be my own, but my gung-Ho attitude and willingness to give life a go, all comes from MamaRef and PapaRef. To this I am so grateful. 

How does my writing process work?

My writing process is somewhat flimsy in that I do not have a specific writing schedule. I write when I feel like it and more often than not, most of my work is done on my commutes to work. I use my iPhone to type out my posts and sometimes I use the iPad to continue things if I get fed up of squinting at the ridiculously small keyboard being trampled over by my fat muscular fingers. I also write late at night if I can't sleep. The thing I love about blogging is that I can choose when I write and there are no deadlines. There are times when I have terrible bloggers block and won't write for a few days, but there are also times when I'm on a roll and can write a whole post in an hour. If i am able to summon up the courage, I look to people to help me do a Q&A session and I hope I can do more of those. 

I don't tend to write during work hours just because I don't have the time nor energy capacity to even spill out a sentence. That being said, my blogging is something that's a past time and something to be done in my own time. But anecdotes about work and rugby always pop up! 

I tend to draw material from my life on Facebook and Instagram. I may not always mange to churn out a long blog, but I love keeping people in the loop through my twitter, Instagram and Facebook. I depict my adventures in photos, blogs, memes and more. This being said, I have always kept those mediums relatively seperate, so that friends and followers get something's new and unique wherever they look. But this IchthyRef blog is wired through Facebook, Google and Twitter so people are always able to find their way here. 

I wrote this after reading Carly's post  and decided to take part in this little blogging exercise. I hope this has worked well! 

The IchthyRef xxx

Am I Scared?! No Duh!!!

Many people see me, they see a woman (nearly wrote girl there...!) who stands out from the crowd. And by stands out, I do not mean the likes of Cara Delevigne or Robbie Williams (though both are wicked human beings, let's be fair!) I stand out because I have a skin disorder. And believe me I wish and pray to god I didn't have it sometimes. It's scary sometimes, leaving the comforts of the family home in the mornings to make the long trip to work. I open myself up to stares, taunts and it scares me, knowing that today could be the day some unwitting person sends me on a further downward spiral, alienating myself from such an unforgiving environment that is The World, it's not only Hong Kong or Mainland China, I'm talking the World. I don't know how some days I manage to block the shit out, but some days, I'm filled with such anger and sadness that it builds up and escalates into something more. 

Like many people with Ichthyosis, our lives consist of struggling to get society to accept us, to understand that beauty is skin deep but there is so much more to our lives than just an appearance in which skin sheds, we look permanently sun burnt and as a result, we have to work extra hard to get people OUTSIDE our close circle to understand that we have dreams and aspirations too. We are not thick people just because we look different. I know this well because aside from Ichthyosis, I have a few friends in Hong Kong who face the wrath of society, just trying to get by on life while dealing with physical disabilities. If anything, society, especially where I live, society could learn a thing or two from the people they so happily shun     away since they are probably the nicest people on the planet who are just screaming for people to take them in their arms and work on that little thing called Inclusion. 

Am I scared of what the future holds for me? Both in society and in life? Yes, I'm terrified and sometimes I turn to Facebook which isn't the wisest idea at times, but it helps me try to decipher what I have or I could have. 

Occasionally I write on Facebook about people who have hurt me that day and I receive a ribbon of support from people telling me to keep me chin up and to keep fighting through because they know I am capable of doing so. I have a lovely friend who has unfortunately left for Down Under...(I like kangaroos and koalas!). But she reads my posts a few times and offers sage advice but something she pointed out made me think she truly understood. When people post negative comments, it's customary to get a barrage of support. But in essence, she said this, I hope you don't mind Kaye!

"Easy to make supportive comments, but basically it sucks and you are one of the most amazing people I know ... Don't know if I could do what you do. Lots of love & hugs ... And a few tears. Ga yauh!!! " 

It's easy for people to say things like "chin up" and "don't let people get to you" but the fact of the matter is, that it does and people often don't realise, and I am equally guilty as sin. But what people who offend don't realise, they make their comments without realising that the other person is already scarily fragile and that comment, may sometimes be the final straw and the other person just crumbles. And unfortunately, people who give love and support can't really offer anything but words because especially in my case, chances are, my lot would go up to the offending person and basically scare them shitless. Let me give you a little anecdote from a night down at the pub a while back. 

I have known people in Sai Kung, where I live since the day my parents brought me home to Sai Kung, so basically I have a massive extended family whom I love very much. But I was sitting outside with a family friend called Peter King who has known me since I was 3 and having a lively chat about work and how it's hard for expats and those who don't speak Chinese to get good solid work if you're not with the 'banker wanker' lot. But there was another bloke sitting there as well listening to the conversation. But as we were talking, he seemed to be a nice person but as soon as Peter got up to do something, he turned around to me and said, 'please don't take this the wrong way but you look really burnt and not very pretty'. His words stubbed me to the core and the anger building up inside of me was horrible, like a bubbling cauldron and I knew I had to leave before I did something I regretted. I quickly found Pete and made my excuses and explained what they guy said before leaving for home which is about a 10 minute walk away in the first village leaving the town. I texted another friend for Pete's digits as I wanted to make sure all was okay and that he didn't beat the guy up though by the look on his face when I left I couldn't be sure. When I explained why I needed his number, it all came spilling out and effectively I was so sure I'd have to deal with the ignorant soul myself, it never occurred to me to ask for help around me, as someone else quoted later, "Mui wanted to solve her own battles". It didn't occur to me that I didn't have to leave as abruptly as I did because I had an army of Liverpudlians and friends to rally around me and that's what's so good about Sai kung. Whether you have been here for a day, a month or a lifetime, we look after each other and no one, thick or clever has to fight battles on their own. 

I challenge you and every person who makes snarky remarks and damages the confidence of the people around them to take a very good look at themselves and to think , "what if I was in their shoes, how would I feel?!" Go on.

The IchthyRef Tackles Social Media

I have many praises for social media, I do.  But we all know that's a cut throat past-time where whatever you post online is for all to see. People all over the world are able to see the good, the bad and the ugly. That's just the way the internet is and unfortunately in some ways, social media makes or breaks you. The IchthyRef has tackled her fair share of social media issues and figured that maybe, sharing some tips and scenarios could help educate others. 

Instagram is something we all love, right? I mean posting photos of sexy sandy beaches and one's food is always somehow entertaining for random followers. I've been on it for about 9 months now, well since I got me a new iPhone which was about 9 months ago! I love posting pictures depicting things I do every day or things I find amusing. But with all things on social media, I've had to excercise caution just because there is always some chick who has never seen someone with Ichthyosis before and will make unkind remarks. But with so many things, you make the decision to post your life online, you deal with the outcome, you clap like a maniac when you get a like for your bowl of noodles and you wail like an idiot if someone comments about your thunder thighs being too chunky!

Do you remember those days back when one lived on MSN messenger? You'd race home, turn on the computer and start conversations? Maybe turn the USB webcam on too? Well I was no different and I loved using it. I recognised most if not all of my contacts so I knew who I was talking to. It was an unfortunate incident that I clicked 'accept' to an unknown person and in my naivety, thought I could trust everyone I chatted with. 

That incident led to effectively hate mail and believe me, sh!t truly hit the fan and it made me determined to cross check unknown contacts in the future. 

Sometimes if a person I don't know adds me on Facebook, despite the fact we may share mutual friends, I send them a quick message to double check if I really do know that person. Sometimes it just needs a little recap since I meet so many people wherever I am, it ain't easy recognising names! 

But sometimes. Even if you don't accept a request, people can still contact you and even if it isn't malicious, but it's suggestive and makes you feel like a lump of poop, don't do what I did and run to Facebook asking for help. Yes I could have done that and after all I am an adult of 21 and a half, but would that really have helped anyone? If people were sending you threats to kill yourself and commit hari kiri, then sure, the police is the way to go. But if you are being sent messages asking if you love the sender and want to be his girlfriend, either, ignore the twit, block him if needed and keep an eye on it. And if things escalate, one needs to carefully take further action. But otherwise, what good will it do?

I've just come out of teenage years and while some might speculate whether I'll ever truly grow up into an adult (I'd love to remain young, life is so carefree!) I have posted negative and bitchy comments on Facebook and Twitter. In some ways, it's a way of life, but especially for someone like the IchthyRef, when one already stands out, your comments are taken into account and your persona is built from how you act on social media. It can actually make or break job applications, university acceptances, or in general, it can make it break YOU. It doesn't matter whether you're a lovely fluffy human being in person, it's your online life that's affected as well. 

I've made lots of social media rookie mistakes and I'm not truly thrilled about my past behaviours online. Of course I've recommitted cardinal sins. But ultimately. You need to to responsible about using it. Because funnily enough, some people actually want to know good things in life. 

What's that people say?

The good things should always override the negatives?

Something along those lines...

 

The IchthyRef Does Q&A Part 2

I'm back! And here is the second part in my Q&A for Ichthyosis!

This time, my volunteers are, Melanie Luther, Courtney Westlake and Carly Findlay!

Hope what you read below is somewhat helpful :)

Melanie Luther

I first met Melanie through Facebook through the Ichthyosis Support Group, literally last year, this time…happy Facebook Anniversary, Melanie!

Melanie asks:

My daughter is very shy and when people say unkind things she just doesn't know how to handle it so just puts her head down and ignores them. But, I know this affects her deeply and she gets really upset.   If anyone has any tips for her I would be very grateful xx

Having a visual difference is difficult for anyone and unfortunately, it’s going to happen whether we like it or not. I’m a terrible person to ask about handling people when they say unkind things because I have a habit of retaliating and sometimes making things worse. People who don’t have to go through such taunts as often as us often say something along the lines of “just ignore it”, or “don’t let it get to you”, or “you’re so much stronger than them”. Now this is all great and dandy, but there does come a point when it just gets too much and your head (metaphorically) explodes in frustration and sadness. Of course, if somebody makes a cruel remark about your appearance, you’re not really going to shake it off because it still hurts. I suppose my best advice would be, to talk, if something has upset you, talk, don’t think about how your issues may upset your mum, dad, or whomever, because they are there for you in god times and in bad. And holding in emotions will just cause more hurt.

Courtney Westlake

Courtney has an adorable family and an adorable daughter with HI called Brenna (I hope wrote it right!) I first knew of Courtney when more Ichthyosis Support groups started popping up and subsequently, my parents were in touch with her and her husband Evan. Admittedly, I was still cautious of making contact as I was still uncomfortable of the idea of Ichthyosis networking. I was still relatively incognito at this stage until my cover was blown by her husband’s Aunt, Jennifer, at which point I thought it was time to crawl out from my shell and make myself known to mankind…Hi World!

Courtney has a blog as well, I think you should check that out too!

http://www.blessedbybrenna.com

Courtney Asks:

You seem really active, what special things do you do for your skin/temperature to participate in activities and sports?

I’d like to think I am relatively active and with many things, it’s taken a bit of common sense, a few facebook messages, networking and an open mind.

With regard to skin and temperature during activities, it takes a bit of common sense and knowing your own limitations. For example, when I do a day of rugby refereeing at a festival, we usually work in teams. I usually tell my team (who all already know me, but there’s always going to be someone who forgets) that I will do a few matches before stopping for a LONG water break and aircon. This happens especially in the summer months where temperatures can reach up to 34c centigrade and shade is scarce. For me, its all about pacing. The tradeoff is that while the rest of my team run out during the hottest hours, I pick up on the final few matches of the day while they head for the beer tent to spend their beer tokens, it’s a win win!

I think drinking (the non-alcoholic kind!) is key, and so is knowing your limits when to take time out. You need to remember that when you are participating in a team sport or doing activity, you are doing it, while knowing what could potentially happen. That being said though, I go out of the house with every intention of enjoying my time. And if I do come home with a fever, sun burn or just plain tired out, I just take care of it…or complain on Facebook J

Also it appears your parents have always encouraged you and not limited you at all - how old were you when you began to do some of your own skin care? Any other tips for fostering independence as our kids grow up? Thanks!

My parents are the most incredible people in the world (I’ll scream that) and I know that sometimes we butt heads (metaphorically, there’d be a lot of concussion and trips to hospital if we actually headbutted enough times!). But certainly, my parents have never stopped me from trying to do things. Just because I have HI, does not mean that life has to end there. Okay, so, we all know why the IchthyRef is called the IchthyRef. I originally wanted to play full contact rugby at 16 (should have started at 5, but my health was a bit too fragile at that point), that wasn’t going to happen after I was running the risk of brittle bones and osteoporosis. A few tears and loud moody strops later, my parents encouraged me to get down to the local (not really, it was a 45 minutes journey to the pitch!) rugby ground, DeA Tigers and see if I could help out. I should point out that I actually wanted my parents to come with me on my first meeting, but was told that if they did, there would be a lot of “talking over me” and I wouldn’t be able to demonstrate my full potential. So after checking out the club, I got in touch with the girl’s rugby coach, Tui and after a couple of weeks helping her and generally being her “biatch”, a matchday Sunday came up and I was put in contact with a member of staff, Steve Jones from HK Rugby. He had done his foot and was in a ski boot and luckily for me, I was to run errands for him most of the day! This basically jumpstarted my “no rest for the wicked” as most weekends, I would be catapulted across the whole of Hong Kong, assisting in match days before some chap (probably Steve) who mentioned that I would be a good referee and that they were recruiting. A couple of emails later and I was sitting in the Police Officers Club, attending my IRB Level 1 Match Official Course, preparing to train as a rugby ref. That’s just reminded me, I’m due to retake my accreditation this year! This is the same where Sailiability (sailing for the disabled) is concerned, it’s merely a case of checking things out and if you like it and think you and others will benefit from it, go for it!

Secondly, my parents have always had a mantra of “give it a go”. Because if it doesn’t work, well, that’s okay. That’s the same with many of the things I’ve done. I’ve been terrified, I’ve gone and done it, and I’ve survived! So yep, give things ago, there’s no harm in trying! And with the rough and tumble stuff? We just dealt with the cuts and bruises afterwards, with a bit of humour and ‘I told you so”.

As with skin care independence, I think that started at about 16? I’d have to double check that. But at that point, that was really creaming my eye lids to stop them stretching out too much. I’m still shockingly lazy when it comes to my skin care keeping on top of things, but that’s something one will only learn in the long run (or in my case, the eternity-run) but I will say since we attended the FIRST conference in Seattle in 2002, (the same year I met Hunter, Merritt, Laura and Katie), I’ve become almost anal about never leaving the house without a tub of Vaseline to lube up my eyelids. So I suppose that’s part of the skin care already sorted J

Carly Findlay

I heard about Carly a LONG time ago, I believe my dad introduced me to one of her articles or I might have picked her up on Twitter, I can’t remember, but I think we will both admit, we got off to a rocky start when one of our first encounters on Facebook involved a photo of me in my graduation ball gown. She commented on how we looked alike and how we had a similar bone structure. I quickly quaffed that idea and quite bluntly told her so and that we didn’t look remotely similar. I was resoundly informed of my interesting behavior online and wrote an apology to Carly, explaining that she was the first person to have commented on anything regarding Ichthyosis since at that point, I was living the life of an Ichthyosis sufferer in denial. I am pleased to say however, we have patched things up and I was lucky enough to be included in her Ichthyosis Awareness Month 2013. She also runs a great blog too, she does web design much better than the IchthyRef!

Check it out at,

http://carlyfindlay.blogspot.com 

Carly Asks:

My question is how do you keep resilient, especially after the house hunt ordeal? How do you laugh at it? Again feel free to use names and link back.

Truthfully, I don’t know how I do keep resilient, because I certainly don’t feel like I’m a resilient person when it comes to being metaphorically slapped in the face. Especially with the house hunt incident, I had already braced myself for a reaction of some sorts, because that’s just a way of life for me. Everywhere I go, everyone I meet, I absolutely feel the need to keep up a protective barrier for myself because the hurt and sadness can come almost instantaneously. While I’m always prepared for the “oh, you look burnt”, “were you in a fire”, etc comments, I was not prepared for when she sprouted out her attack when she said really quite openly, that she thought I was incredibly ugly and that I was too ugly to share with anyone. It is unfortunately well known in Asia that people react differently to situations. I’ve noticed that while the Western world is somewhat more discreet in their shock toward difference, the Asian world is more outward with their reactions, they will waste no time in displaying their emotions toward someone. Sometimes, you have to really laugh at the situation that you find yourself in because it’s the only way to move forward. You sometimes at to laugh at people’s ignorance and having lived in a part of the world where ignorance is not bliss, you have to learn to roll with it.

Remember, if anyone has any questions, feel free to shoot me a question, be it via Facebook on my IchthyRef page or through Twitter...or just message me! 

Thanks for reading!

xx