Monday, 29 December 2014

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'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!! 

Monday, 1 December 2014

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!