Ichthyosis...HELP!

Thank you Carly for writing this. I'd like to pride myself and my family for what we do in our lives. Yes, we are affected by Harlequin Ichthyosis. But our story doesn't stop there. Last year, and I'm sure I will repost anyway, I went through two of the most horrific experiences in a long time. And that was because I have HI. Raising awareness is everything. Please read Carly's piece here.

 But don't just let it stop at a skin disorder. Look at the outer box. Look at people with a visible  difference and their job success rate. I am lucky that I work in an inclusive office. But I know that not everyone is as blessed as me. I may have a skin disorder but upstairs, I'm just me. A regular human being with a penchant for rugby activities and doing completely inappropriate things at the wrong time. What people and employers should ideally understand, is that we are just as capable as the person next to us. True story.

 I work at an NGO as a teacher for people with special needs. And my mum found me that job when I was 18. 5 years later, I am now in charge of creative digital media like photography and video production. I am also a co-coordinator for International Service Development, effectively communicating with clients to promote our work. This job is hard. And I can sometimes be found in the office on a Saturday catching up. And my phone is how I answer emails from everyone work related. Not easy. But with the support of colleagues, I have made a mark. And guess what? No one realizes on the phone that I have Ichthyosis. Its only when I meet them in person and even then, I am welcomed.
 
Sharing photos and information is a vital tool in our world. But like Carly, i try to exercise caution. I am aware of what I share, will not always be met with grace and praise. I am aware that no everyone will be thrilled to see photos of feet and raw bloody skin. If you are unsure of what on earth is happening, its cool to post questions, but post the photos to people through their inbox…if they want to see. Oversharing has been a massive learning curve for me. And for me and my life, I only share what I want others to see. I have plenty of things I really don’t need the world to know or see. Its all about your own privacy.

Last year, and I’m sure FB will remind me eventually, I had a pretty horrific time with Bus Discrimination and shock videos. It was absolutely horrible to deal with and it was amazing how so many people came together to support my family through it all. BUT...and I say this with absolute caution…

People with visible differences or special needs will sadly be a target for trolls. I was surrounded by so many wonderful people who offered their love and support, both privately and publicly during that time. BUT, I know that not everyone has access to that. Organisations who advocate for us, should understand that when YOU are the targeted party, you feel utterly helpless and devastated that you’ve been reminded of your differences. YOU deserve the best support available. There is no point in simply saying that you’ve reported the incident and waiting on an action. Because it doesn’t help you emotionally, you are basically, screwed.
It makes all the difference to even receive a private inbox message, just checking in and asking how you are holding up. 

And I wish that organisations would recognise that if you are to help through some horrible experience, personalization makes all the difference.

I absolutely stand by what Carly says when she hopes that organizations that support us should look at the bigger picture. We are not simply looking at a skin disorder. Oh no. As you may have seen with our Facebook page, The Girl Behind The Face, we look at the bigger picture. We look at how our lives are affected.  Ichthyosis is not only about pouring money into research, which saddens me, because I know that it will take a while before much headway is made into a cure. Ichthyosis is life, its dealing with daily life, it’s dealing with bullying, job prospects, the whole shebang. So if we could get more life skills from the organizations, that would be amazing, it embraces everyone, better than trying to suggest things that not everyone in the world has access to.

 People have been living with Ichthyosis and visible difference for a long time. Granted, I’m not the most clued up because I’ve tended to focus what’s in front of me. But, you look around the internet and you see that adults have come before us with Ichthyosis, bringing with them a whole wealth of knowledge. Granted, if anyone asks me, go to our Facebook, it’s much more informative than I will ever be J. So anyone who reads this, utilize people who have been through it all before, it’s a lot more informative than Wikipedia will ever be.
 I have, in this day and age, been inclined to approach others in my network for advice on managing my skin condition. I trust their judgement because it is tried and tested. And I have also learnt, what works for one, may not work for someone else.

 Having grown up within the enclaves of a diverse Hong Kong (China by the way), I have been afforded so many opportunities by so many. Whilst I have a day job, I also terrify myself sometimes with the fact that I literally don’t slow down. With refereeing duties, events, sail volunteering, along with helping to raise our profile in the world, I really don’t stop. But what I have, is a result of networking, which not everyone has access to. And for organizations to provide links and networking, hopefully people will be more confident in presenting themselves out to the world.

 I have been involved in enough rugby events to know that I am in a community that accepts people, no matter what they are facing, be it a disability or something else. I have been afforded some brilliant opportunities by way of the fact that organizers and the head of referees realise that yes, I have a medical condition, but that doesn’t stop me from being involved in such a great game. My mind is completely on the ball, hence why I have been able to be involved in premiership scoring and sin bin documentation.

 As my refereeing hero Nigel Owens has said many a time,
"Rugby is without a doubt the greatest team sport on the pitch, but without a doubt, the greatest team sport off it as well".

Just because I have been afforded brilliant opportunities, it is my hope that more and more people will have just the same or even better experiences than myself. And if Ichthyosis Awareness Month can help others gain more confidence, awesome!

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! 

Do I look like I know What I'm Doing?

No, most of the time, I find myself hopping around like a headless chicken. But that's beside the point of writing this today. So it's been a while since I've decided to write, but I might as well say Happy Chinese New Year, or Kung Hei Fat choi. 

It's been a while and lots has gone on since December. I turned 23 (sh't), it was Christmas (yay), I started off the new year on a roll and so far, it's gone according to plan. Well the weather has been Baltic recently but we can deal with that. 

My post today is just a bit of a ramble if I'm honest. I'm quite excited about the state of my washing machine. Given the fact that I have never actually cleaned it before and when you have Ichthyosis, your washing machine is likely to break down a couple of times. But but but, after being told off about the state of my washing machine, I walked into the nearest hardware store and bought 2 litres of Swipe. Multipurpose cleaner which happened to also pick up about 5 years worth of well, crap quite frankly. I also bought some kind of Japanese washing machine cleaner and oh my god, I have never seen such a sparkly shiny drum after it did it's work :-). The liquids I used were a bit potent in strength, but given my plain and simple neglect in the past, it was needed to do its job. As I write this, it's currently going through a last cycle before I start loading it again tomorrow. It's days when I'm thankful for public holidays since it means I can actually do things I've been supposed to do for the past year (or 5). 

Chinese New Year in HK was certainly newsworthy. There was a riot down in Mong Kok, the land of smelly tofu, cheap markets selling fake branded items and a tourist Mecca. There were a couple of illegal hawkers doing their thing, but the popo weren't too impressed and nor were the hawkers themselves after being found out. But anyways, cutting to the chase, it pains me to see a part of Hong Kong absolutely thrashed to the point that the train system decides to skip their station stop. I live quite away from Mong Kok, but I know the area as my school was nearby. To see people chucking bins at people and bricks being thrown. I think to myself, "what the hell happened?" This isn't London, this is Hong Kong. But I hope that out of this, people realize that if you do something illegal, guess what, prepare to get into some bother, it's bound to go down badly. 

So I now flitter back to the all time entertainer, the rugby :-)

I had the opportunity to work at the Highlanders vs Racing 92 game when they were in Hong Kong recently. I was on the scores with my mate Harry, who just happens to be a better referee than myself, I'm so not jealous (hides in corner). Anyhow, the match took place in Chai Wan, some place in a place called Siu Sai Wan, or as I like to call it, the middle of buttf*cknowhere. It was an awesome game though with beautiful weather and the result of it all was that I ended up abandoning my Welsh roots for that night and posed for a photo with Dan Carter, lovely bloke by the way, but he's Kiwi :-). But I further redeemed myself after snagging a selfie with Mike Phillips during the opening match of the 6 Nations, France vs Italy. Classy times in the Sportsmans Bar of the Hong Kong Football Club. 

It's been short and sweet, but I'll be back when I have a bit more inspiration up my sleeve and the novelty of a shiny washing machine has worn off. 

Mui xxx

Hellew....

It's been a while (a long while) but I'm back!

As some, or most of you know, we have a Facebook page out called The Girl Behind the Face https://www.facebook.com/GirlBehindTheFace We are doing this for several reasons, raising awareness of cyber bullying and visible differences, but also, we are doing this to hopefully build a platform to raise even greater awareness by finding a publisher for our family book, The Girl Behind The Face. 

 

If you want to support us then please click "like" our page where you get to keep up to date with what we do, plus each Saturday, there's a new post, with an equally cool photo to match! We've got interviews there too as well as all the media exposure too. 

We've also got a website too, http://thegirlbehindtheface.weebly.com Please check it out. 

See you on Facebook!

:-)

Hunter's Guest Post...Yep, She's Done it!

This Month's blog post comes from both Hunter Steinitz and myself, hope you enjoy it!

I've known Hunter for a pretty damn long time, for as long as I could remember. She's my Harlequin Ichthyosis sister from another family. And I adore her to pieces.

Way back when, when the internet wasn't quite what it is today,  Hunter's mum, Patti and my mum would communicate via written correspondence and they would seek guidance within each other as two mums raising kids with a life threatening skin disorder. This was a few years after I was adopted nobody knew exactly how long I had left. Our Paediatric Dermatologist in Hong Kong, knew of the Foundation For Ichthyosis and Related Skin Types and told my parents of this. And after my parents got in contact with the Foundation, it was the Steinitz family who provided a light in what must have been a very dark and uncertain time.  It was Patti and Mark who provided sound advice because they knew exactly the struggles my own parents were facing,the scares, the uncertainty, the lot.

Unfortunately, Patti is no longer with us. But she continues to shine through Hunter as she continues to speak and raise awareness of having a visible difference such as Harlequin Ichthyosis.

We met for the first time in Seattle, 2002 at the FIRST Skin Conference. I was about 9, she was 7 or so. (she'll have to correct me!) I must admit that when we first met, I wasn't sure of this person who looked almost identical to me. In a way, I felt like suddenly, I was no longer the one who stuck out. But I also didn't like that suddenly, there was more than one of me!

You'll notice in this picture (found by Mark, Hunter's awesome dad) that while Hunter is trying to be as lovely as humanly possible, I retain my disgusted "expat brat" look! (despite us both having just been bought stuffed toys from the hotel giftshop!) My hope is that if I manage to kick my arse into gear, I'll be able to attend the 2016 conference in San Diego and we WILL recreate this photo, garish headband and all!

I asked Hunter to write me a post about life in general. My blog is NOT all about a life threatening skin disorder but it's also a bit of a "free space". Hunter goes on to explain about "communication" and just how vital it is to all of us.

Hunter Says:

Communication is a necessary part of any relationship. You need to feel comfortable enough with the other person that you can openly convey your thoughts without fear of being misinterpreted. Over the past several months, I realized just how important communication is to maintaining solid relationships.

A few months ago, I got into a fight with my best friend. I thought that I was communicating my thoughts clearly but in fact I was confusing her by throwing new stuff at her without giving her any chance to react or even form an opinion. I just assumed that she knew what I meant and I imagined her response rather than listened to her actual response. Then I got mad at her imagined response and stopped talking to her for a while. Those few weeks that we didn’t speak were rough. But eventually, we found a way to work through it.  But my lesson in communication doesn’t stop there.

When I came home from school, I came home to a huge ball of misunderstandings. We have a number of close family members living with us. The thing about our family is that we don’t like to make trouble. We are more likely to see something that bothers us and decide to let it go (cue Frozen music!). All joking aside though, we try to let it go but a little bit of that anger and frustration stays. Time passes we move on to the next bother.  But then we do it again, and again, and again. Notice a pattern here? We keep letting the little things go so as to not start something over what we feel to be nothing. But eventually all that festers and boils until we cannot control our anger anymore. We lash out over something that seems minute but is actually the representation of a much larger problem.

Sometimes we think we know how the people around us are going to act, what they will do, and how they respond. I think it’s important though that we don’t let what we think become what we interpret to be truth. Just because I think someone is going to act a certain way doesn’t mean that they are going to act that way. Bryant H. McGill said, “One of the most sincere forms of respect is actually listening to what another has to say.” I need to pay more attention to what people actually say and do versus what I think they will say and do.

I'm blessed to now have a wonderful relationship with Hunter and her dad and it's all down to Social Media and today's technology. 10 years ago, we would have never been able to chat in the way that we do now. I love that Hunter always understands how I feel when i start bombarding her with messages when I'm grumpy. She is quite often the voice of reason and will even remind me to "be nice" when I feel compelled to answer emails which irritate me. Having a severe lack of Ichthyosis support network in HK really sucks. This is why I value the networks and contacts that I have now. 

But it's okay, she's dealt with plenty of strange behaviour from me, she also accepts that I WILL mock Americans in the same way as she WILL probably come back from London with a crappy version of the Queen's English :)

And the numerous iMessages, FaceTimes, Skypes and Facebook messages are just gonna keep coming!

           A group photo of all of both our families together in Seattle 2002...and none of us have actually changed! Except maybe Hunter is tons prettier than me!

To Future Me

I write this after coming across a post on Facebook by Carly Findlay titled, "To my Unborn Daughter". I've decided to write a letter to my future self because well, I don't want to dwell on my possible lack of longevity, I'd prefer to look forward and pray to God that I will live as long as I allow myself to. Does that sound odd?! Heaven only knows! Imagine I'm much older, for dramatic effect! This may be a bit confuzzling, but it's my way of taking to my future self. Take heed. 

Dear Future Me,

I am your younger 22 year old self and hell, I've got the time, so I might as well jump straight in. Firstly, congratulations on reaching 35. For someone who wasn't supposed to live for long, you've certainly managed to excel yourself. You've proved doctors wrong with your stubborn attitude, you've got a good life and I hope, you're happy. I want to explain to you a few concerns and my reasonings. 

I'm consciously choosing not to have biological children, despite the advertisement of big boobs and lookalikes. I am aware that people with ichthyosis have got biological kids and I applaud them. But it's not for me. My body already works a gazillion times faster than the average person and to throw a child into the mix would be overkill. I am a relatively healthy and fit person now, but I credit that to all the activity I do. I already get tired from just an average day, imagine that with a pregnancy. Plus, do I really want to risk passing the Harlequin gene onto my child? Would that be fair for them? To have to suffer? No, I, along with my medical team have worked hard to get me where I am today and I would like to keep it that way. I won't rule out adoption though, I come from a family where adoption is kind of de riguer so I suppose it will happen and any man I choose to marry may just have to accept that biological kids are out, and adoptions are in. 

Secondly, be more open with yourself, be gracious in receiving others, be confident in yourself and know that with pitfalls, people will have your back, mostly. Go out there, you didn't survive this long to be a sad lonely tosser. Know that when bad things happen, it's okay to cry, it's okay to rant, because you're human. Know that just because you're already a strong person, doesn't mean you have to be the strong person all the time, it's okay to let your guard down sometimes. And learn to laugh naturally, don't force it.

Boys and men. Huh. It's either gonna happen or it won't. Don't push it too hard. You're going to find mr Right one day. You don't need Tinder and you don't need OKCupid. "Nuff said. 

I hope that by the time you read this, there will be more research into the Harlequin gene, though I can't imagine that happening just yet. I can however, imagine more creams, more steroids, but also less of it. Don't pump your body with unnecessary things, you'll be immune to it soon enough and that would suck. 

I hope people will become more tolerant of you and those with visible differences. It's a tough world out there. I hope the public will be more tolerant of us and won't have the audacity to throw around random bits of abuse at people they deem to be different. Remember, if people hurt you because of being you, know that it's not your fault and you should never blame yourself, it is their problem and not yours.

I hope that by the time you read this, you'll be doing what you love and if it's anything like 13 years earlier, you'll be refereeing some damn good rugby, and hopefully setting the stage overseas. Be prepared to seek guidance, be prepared to fail, be prepared to whip out the cards once in a while. Listen to your coaches, don't be complacent, you don't know it all and you need to learn as you go along. You should at least be at ARFU or World Rugby level by now but if not, get to it!

I've said a lot and I hope it resonates when you read this later on. 

Remember, eat, smile, laugh, look after yourself and enjoy life, you've made it this far, so don't bloody stop now!

Just a Typical Juno

June, ha! Where do I begin?! It's the beginning of summer, it feels like an oven AND it's also the rainy season. That's got to be good, no? But don't let me divert you as we are not here to discuss George Bernard Shaw's Pygmalion. I am not Eliza Doolittle and we are not at Ascot, hence we do not need to discuss "the weather and everybody's health"! Though it is one of my favourite musicals and Rex Harrison is divine and so are Julie Andrews and Audrey Hepburn. I read in Julie Andrews' biography and she's mentioned it tons of times, it's interesting how although it clear that Pygmalion is a love story, never does it once mention the word "love", that's British stiff upper lip for you! 

June for me has been amazing, truly. And pretty sucky as well in unequal amounts... 

The 28th May was a pretty unsettling day for me. Now I travel on public transport every day, the public bus service in HK is well, good. Good for speed, for socialisation skills, not quite. See, for those who don't have me on Facebook and don't know, I was discriminated against by a bus driver. It was a horrible thing for me and my parents to deal with and I know that for those with a visible difference, discrimination is par of the course, sadly. The driver indicated all sorts of things. You can read the full post at my dad's blog or you can read it on our Facebook page, The Girl Behind The Face. From a shitty experience, I got some positivity from it. I got so much support from so many people but my parents were the two biggest rocks of all. They jumped into action as soon as I'd stopped crying on the phone and was able to supply them with what info I had. Although I had to dash off for an injection as well, I was treated by my lovely parents to a steak and chips at our local Texan barbecue restaurant, Anthony's. So for a day which was full of grief and love in unequal amounts, that day really showed my just how much people truly care for my family and me. 

I know you're all dying to know, but the rugby refereeing season has come to it sweaty conclusion until August. Which isn't too long a break, but it's enough! A few days after my bus driver incident, I got the surprise of my life when I was awarded at the HK Rugby Referees Annual Dinner for a) turning up to training pretty much every week and b) demonstrating "overcoming life's challenges and adversities". I cannot thank the HK Rugby Referees society enough for their ongoing support. I got my first ever tankard as well :-). For me, it was an acknowledgement by others that I was making some kind of difference. I may not be at the top of the leagues just yet, but it looks like I may be able to start refereeing colts games this coming season and I'm excited! I've been doing minis for the best part of 3 years and while it's been a fantastic learning experience, I have always desired to move up the ranks. As for many a referee, their goal is to reach regional level, before reaching World Rugby denomination and subsequently refereeing the World Cup Final. And I am no different. And that acknowledgement my my fellow referees was like a massive thumbs up that I'm slowly getting better. Thanks all!  

And I won't include the fact the President of the Society had to bring my mug back to Sai Kung for me after I left it on a bar in Wan Chai...cheers Wazza!

I super excited about a test I did a few weeks ago. A DNA gene test called 23AndMe. And believe me a lot of spit was needed for that test! It'll be fascinating to know about what sorts of things I may be susceptible to or at risk for. Though it's pretty damn obvious that I do suffer from Harlequin Ichthyosis! But in all honesty, as someone who was adopted, it'll be interesting to see if my birth family had conditions that I might not be aware of. It will take a few weeks for it to be pressed, but I'll let you know what happens! Thank you to the lovely Dr Lauren Bramley for organizing this, plus looking after my health so well for the past 10+ years, I don't think I'd be as healthy now if I didn't have you, I am just so abundantly blessed to have you in my family's life!

It was also my mummy's birthday this month and my Grandmother was over to celebrate. It was a short 5 days and unfortunately I was at work most days, but I was thankful to be able to spend some time with my grandmother who I don't see very often, maybe once every few years? We had a great Saturday afternoon together spending time together in sportswear shops of all places. Well, I lost my rugby boot bag on my morning commute and ding ding ding, my boots were in there. She very generously offered to buy me a new pair of boots as well as some new trainers.. And I may have introduced her to hydration tablets too...hehe!

What else have I got lined up?

Well, I've got a busy week at work, we are two days away from putting together our annual show called We All. I'm in charge of the media crew, right up my street and on the 29th, we've got a bonding trip to Disneyland. I'm fairly sure my reactions won't be the same as they were when I went with my grandma when I was much younger, but I'm sure it'll be a fun day out!

It's been a long long post..and I need my sleep....zzzzzz

Nos Da! (That's Welsh for Good Night!)

Xx