Friday, 12 September 2014

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 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! 

Tuesday, 2 September 2014

"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!