Thursday, 21 August 2014

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.
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Tuesday, 19 August 2014

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 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!