Hardcore drugs, self-waterboarding and being a full time zombie.

I’m going to tell you a bit about what it feels like to live with Narcolepsy. I was diagnosed with Type 1 Narcolepsy in 1992 when I was 12 years old. I first developed my symptoms when I was 7. I have been on fairly hardcore prescription drugs for over 25 years. There is no cure. Every case is different but this is mine. 

The thing about needing to take hardcore drugs every single day of ones life in order to vaguely function is that although they make life much more bearable they don’t always work. It is a misconception that popping a pill magically makes ones symptoms disappear.

I am damn good at faking normal and I tend to try to hide my symptoms when possible because zombies made out of jelly aren’t much fun to be around. Most people only see me when I am well medicated and able to put on the facade of being fairly normal when in fact, in order to be there in the first place I have probably taken enough drugs to make a ‘normal’ person spontaneously combust. You might say that choosing to medicate my illness is a decision but if you had the opportunity to spend a week in my company with all my symptoms on display, by the end of it you would be plying me with every stimulant in the known universe and then some.

Allow me to explain.

Imagine that you have not slept for over 72 hours. Your evil brain is giving you the middle finger and allowing only the most basic functions. This makes you quite sad and grumpy. You decide to take a bath because baths are nice and relaxing but only a couple of moments in and suddenly you begin to feel very weak and before you manage to attempt to vacate the bath tub, your head and extremities go into paralysis and you turn into a human jelly. Your body is like a dead weight. It’s like you downed a whole litre of vodka but without the intoxication. This is called Cataplexy.

You eyelids are heavy, vision is blurred at best and the light hurts your eyes. Your head is heavy and although you try to keep it above the water, you can’t control your neck muscles and your head keeps bobbing up and down in to the water as you desperately try not to drown.

Now you are basically waterboarding yourself. Unable to form words with your mouth, you wouldn’t be able to scream for help even if you wanted to. Waterboarding yourself in the bath tub is not a fun time but to add to that, your brain decides to mess with you even more. Because your body is doing what it supposed to do only during stages of R.E.M sleep and your brain takes that as a cue to switch to dream mode. Only this is no normal dream.

You are essentially still fully conscious and what you are experiencing is as real as the earth is a sphere. You are absolutely sure that a very bad person has broken into the house, you hear them ascending the stairs and shuffling around outside the bathroom door. They definitely have a knife and they are definitely going to gut your naked ass like a pig.

These are auditory hallucinations but because it is dreamlike you also have some visual stuff going on as well. Giant spiders are crawling all over you and as your ears sink below the water, you can hear strange sounds. You are terrified and unable to move.

Eventually you are able to wiggle your fingers and toes so you manage to wrap your toe around the bath plug and pull it out.

You put every ounce of your being into trying to move your limbs and after a while you somehow manage to sit up but you immediately become weak again and you sway forward like a rag doll and your head splashes face down in the water. Unfortunately, you like your baths nice and deep and as you wait for the water to go down the plug hole, it occurs to you that you don’t know how long it takes to drown.

You never had the chance to take a breath and you begin to count the seconds. Bizarrely all you can think about is how horrifying it would be to be found naked, dead and bloated in the bath tub and you are determined that this will not be the case.

You survive … again.

What I just told you is a true story from my early twenties and is only one of hundreds of occasions when cataplexy became life threatening. The thing is I can’t spend my life bubble wrapped and I won’t always be safe when this happens. This is just the reality of it. It’s just the way it is.

Now remember that 72 hours sleep deprivation I told you about? Imagine that you feel like that every single day for your entire life. You are given a load of drugs to help combat all of the above but the drugs don’t always work.

Most of the time life is bearable and your symptoms are controlled fairly well although they are always very much still there. They don’t go away completely.

Severe tiredness is a daily thing and occasionally, particularly when you attempt ‘normal’ your brain cruelly reminds you that normal is not going to happen for you and you are struck down with sudden and extreme episodes of tiredness or cataplexy.

Even though you are always tired, you still don’t manage to sleep well at night.
You tend to wake up several times throughout the night and when you do go to sleep, within a few minutes you are having epic lucid dreams so you wake up exhausted anyway. Your brain is often foggy and you forget things constantly, struggle to be as organised as you would like and you have a reputation for being slightly late.

You often feel helpless and alone and with all of this comes depression. All you can do is pop some more pills and hope for the best. You try to remain strong and positive but find yourself facing obstacle after obstacle and people seem to think that you should be rich and successful, as if you hadn’t been slightly preoccupied merely attempting to get through each day.

I began writing this yesterday.

Just this morning I had 3 cataplectic attacks. During one of them I was attempting to boil some eggs and nearly ended up burning them. Luckily I came out of the attack in time to turn off the stove.

Today I feel very weak and I will almost definitely have more cataplexy throughout the day. I probably shouldn’t attempt to go out in case I collapse in the road and I am not exactly fantastic company in this state.

I can’t drive a car, kids are definitely off the cards for me, although some narcoleptics do both of those things. It depends on the severity.

I spent the first 15 years of my life with Narcolepsy being utterly ashamed of who I am and feeling like I shouldn’t be here.  I sometimes feel like a burden to others. I have to constantly tell myself that I am worthy of life. But yes, I make it look easy so that you won’t be confronted by all the dark stuff, so that I don’t have to explain what to do when I have cataplexy and so that I am not a problem for other people.

Anyway, that’s my case of Narcolepsy in a nutshell. Only a nutshell though.

So next time you meet a Narcoleptic, don’t ask them why attempting normal is a little bit tricky for them because now you know the answer.

 

Bloody Demons

This gallery contains 1 photo.

Over the past two days the walls of my little world sort of came crumbling in on me (yet again). I can’t give any details as to why (please do not ask … and those who know, please refrain from telling). For a while there I genuinely believed that there was no way of fixing […]

Why people need to refrain from giving ‘friendly advice’ to people with chronic illness.

This is a bit of a rant, not intended to offend anyone and as usual it does contain a few expletives here and there. 

“Drugs are bad… Mmm kay!”
“Right okay Thanks, great. That helps, loads.”  Sarcastic face

For the purpose of this post, when I use the term drugs, I am referring to the prescribed medicinal type. Recreational and illegal drug usage is an entire other conversation.

We all know that overall, taking bin loads of chemicals is really bad for you. Resorting to pills straight away for anything is generally best avoided for a variety of reasons, most of them fairly well documented so I don’t need to go into that.

For those of you who don’t know me very well, I take bin loads of drugs. I have been on most of these since I was 12 with a couple of additions in my 20’s.

Why do I take these evil chemicals? I was diagnosed with Narcolepsy with Cataplexy in 1992, after developing it 5 years before at the age of 7.

Narcolepsy is an autoimmune disease in which the immune system accidentally kills off the hypocretin-producing neurons. This results in the entire sleep wake regulating system being shot to shit. It also relates to metabolism. It is indeed monumentally lame.

“Genetic factors may also play a role. Most people with narcolepsy have inherited a gene that codes for the human leukocyte antigen (HLA) DQB1*06:02, which is important for immune function. This gene is found in 12–25% of the general population, and it increases the risk of developing narcolepsy 7- to 25-fold.³ Additional genes can increase or decrease the risk of developing narcolepsy, and, like HLA-DQB1*06:02, most of these affect the functions of the immune system.” – http://healthysleep.med.harvard.edu

It is thought that Narcolepsy may also be triggered by virus or external environmental factors.

Nobody really knows what triggered my illness at such a young age and with such severity but it is possible that I would have developed it later in life. The only major environmental incident that happened exactly one year before my symptoms began to affect me, was the Chernobyl disaster in 1986. Although I live nowhere near Russia, it was documented that the radiation cloud did come over my home town which is the highest point in Nottinghamshire, level with a mountain range in Russia. It is well known that many farm animals in Britain had to be culled because of this. Perhaps if they had known, they could have taken me out to a pasture and had me shot. It would have saved the NHS* a hell of a lot of money.

I have all of the 5 common symptoms, Excessive Daytime Sleepiness (EDS*), Cataplexy, Automatic Behaviour, Sleep Paralysis and Hypnogogic/Hypnopompic Hallucinations. I do not have Sleep Apnea. 

Narcolepsy Symptoms

There are five common symptoms of narcolepsy. Apparently, few people have all of them. Lucky me, I have all of them.

As I write this and for the last few hours (I wrote this about a month ago) I have been experiencing one of the more debilitating symptoms, Cataplexy.  I can describe it as a sort of dizziness and my body occasionally turning into jelly, like I am about to collapse, which is what might happen, but I have recently re-medicated so it’s not too bad right now. (It got much worse) Anyway, because of this, I decided to save time and energy (what little I have and even though I know this stuff off by heart) to cheat by copying and pasting the symptoms from another website. (can’t remember which one, oops! … it’s generally always the same though.)

Throughout the text, My own witty input is highlighted in red.
FYI, I am referring to my own knowledge and experience with these symptoms. I can’t speak for everyone. 

The first and most important symptom (this is a matter of opinion, I wouldn’t say it is the most important, it is certainly the most common and so the first if they are to be given some sort of listing order. It is not the most horrific, in my view, but the most fricking irritating and massively inconvenient on a daily basis) is sudden daytime sleepiness more commonly known as Excessive Daytime Sleepiness or EDS* so extreme that it becomes impossible to stay awake for more than a few moments no matter how hard the person tries, even if they’re standing up. This is most likely to occur when the person is passive or bored – for example, in the classroom or at work. In a few cases, however, it occurs during physical exertion or stress.  I fall asleep when walking, sitting, standing, you name it, there is nowhere I have been and nothing I have done in life where I haven’t fallen asleep at least once. 

It’s not difficult to rouse someone from such a state, and upon waking people may feel refreshed, but the tiredness may return very soon, forcing another bout of sleep. This may happen several times a day in the most severe cases. If someone with narcolepsy is left undisturbed, the sleep may last from a few minutes to a few hours. It is very hard to really describe this because it isn’t black and white. No symptom of any illness is black and white. For me personally, I am tired pretty much all of the time but I only really notice how bad this symptom is when I try do ‘normal activities’ like taking classes, sitting on public transport or trying to hold down any sort of ‘normal’ job. I am a Belly dance teacher and performer but don’t think for a moment that it doesn’t affect me when I dance. It does. I am just quite good at winging it when I need to for short amounts of time. As for how long, I tend to dose of for 15 mins a time but it can repeat over and over. On a very bad day, I can experience Micro-sleeps for a few seconds at a time, hundreds of times throughout the day. 

Despite this, people with narcolepsy do not actually tend to sleep more hours in a day than people without the condition. This naturally implies that people with this condition get less sleep at night, and indeed many complain of unrefreshing nighttime sleep that’s often interrupted by nightmares. or sleep paralysis or just not being able to stay asleep for long periods of time. and then there is an entire other conversation about lucid dreaming and all sorts of stuff. Actually the main issue here is to do with a lack of non-REM sleep. 

As well as briefly falling asleep several times during the day, people with narcolepsy are prone to waking up several times a night. (Yes, we suck at sleeping at night)

The other three symptoms of narcolepsy (cataplexy, sleep paralysis, and Hypnagogic phenomena) are rarer, they sure aren’t fricking rare for me. but most sufferers experience at least one of them from time to time.
and many people who don’t have narcolepsy or anything of the sort also experience Sleep paralysis from time to time but nothing on the scale of how it manifests in Narcolepsy. They all occur in fully conscious people and can be frightening if the person hasn’t yet been diagnosed and doesn’t know he or she has narcolepsy.  fully conscious? sort of  … urgh far too complicated to go into all of that.

In cataplexy, the low muscle tone of REM sleep appears suddenly in a person who is fully awake at a time of strong emotion. Laughter, anger, fear, happiness, or, most often, a simple surprise can cause a person to go suddenly limp and drop to the ground. and some people like me have an even rarer type of cataplexy which is apparently called, Status cataplecticus, which sounds awesome but totally sucks balls. It means I have super mega epic Cataplexy. It does not require strong emotion and is even worse when it happens in the bath or when swimming. I have basically waterboarded myself so many times, you don’t even want to know. “So stay out of the water!”  I hear you cry. Hell no! Piss off! I have given up quite enough things for this sodding illness thank you. I will take my chances and live dangerously. 

Sleep paralysis occurs just before going to sleep or just after waking up. A temporary but complete paralysis prevents the person from moving for a few seconds. Sleep paralysis isn’t actually that rare, especially in children, but it’s only a sign of narcolepsy if one also experiences the primary symptom of suddenly falling asleep in the daytime. Sleep paralysis makes Freddy Kruger look like Pikachu!

Hypnagogic phenomena (hallucinations) also occur just before drifting off to sleep. Hypnopompic phenomena are hallucinations that occur just after waking but are even rarer. Basically, they are vivid dreams that project into the waking period. Because they occur in people who aren’t actually asleep, these dreams are sometimes called hallucinations. This one is the worst of the worst. Often comes with sleep paralysis and sometimes follows an episode of cataplexy if the ol’ brain decides it’s ‘dream time’. This shit makes Dante’s inferno look like a theme park. and along with cataplexy is also even more horrifying when it happens in the bath. 

There is one potential complication of narcolepsy, which is also a risk in other sleep disorders, and that’s having an accident due to fatigue. The urge to sleep is so sudden and irresistible that it’s more like passing out than going to sleep. It’s been known to happen while operating a motor vehicle or heavy machinery. Similarly, people who don’t sleep well at night may be below par in the daytime, whether they feel an urge to sleep or not. Even minor fatigue can impair judgment, making vehicles and heavy machinery dangerous. Controlling the symptoms of narcolepsy can go a long way towards preventing accidents. In all these years, I have never (touch wood) had a major accident. Basically, I am frickin’ awesome at doing stuff in my sleep. I have had many near misses and a few kitchen incidents resulting in burns and I definitely should have been hit by more vehicles than I actually have. 

MY OWN SYMPTOMS

The severity of each symptom has fluctuated and changed over the years. Overall, my condition has not necessarily improved, perhaps though, I have grown better at coping with it. When socialising, it may not look like anything is wrong with me, unless you really pay attention, then you will see my tiredness levels fluctuating constantly and you might notice me popping pills. If I am socialising or doing anything in public, you can bet I am very well medicated.

EDS affects me, not just on a daily basis, but every moment of every day. Cataplexy used to happen all the time but much less now, thanks to the Venlafaxine. When it does happen though, it is extremely severe. The side effects of Venlafaxine, of course, are nothing to smile about. 

I have been on various medications since my diagnosis. (around 25 years ago, Aaaargh! God that makes me sounds so old!)

Currently, my daily medications include the following:

For daytime sleepiness:
•  2x10mg Methylphenidate, 3 times a day or more depending on what I am doing
(I have been on this particular drug since 1992 and when I did attempt to have a ‘normal day job’ I was on up to 15 a day!)
• 2x100mg of Provigil (Modafinil)  twice a day

To help prevent Cataplexy:
• 1x Venlafaxine 1 x 75mg daily

So where am I going with this?

Well, I am not in need of your sympathies, but thank you. Some understanding though, goes a very long way.

Over the years I have had people say various things to me, offering bits of advice about remedies they think I should try, or ways they think I should try to feel less tired and sometimes people say things like “You really shouldn’t take those drugs” and “There are loads of natural things that you could take to treat your illness”

Now, I am all down with using what nature has to offer to aid an ailment. However, unless you happen to know which combination of them is going to help me, not to mention how I am meant to pay for them, please refrain from giving me this advice.

Do you really think I prefer being on shed loads of hardcore drugs? Hell no! and while some narcoleptics are lucky enough to manage without medications, many of us have such severe symptoms, which are so debilitating, we can’t function at all without. It’s not just about being a bit tired every day.

Imagine waking up in the morning, as soon as you see daylight your eyes don’t work properly, your body feels weak and you suddenly become unable to move or speak for 15 mins, other grim symptoms follow, as mentioned above, then shortly after regaining use of your muscles, it happens all over again … and again … and again. You can’t make it a few feet from your bed without collapsing into a heap. You can’t go down the stairs without collapsing, you can’t even sit up in bed for long and as well as the paralysis, staying awake for long is impossible. This is me at my very very worst. Thankfully, I am not like this as often now … because of my meds.

Recently, I ran out of one of my medications and within two days, this was the state I was in. This has happened many times and It is unbearable.

I am well aware that coming off those meds will no doubt result in worsened symptoms initially, but I just can’t face being like that for more than a few days. Some people suggested that if I came off the meds that my symptoms might have improved and perhaps I should try it. The thing is, Narcolepsy doesn’t generally improve over time, once those hypocretin-producing neurons have been destroyed, they don’t magically reappear. One may learn to cope with the symptoms or find ways of avoiding them which involves things like blocking out emotions to avoid cataplexy, but for me, that doesn’t work. My cataplexy isn’t only triggered by emotions, it is worsened by them. A PWN*** also might go to great lengths to hide the visibility of the symptoms as well.

So, I wish to conclude by saying that although your hearts might be in the right place and you mean well, when you form opinions about someone else’s illness and how they are being treated, unless you have that same illness, you can’t possibly know what that person has to cope with and unless you have thoroughly researched the subject and come up with some good suggestions that are based on genuine science, please avoid offering advice and never tell someone that they should or shouldn’t be doing something, such as taking medications. Even if you do have the same or similar illness and have found something that works for you, it does not mean you have the answer for everyone. By all means, share your experiences but please don’t think you have some sort of cure for all. If you did, you would probably already be a billionaire.

Don’t get me wrong though, I am always interested to chat about new ideas and willing to try things in combination with my meds, but until I figure out what works best, there is no way I am going to give up my current stability which includes my ability to teach and dance, just to try something that might not even work … and no, my meds are not perfect either. They are in no way a cure and don’t alleviate all my symptoms 100% but I have much more of a life than I had without them.

So, be supportive, or not, up to you. But please keep your ‘advice’ to yourself. Telling me that I have been doing everything wrong for the past 25 years is really not helpful at all and only ends up making me feel shitty about something that has already made my life pretty shitty. I do the best I can and the fact that I am still here at all is something I value and had to fight for. Being eternally tired and basically written off by ‘normal society’ doesn’t make one’s life feel very valuable. Believe me, whatever I am doing and however I am doing it, I had to fight to even get to that point. I am not brave either, I just don’t go down without a fight.

If however, you would like to see what a truly evil stare really look like, go ahead and give me your wonderful advice about how I can be cured if only I do blah blah blah 😉

Rant over. Sleep well chucks 😉

If you are on Pinterest check out my Narcolepsy pins.
https://www.pinterest.com/bduktv/narcolepsy-and-stufzzzzzzzzzzz/

* NHS is the ‘current’ National Health Service in UK 
* EDS refers to Excessive Daytime Sleepiness
*** PWN is a Person with Narcolepsy

Why we should give a crap about mass surveillance.

WARNING. CONTAINS NSFW LANGUAGE. USE OF EXPLETIVES.
If you are offended by swearing, this is perhaps not the blog for you.

• BLOG POST: 10 min read/listen
• NEWS ARTICLE: 7 min read
• SNOWDEN YOUTUBE CLIP: 12 mins
If you choose only one of these, make it the YouTube video!

IF YOU CAN’T BE ARSED TO READ THIS EPIC POST, I HAVE TAKEN THE TIME TO CREATE A SUPER AWESOME AUDIO CLIP. SO YOU CAN RELAX WITH A CUP OF TEA AND LISTEN. READ BY MY COMPUTER, HAL. ENJOY!
>>>> LISTEN HERE <<<<

Yesterday I posted on Facebook about the recent surveillance bill passed in the UK. (the irony of posting it on a ‘watched’ website was not lost on me) Some of my friends commented and mentioned that they felt they weren’t necessarily concerned about this because it is nothing new or that they have nothing to hide or that perhaps surveillance is necessary to prevent crime.

Here is the original FB post

Firstly, let’s consider what surveillance actually is. What it really means for an individual and for a society. For this, I will create a ridiculous scenario, mainly to highlight its ridiculousness, both on a government level and relating to marketing.
Because let us not forget, as well as government tracking, private firms are selling those same spying tools and mass surveillance technologies to companies all over the world, so that they can target people with their products and services.

Think of it like this. Imagine leaving your front door open, never closing your curtains and allowing everyone to watch what you are doing 24 7. But they don’t just watch, they film you and photograph everything you are doing and record all of your conversations and then store them in a place where other people can access all of it.

You then allow your postman to make personal copies of every single piece of mail that ever goes to your house and then he shares it with hundreds of other people. You’re postman probably follows you around all day as well. As does the milkman — and for some reason, he keeps trying to sell you other shit besides milk.

As well as having your house open for all to see, every time you leave your house to go to work or meet a friend or walk the dog, someone records it and adds this seemingly mundane information to a personal database of ‘you’.

You go shopping and some dude tails you around the supermarket, taking note of everything you bought and then they pass that information on to Joe Whatshisface who then shares it with his friends, all of who own various businesses and services and every day, they send people to your house to post flyers about things that they think you would like to buy, and because some of his friends are total assholes, they send their minions to stand outside with huge signs and banners, some of them have pictures of partially nude people on, suggesting that you might want to meet someone for some ‘sexy-time’.

Every single time you leave your house they are there. It’s quite embarrassing for you but you notice that Bob, your next door neighbour, is getting it much worse because he ‘accidentally’ engaged with one of the people with the ‘titty banners’ and now there is a huge mob of them, clambering all over his house and property. The police are also watching him because of this — he hasn’t actually done anything wrong.

It isn’t just you and Bob having all this shit go on, it’s every single person living on the street. Everyone’s child, mother and uncle Frank, their grannies and their fucking cats. What the fuck, are they doing spying on 82-year-old granny? She retired 20 years ago and before that she worked in the local library and went to Bingo on a Sunday. But they are still collecting data on her, all her shopping, every time she pops out to the chemist to buy frickin’ incontinence pads, and that smartphone you bought her, so she could contact you in an emergency, keeps bombarding her with crap she doesn’t even understand, and hundreds of people are trying to get her to buy shit she doesn’t need. — No! granny doesn’t want a hot date with a local milf!

But that’s only the commercial element of spying. Over at the ‘Ministry of bullshit’, someone has decided, Mr.Ahmed, a man who lives round the corner from you, who happens to be quite a successful lawyer, is standing in the way of what would be a lucrative business operation. This is a business that some top government officials happen to have shares in. So what do they do?

Well, Dave Blogs who works in surveillance has access to highly detailed information about every single person living in the country. All he has to do is do a simple search using the spy software, and find something in Mr. Ahmed’s life, something seemingly mundane, then they find other things, anything, maybe his daughter was caught smoking pot one time, maybe his son has been visiting family in places where there are known terrorist cells.

With a few simple additions, some damning notes on his profile, some manipulation, maybe even blackmail — suddenly Mr. Ahmed has been directly linked to terrorism. In fact, Mr. Ahmed was a simple, honest hardworking man who worked as a human rights lawyer, and he is suddenly arrested under suspicion of terrorism, just because he was in the way of a corporation. This is a minor example of how this surveillance, can be and is  being used against the public.

So, what if someone in your family, down the line, is in a similar situation, what happens if you become the dubious link or even the target? If you think that governments don’t do this, you have been misinformed.

And whether this is a new thing or not, does not make it any less important. Rape and murder have been around since the dawn of man but it doesn’t mean it is something we shouldn’t acknowledge as a problem. We have known about the existence of such programs for a long time. It is only now that it is legal for governments to use them on mass in this way and not just to target known criminals.

If you need a court order to enter my house and search through my things, why do you not need one to intrude on other areas of my life and go through my digital footprint as if it is a box of donations that I left on your doorstep?

MORE CORRUPT THAN A WEASEL IN A PET SHOP.

Governments are not parent-like organisations that protect us from bad things. Although not every single politician is a conniving bastard, they don’t have a grand track record for acts of human kindness. The reality is—THEY ‘ARE’ THE BAD THINGS! Just go ahead and look up some synonyms for the word government.

They are there to control and to profit, I don’t need to tell you (but heck, I will anyway) countless government officials are known to be linked to corrupt corporations and huge oil companies that are tearing our planet apart. The military complex is arming poor countries and them bombing the shit out of them.

It is well-known that the British Royal family has been doing business with Saudi’s for decades. A country responsible for the most heinous acts against human rights, a country where chopping off someone’s head in the street is very much still a thing — and the British royal family hang-out with them all chummy.

Are you really ok with morally redundant narcissists and megalomaniacs, having the power to spy and collect information every single step you make every day?

MASS SURVEILLANCE IS A HUMAN RIGHTS VIOLATION

You need to understand, THIS IS NOT JUST ABOUT YOU! This is about the people who’s rights are going to be attacked, journalists and human rights activists; individuals who don’t tick the preferred boxes for political views, race, religion or sexuality.

If Britain, until recently one of the most democratic nations on earth, can become a right-wing surveillance state, what do you think this is going to do for countries who already commit crimes against humanity who use this sort of surveillance technology as a weapon, where people will be tortured — because we didn’t think it was that much of a big deal?

Edward Snowden did not give up his cushy job in Hawaii, his nice apartment with his hot girlfriend, his family, his friends, his citizenship — and flee to live in Exile in Moscow, with the threat that if he ever went back home he would most likely face the death penalty — so that we could just go and dismiss this and say “it doesn’t affect me, I’m not a target, I have nothing to hide”

He is not the only ‘whistleblower’. Some of them were not so lucky and have faced jail and torture, simply because they wanted the public to know the truth.

FYI. The programs revealed by Snowden, have NEVER prevented a terrorist attack.]

“It is statistically impossible for total population surveillance to be an effective tool for catching terrorists. Even if your magic terrorist-catching machine has a false positive rate of 1 in 1000 – and no security technology comes anywhere near this – every time you asked it for suspects in the UK it would flag 60,000 innocent people” – newscientist.com

NEWS ARTICLE (The Intercept) : U.S.SURVEILLANCE, NO RECORD OF STOPPING TERROR ATTACKS (7 min read)

Let’s be clear, this surveillance is not about protection, it is about control. The government and the 1% wealth that funds their corporations are ever more paranoid about the people becoming educated, and rising up against them — and they are right to be. We are pissed. We know the truth. We know they aren’t there to protect our rights, they are simply protecting their own wealthy lifestyles while the rest of us remain either ignorant or helpless, especially the poorest. This conversation is not isolated to the USA or Great Britain. This is a world issue, a human issue, so we must fight for our rights because they are being taken away from us and some of us are simply choosing to look away or accept it as the status quo

Lastly, I want my friends to know, because I have these views, just like anyone else that has similar views  and because I have searched these terms on the internet, shared my views publicly and believe in the protection of human rights and freedom of speech, I have essentially put myself out there as a target. I know very well that because of my political views, my interests in activism, and even the fact that I work with victims of human trafficking, I am one of the people who could easily be targeted as a result of this mass surveillance. I also currently live in a country where people can be arrested simply for sharing their anti-government views in public or on social media or for protesting. They have also made it impossible for investigations to take place in cases of death within police custody when it is related to political dissent. I want my close friends to consider that before writing off this issue. I often joke on facebook by writing “Hello NSA” in my private messages” — Yes, I have a slightly dark sense of humour. But it’s not really a joke for people living under oppressive regimes and Britain is not what it used to be. Just as the new government was elected, they began talking about scrapping the human rights act —and now this. Little by little, they are changing the political climate, slowly taking away the rights of the people. If you are not concerned about that, you may need to open your eyes.

If after all that, you are still not entirely convinced and you don’t have the time to read any of the linked articles, I implore you to at least watch this video from start to finish.

Thanks for reading this fucking epic post 😉

YOUTUBE VIDEO  NSA whistleblower Edward Snowden:
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Balkan Escapades (via Deutschland)

PART 1 : DEUTSCHLAND

From Wednesday 24th August 2016

Crapton’s log: Splardate 001

Travelled 12,551KM from Kuala Lumpur to Amsterdam with a 10 hour layover in Dubai where I rented a Snoozecube for 6 hours then from Amsterdam to Utrecht where I sat and watched my 5pm train as it left the station and. Sat for 2 hours hoping there would be another. Finally made it to Essen at around 9:30pm. Met fellow Tribal dancer Nina and her partner Heike, who are kindly hosting Nanci (YogaBitch) and myself at their home.

Ate some awesome carrot and squash soup then set up camp in the back yard. Nanci likes to sleep under the stars and I am just enjoying the fact that I can go outside at nighttime and not melt from the heat within 30 seconds.

I awoke this morning and slowly crawled from my cocoon and drank several cups of Pu’er tea. During the night, My airways had almost completely closed shut Due to grass allergies. Luckily death did not occur.

I am still part slug, sat in my sleeping bag. My partner in crime, Nanci is doing Mycrodoga (yoga with Mycro the dog) Since my brain is still rebooting and my meds have yet to take effect so I am watching from a healthy distance.

2pm. Cat has bolted. Cat is not meant to be outside but the door wasn’t shut properly so he managed to escape. Clambered through the undergrowth after him to try to retrieve, to no avail. Had to leave Nanci to deal with it as I am off to visit my auntie, uncle and cousins in Bad Lipspringe.

3:17pm
After an unsuccessful attempt to catch a bus, I went back to the house and downloaded an online taxi app. Finally made it to the train station. Hope I am on the right train. Wifi is not easy to get hold of here. Pokemon Go isn’t happening either.

Made it to my relatives house for 6pm, had some yummy soup and stayed the night. Uncle Wolfgang drove me to the train station very early next morning.

Crapton’s Log: Splardate 002

I arrived back in Essen to find Nanci already awake, doing some chanting and practicing Pranayama (Yogic breathing exercises)

Instead of joining her I went outside and gave my lungs their daily beating with some Indonesian cigarettes.

While Nanci and Nina went to an event I opted to stay home, do some coursework and sleep.

Later that evening we attended an ATS® Workshop with teacher Nicole Shiroshakar whom it turns out is a fantastic teacher. One of the things I really like love most about attending other teachers ATS classes is seeing how they teach. I always learn something new or think of something that I wouldn’t have thought of before.

Exhausted and talking absolute nonsense because of our blood sugar levels, we headed for the nearest food outlet, ordered portions of potato gratin with broccoli, slathered in cheese.

We were soon exhausted and hit the hay but Nanci and I lay awake and continued to talk a lot of random nonsense and laughing hysterically until our stomachs ached, over the most ridiculous things.

I failed to write anymore from this part of the journey but what I can tell you is that it did involve me drinking an entire Rockabilly Car and Bike Festival under the table. True story!

PART 2 – BATS, CATS, WINE, MOUNTAINS, WRESTLING and DINOSAUR in BULGARIA 

After spending one week in Germany with friends and visiting family, my partner in mountain crime, Nanci Traynor, Mycro the dog and I  headed for the Balkans. Upon entering Bulgaria, we rescued a tiny Bat, he was just on the floor of the walkway between the aeroplane and the airport. We alerted the airline staff, for a moment they probably thought we had bought the little guy in with us which would have been very bad for all concerned. After releasing Mr Bat into the great outdoors, we made our way into Sofia. We wer hosted by some awesome crazy Balkan dudes who were kind enough to let us take over their lounge for a few days before we packed our shit and headed up the Stara Planina in the Balkan mountains for a seven day hike. A train from Sofia then beginning in Gara Lakatnik, on to the Trastena hut following the E3 route, ending at the Leskova hut.

We survived to tell the tale. 

Ready for our adventure

At the train station with Mycro the dog

Day I – The Ascent

With our heavy backpacks on, groaning and huffing and trudging upwards for what felt like forever, we eventually made it to the village of lakatnik where we stopped briefly and had a beer at the local grocery shop.

Then continued onwards towards a hut known as trastena. This area is famous for raspberry wine and we were on a mission to find some. Each time we passed another human being Nanci would ask about the raspberry wine and they would all point in the same direction which was up the mountain.

We met an old sheep herder who warned us about seven karackachan (huge mountain dogs) so we took the route around to avoid them. As it was nearing sunset we decided to stop and find a spot to set up camp.

Dinner was cheese and tomato on what we named Lambas bread for This bread was awesome and would last us a good 3 or 4 days. Then on with the wools and to bed.

Day II – A Random Hut

As usual I didn’t sleep too well but Nanci is an early bird so I caught up on a bit when she went off walking in the morning.

Oats for breakfast but the sodding camping stove was buggered. The pipe had a leak. Brand new as well. Arse! Managed to make the oats though then Nanci lost her mind briefly and said she didn’t want to continue without a stove but she soon came to her senses and we packed up, said hello to the old shepherd from the previous day who was up there fetching his sheep with 3 large mountain dogs, Mycro fled and hid in the woods until the sheep and dogs had gone.

We hadn’t walked far when we spotted another sign for Trastena and a few hundred yards after that we spotted some buildings down the hill so we went to have a look.

We found 3 empty huts, 2 of them locked and there was also a small modern church.

The Church near the random mountain hut.

View through the church doors.

window

There was fresh running water, apple trees and yummy grapes so we decided to stay. Not inside the hut though, just on the large porch area in our sleeping bags. I bagsied one of the sofas. We soon figured it wasn’t actually Trastena though after reading a description of Trastena and realising it didn’t quite fit.

 

Crap at fishing

There were 4 large concrete fish ponds down the bottom of the garden. We went down to have a closer look and Mycro followed us then lost his footing and plopped into the water which didn’t amuse him nearly as much as it did us. He went off sulking back up to the house, cold and wet and covered in green pond gunk.

Later I attempted and failed to catch some rainbow trout. The buggers were far too fast and sneaky for me and my efforts were not helped by the completely unsuitable net which was more likely for clearing the ponds of leaves and crap.

I fell asleep whilst squatting at the edge of the fish pond for a while as well. That’s perfectly normal for me though, I mean falling asleep in random situation so, not the fishing.

We slept during the afternoon then Nanci made a fire in one of the outdoor stoves and cooked up some beans and spices for tea then we hit the hay around 9pm, just after dark.

Nanci is the twisted firestarter

Onward and upward and occasionally backward.

Day III – Raspberry wine & Kittens

I slept in late and Nanci cooked up some yummy nosh for breakfast. I had two some awesome lucid dreams featuring horses. One was about a girl in a small village in medieval times who fell for a guy as they were both about to leave town for some reason but she went after him on a horse, I can remember the details but it wouldn’t sound all that interesting if I wrote it down. In the second, I was a professional con man who rode from town to town pretending to be important and conning the kings and queens of various places and obtaining jewels and horses. Again I can remember much more detail but writing it down wouldn’t do it justice and besides it would sway too much from the point which is simply to document our hike.

I had read on someones hiking blog that the walk was an hour and a half from Lakatnik, it was more like 4 hours even if we hadn’t stopped twice.

We continued to follow the old Roman road. The scenery was epic looking back down over the mountain we had climbed. We saw lots of lizards, hundreds of butterflies and a baby snake.

Finally made it to Trastena!

Although there were now regular signs to Trastena, we had begun to imagine that it was a made up place and the signs were just there to mess with us. Then we came to clearing and behind some trees we stood a large white building with some canvas tents and some vehicles parked outside.

We had finally made it to civilisation or shall we say one man and his kittens. The house apparently sleeps 30 but we would be camping out anyway.

 

Bulgarian pops welcomed us and with Nanci’s limited Bulgarian language skills (she is working on that) we were able to obtain a lovely bottle of the famous raspberry and grape, Trastena vino.

Unfortunately they had run out of the pure raspberry one which we were only temporarily disappointed about. Holy shitballs, this stuff is amazing!

Later after a brief phone conversation with pops, English speaking son, we explained that we would be camping maybe a night or two and that we were very interested in obtaining more wine.

Just to clarify, Trastena is actually not the correct translation as I discovered when trying to tag the place on ‘facemuck’.

xижа Тръстеная translates as Trustenaja Hut. I’m not sure why it ended up being called Trastena wine. Maybe they figured the “Ja” would be too much for our foreign brains.

 

Wine and cats = I am in heaven!

 

 

 

Adorables!

 

 

 

 

 

 

 

Whilst sat on the porch outside the house, we were accosted by three motherless kittens. I happily allowed them to climb all over me for the remainder of our stay.

 

Our crap drawing

We put up the tent, had a snooze then Nanci, drew a rubbish picture of a chicken and some eggs and cheese I added a crap attempt at some tomatoes and we handed it to Bulgarian pops who laughed and went to pick some fresh giant tomatoes and some bits from the awesome vegetable garden and proceeded to fix  us up with a spectacular omelette and salad.

 

I made the mistake of visiting the old outdoor toilet which was not unlike other experiences I have had in India and at various music festivals. Had I known there was an available toilet to use in the house I may have avoided seeing the inside of the old brick building with the grim hole in the ground and the filth that accompanied it. You will be pleased to know that there is no photographic evidence of this.

We had wolfed down our dinner and were half way through our second bottle of wine when Bulgarian pops brought out the rakia. Nanci opted out but being British I am unable to turn down free alcohol.

Nanci saved the last bit of her omelette for Mycro and left me to enjoy the booze and kittens.

“I could happily live in a place like this. So frickin peaceful and beautiful. Surrounded by raspberry fields and lakes and mountains and diverse wildlife. Free of bullshit. (mostly)

Saying that, there was actually wifi there but Bulgarian pops couldn’t figure out his internet situation. I can’t say I missed checking Facebook or whatsapp. People don’t need to be constantly connected like that. It’s actually very draining. I realise the irony in the fact that I wrote this on my iPhone, intending to upload it to the web but those things just don’t matter so much up there. You enjoy the simple and basic things like building a fire, eating wild fruits and just being able to have shelter at night and sleep in a warm sleeping bag, wool underclothes to keep out the cold and most of all fresh water sources when you can find them. And of course finding raspberry wine (yep, totally a necessary basic!)

Between here and Lakatnik we only saw three cars pass and a dude with some sheep and another dude living in a hut with some cows and dogs and I really don’t feel lonely at all. How can you feel lonely surrounded by the sounds of all the animals in the forest, plus Nanci snoring at night and ummm, Bulgarian pops with his Bulgarian TV.

8:22pm and it’s dark now. Sat on the front porch I can here nothing but Bulgarian pops tv, the sound of the trees, possibly a bell on a cow or goat, kittens purring and various insects. I am still supping the half glass of rakia and the 3 kittens have claimed my lap. I’d love to put them all in my sleeping bag but Mycro will freak out. He is actually scared of kittens.

I think Nanci has passed out in the tent. I’m not too good at early nights but there is literally nothing to do in the pitch darkness other than play on my colouring app or listen to beasties crawling around and allow my imagination to invent monsters and all sorts of messed up shit …ummm, wait, that’s not where we are going here. Oops!”

I ended up chatting with Bulgarian pops till late having discovered he spoke Portuguese and understood and little bit of Spanish although my Spanish is very basic (actually it’s appallingly bad) we managed to converse.

Day IV

The next day two rather tall and sexy German dudes, Alex and Phillip arrived at Trastena. Their plan was to hike to Murgash. Phillip showed us how to make a hobo stove using an old tin and some white spirit. They didn’t hang around for long. After sampling the wine and rechecking their route, we wished them good luck and off they went.

Bulgarian pops also left for Sofia that day, leaving us with the house key. Nanci picked some fresh veggies from the garden and cooked up some soup in the kitchen then I decided to clean it from top to bottom. The grease on top of the shelves was so thick I had to scrape it off. Yes, I have some serious cleaning issues. It probably hadn’t been touched in years.

Later in the afternoon we walked up the hill to where Nanci said she saw some horses. They were wearing bells which is what I had heard from over in the raspberry fields the previous night. We followed the sound of the clanging bells and soon enough we found a family of about six horses including a young foal and a beautiful black stallion.

 

From up there, the view of the lakes and mountains is epic.

Later we packed up and went to bed early as we wanted to be up early in the morning to leave.

DAY V

I awoke to find out that one of the kittens was missing. The slightly ‘special’ looking white and brown one. Nanci said she hadn’t seen it all morning. We figured maybe an owl had got her during the night. I was rather sad about this but as we headed over to the house the cute little mong faced kitty came running over to us. We were glad it wasn’t dead after all. Yay!

We had some morning wake up coffee, ate breakfast, said goodbye to the three kitties (I actually picked them up and kissed each of them, one at a time) then we headed up the hill for our next hike.

Aiming for the Leskova hut we hiked for most of the day and got right to the top of one of the peaks where we stopped to check the nap and ate some dried figs, cashews and chick peas to get some energy.

At this point we briefly lost the trail and had to climb down some massive rocks and through a forest where we eventually found the trail again. We thought so anyway.

By now it was getting towards sundown so we decided I find a place to camp. We found an old house that had been stripped of everything and left to ruin.

Random old hut where me made our home for a night

After setting up camp in the garden we built a fire and cooked up made some mushy pasta before heading to bed. It was cold and uncomfortable so neither of us slept too well. Even Mycro snuggled up in between us. Normally he would just growl at me. Maybe it was because he pee’d on my pee which is probably his freaky dog pack initiation thing… or it could just be a weird fetish of his. Nanci says it’s so the zombies don’t find us.

We got up early next morning having had little sleep and since we were low on water and our feet were beginning to fall apart we made it our mission to find the Leskova hut.

We grazed on delicious blackberries along the mountain trail. A pack of horses galloped past us which was a pretty awesome sight.

Goodbye Horses!

We found St Duh (it’s probably not pronounced like that but it amuses us) which is a clearing of really old trees and an old cross. Nanci told me more about the place but I forget.

Leskova would be about an hour from here. We passed a huge herd of cows and some herders who pointed us in the direction of Leskova.

After trudging down a steep hill which totally killed our feet, a bit of a winding trail and we finally made it to the Leskova Hut.

Yay! We made it to Leskova Hut.

Our feet were sore, our backs aching, both of us were ready to pass out. As we arrived we were greeted by a group of huge Bulgarian men who were drinking beers, chopping wood and cooking up some food. They welcomed us to join their man party of course we did and we spent the evening drinking whiskey and dancing (at least, speak for myself on the whiskey and dancing front) I even challenged one of the guys to a wrestling match (hilarious) and Nanci attempted to arm wrestle the one with enormous forearms and at one point we both managed to take one of them down. Sadly I was far too distracted to remember to take any photos.

Much later, the guys packed up and left in their 4×4 vehicles and I finally rolled in to bed after everyone had gone. Nanci had sensibly bailed a few hours before me.

Day VI

I was awoken during the early hours by an urgent need to pee  but the toilets were a trek down a steep bank and my feet were very sore and it was still too dark to attempt such a feat so I found a suitable hedge.

I rejoined the living sometime around midday to find Nanci cooking some oats and grains and dried fruit for a late breakfast.

We spent the day resting and nursing out battered feet. I discovered three open wounds on my left foot and one on my right. Not good. All bandaged up, I shuffled slowly down to the toilet for the unavoidable daily poop. The descent and ascent in total took me around 10 mins, again a hole in the ground in a hut but much less horrifying than the one at Trastena .

We took out the old maps and planned the next route which would be back down from the mountains and to the train station. We hoped to find someone driving our way to give us a lift since walking would be painful and most likely at snail pace.

Late in the afternoon We began to roast some potatoes and an onion on the fire, Nanci did the wood chopping and I made a salad with leftover tomatoes and cucumbers from the hut.

Bulgarian tomatoes are enormous and quite delicious. We melted Leftover cheese on the spuds and made some coffee. Nom nom nom!

Nanci getting some cook on.

Nom Nom Nom!

Behold, Nanci the mountain women

Then early to bed for me. Or at least messing around on my colouring app and refusing to move from the bed in the hut.

We were apparently joined by another hiker by the name of Caleb. Like Nanci he was originally from Oregon. I never met our mysterious traveling friend as he was already donning his backpack and marching up the track away from the hut when I awoke the next morning. That there, was a man on a mission.

Day VII – The Descent

We drank some coffee and ate some beans, re-bandaged our feet and began our hike back to St Duh.

The upward trek back to the road was painful and slow. To distract myself from the pain I began singing annoying songs whilst trying to walk in time to the rhythm. I got through a healthy portion of “The Wheels on the Bus” which among the usual list and a great deal of others, featured murderers going “kill kill kill” and alcoholic priests going “drink feck arse”. I got through a lengthened and slightly more epic version of “on top of spaghetti” which an old school friend and I wrote back in our primary school days and then the obligatory (for me personally) “Where’s me jumper?” By the Sultans of Ping. Nanci was about half a mile ahead and therefore did not have to suffer my singing.

As we tailed the path before reaching St Duh, we were greeted by the awesome sight of more horses only these ones did not have bells on, they were wild and damn they were beautiful! They watched us as we passed, not at all afraid of us but wary of our presence.

Wild Horses of the Balkans.

Back to St Duh. We dropped our packs and hugged one of the huge ancient trees.

Treehuggers

 

Around 6KM down the mountain later we made it to a village.
Wooohoooo! Civilisation and beer!

We found a place that Nanci recognised from her previous visit a few years back. They provide accommodation and serve food and drinks in a cute little garden.

It had all sorts of animals, ostriches, deer, cats … and this frickin T-Rex!

I had to snap this picture especially because I have a very special friend who is nuts about dinosaurs. (This one is for you,  Batstork 😉)

After filling our bellies with food a a beer each, we trudged onwards for the final leg. It would be miles and miles to the next village and back down off the mountain it was baking hot.

As usual I fell asleep on my feet and began walking in a zig zag fashion with my eyes half shut and brain on standby. I even walked right into the foot of the mountain at one point which I thought was highly amusing. Luckily I am a pro at walking around in this state which in Narcolepsy world is known as autopilot or automatic behaviour.

My meds soon kicked in though and relatively normal function resumed at which point I began  yelling “car!” Each time one passed to alert Nanci in the hope that one of us would be able to flag one down. It was unlikely that we were going to make it to the train station before sunset and we would have had to camp again somewhere at the foot of the mountain. Suddenly, I yelled “van!” And we both leaped excitedly as the kind man pulled over. Turns out he is the mountain village delivery man on his rounds although Nanci much prefers to believe he was sharing secrets.

He waved at various folk, both old and young through every village we drove through, occasionally stopping to hand over a pint of milk or take some money and an order from old Bulgarian pops. So refreshing to see humanity at its best for a change, people helicopter my each other out and smiling and waving at the delivery man on his rounds. If I weren’t so naturally bloody cynical it would have completely restored my faith in humans.

The nice man with a van dropped is off at the train station and we realised just how long it would have taken us to walk. We were extremely thankful but he refused our offer of payment and waved us goodbye.

Hooray! We made it … Almost!

After a long wait in the sweltering heat, our stylish old, slightly battered and graffiti adorned train arrived. Back to Sofia.

Waiting for the train back to Sofia

Abandoned communist buildings and quarry

 

Hooray!  That was a bloody epic and fantastic seven days in the beautiful Balkan mountains and a month of crazy shenanigans.  Thanks for inviting me with you Nanci! 🙂

P.S. SORRY IF ANY ANNOYING ADVERTS APPEAR ON THIS PAGE.
BLOODY CAPITALIST SCUM, Hahaha

TwatSkull and the death of Prince

Dear Mr Death (TwatSkull)

I regret to inform you that you have made a grave error. A right royal mix up, one might say. It has come to our attention since your most recent collection that the artist formally alive and well, known as Prince, has left this mortal coil.
According to our files, you were in fact supposed to remove a member of the British monarchy.
We realise you have been very busy lately and can see how this would have been an easy mistake to make what with a number of earthlings carrying the title of Prince.

However, this is not the first time you have failed to remove a member of this very same family.
As we have discussed previously, taking bribes from wealthy vampires is simply unacceptable and will only result in them eventually getting found out.

We are all well aware that these Royal folk do like to drag it out. We must nip this in the bud before the whole ‘blood sucking vampire’ thing becomes blatantly obvious.
Of course we hope that this was nothing more than an honest mistake.
It would be greatly appreciated if you would kindly return the artist formally known as Prince and proceed to collect the correct Royal as stated in the contract, dated April 2016.

We may even be persuaded to look the other way If you happen to bring the mini bus and fill it with a few of them. The more the merrier.

After you have made amends, please have yourself a long vacation.

Yours eventually

Miss B Flowers

Earth, Human Resources
RIP Beautiful talented superfreak!

I will credit the photo when this shit has sunk in and it’s not 4am.

Sister to Sister

The story of One Super Action Hero, Tribal Belly Dancing Sister, and her mission to help women in the Congo. 

Despite living all over the world, sisters and brothers in the Tribal Belly Dance community are very connected and supportive towards one another. That is just one of the things that is wonderful about Tribal Belly Dance.

When I took my ATS® General skills and teacher training certificates for the first time, back in 2009, I met a lady called Kelley Beeston of Kalash Tribal (Devon, UK)
I was very pleased to find that I wouldn’t be the only English lady traveling to San Francisco to do the course. Kelley as it turns out, is a riot of a lady and we had some proper belly laughs during our time together. I have met her on several occasions since and we remain connected via facebook.

Over the past few years, as well as studying to an advanced level as an ATS® teacher and performer, Kelley has devoted a lot of her time to help women in the Congo. Along with her husband, they set up a fundraising project. I follow it’s progress and receive updates. I am not exaggerating when I say I am deeply moved when I see the videos and read about what this project is doing for these women.

“Every time I visit Congo the women approach me for help because I am a woman. Many are the victims of gender based violence including sexual violence during conflict, many have lost their husbands and in both scenarios the woman will be cast out from her family to fend for herself. I realised that these women needed help and this got me thinking – wouldn’t it be fantastic if my dance troupe could do something. So we did – Kalash Tribal organised a haflah and raised enough money to buy a much-needed fishing net.” – Kelley Beeston

I sort of told Kelley that I wouldn’t refer to her as some sort of Tribal Belly Dancing action hero but I just couldn’t ignore that fact, because Kelley travels to the Congo to visit these women in very dangerous areas. Risking her life. I recall one facebook update where Kelley was visiting the Congo and I they were stopped by local militia and instead of panicking, Kelley gave one of them a serious talking to which you might think is slightly mad, but it was also ridiculously brave and knowing Kelley, she probably didn’t think twice before stepping up.

Despite these perilous encounters, Kelley has not been discouraged in her mission.

Kelley doesn’t do this because she gets paid. This is self-funded. She doesn’t do it for Kudos. She does it because those women reached out to her. Kelley doesn’t see these women as strangers from a foreign land but as fellow human beings and sisters.

After the success of the first fundraiser which provided the community with a fishing net, the project continues, one of the funds helps to provide contraceptive implants and the other is a sustainable sewing co-operative.

NGO’s often train people for a period of 6 months in different skills from sewing and hairdressing to welding and building but then they are left to their own devices with no means of continuing as they can not afford to buy equipment.

So, the goal was to sewing workshop where women can come to use the equipment.

Thanks to the positive response and support so far, The Sister to Sister project is fully in place with one sewing workshop built and a group of women with new found opportunities.

This does not mean the mission is accomplished though, the dire situation that these women have been living in does not simply disappear over night if ever.

There are more much needed resources and these projects don’t happen because of the sheer will of one woman. They happen because so many of us have reached out to our sisters and provided support by spreading awareness and helping raise the funds.  This isn’t going to stop anytime soon, it is an ongoing situation that deserves our attention. Because women like Kelley are willing to traverse the globe and risk their own safety, from sister to sister, we can change lives.

I wanted  to show my love and support for all the hard work that Kelley and her husband have done. As i mentioned before, I have donated a little bit of money but equally as important is the need to spread awareness so that is why I decided to write this.

I know people that are involved in all sorts of amazing and important fundraising and humanitarian work going on. It’s impossible to support every single worthy project in every way but this one really does change lives.

So on that note, I am going to leave you with some videos and links to further information. I am sure you will be as moved as I am.

https://vimeo.com/96589864

And here is Kelley speaking about the sewing workshop.

https://vimeo.com/131592226

Click here for More info about the sewing project

Click here for more info about the contraceptive implant project

Thank you for your kind support.

Change Your World. Human Trafficking Campaign.

Earlier this year, I was involved in an Anti Human Trafficking campaign in Malaysia, Organised by NGO Change Your World, the aim of the campaign, was to raise awareness and educate people about Human Trafficking and empower the public to be able to act.

The first part of the program was ‘Trapped’ which travelled to 16 locations in Selangor. Mostly Universities and Shopping Malls. We did live interactive performances, art exhibits and flashmobs. When I was asked if I was interested in supporting the campaign I had no idea I would end up being locked in a bus as a domestic slave, beaten by an abuser. Thankfully I was also saved by members of the public who completed the task of handing in their question cards before the time was up. My other job was to give bruises to the other performers. Actually, I have become the go to girl for injury type make-up effects.

After one performance, a university student approached me in tears and said she was so moved by the scene as it was so realistic. Turns out I can act as well, apparently. Being in Malaysia the obvious thing to do in that situation was to put my arm around her and take a selfie.

This short video shows the campaign highlights. See if you can spot me.

Since then, I have begun teaching dance to a group of women who are victims of trafficking. They are being held in a shelter while they go through the legal process. They have to prove that they were in fact, victims of trafficking and as far as I understand, after they have completed this process, they will be deported back to their home countries, often without safe passage or any way of ensuring that they will not end up back in the hands of criminals. The NGO Tenaganita is working to try to persuade the government to allow them access to the girls so that they are safe and protected upon their return home.

All I am able to do is give them my time and hopefully empower them through the dance I am teaching them. Hopefully, enable them to reconnect with their feminity in a positive way. In Malaysia though, Belly Dance still considered to be linked to prostitution and stripping and is occasionally written about in the media in a negative light so we decided the best way to deal with that is to call it ‘Tribal Dance’.

These women are of a variety of ages and are mostly from places like Vietnam, Indonesia and India and most of them do not speak English so I have the help of a translator. Luckily, Tribal Belly Dance is a language of its own and despite any language barriers we are still able to connect and I am able to show them how to improvise with each other.

I hope to be able to do this for many more groups of women who live in poverty and have not had the same opportunities in life as myself as well as those who have experienced violence or been victims of trafficking.

If you would like to donate clothes or toiletries to the women at the centre in Kuala Lumpur, please contact me on whatsapp +60125997687

If you would like to know more about the work of the NGO that ran this awareness campaign, visit their website Change Your World

And the organisation that works with trafficked victims Tenaganita

So… I should probably talk about dance.

Since my blog up and moved from its previous home at http://bduktv.blogspot.com  (in case you fancy a gander), my posts have mainly consisted of ranting and complaining about one thing or another. You have probably already figured out what some of my pet peeves are, however, as well as being a disdainful blogger, I am also a dancer. I feel I should try to write more about that, at least on occasion. The thing is, one of my favourite Belly Dance blogs is by Princess Farhana, and she writes far more interesting stuff about the subject than I ever could. Secondly, while I am first and foremost, a dancer, I have opinions on just about everything and I would be keeping from you, a plethora of weird, random thoughts and angry rantings, if I were to only ever write about dance.

Today though, I would like to share with you, what it has been like, as a professional dancer, to move from ‘sunny’ England to Malaysia.

I wrote about my first visit to KL, in a previous blog on over on blogspot, so I won’t go in to that too much. Essentially, that visit, lead to my moving here in January 2013.  Skip to September 2014, I am now married (that escalated quickly!) We have two cats, Monkey and Lemur and my mission, to Tribalise Malaysia, is ongoing. 

What is the Belly Dance scene like here in Malaysia? 

In comparison to the UK and European Belly Dance community, Malaysia has a small and sparse Belly Dance scene. There is a handful of major players who tend to run the majority of workshops and events that take place. There are not many small hafla’s and intimate friendly dance gatherings, they tend to be bigger shows on a stage, a sit down meal, often in a hotel or large restaurant. The UK has both, big stage shows, and throughout the year, many small Hafla’s where student troupes and beginners are given an opportunity to perform without the pressure of a big stage show.

As for Tribal Belly Dance, it is very new over here. American Tribal Style in particular, is not very well understood by many here at the moment, there is but a small handful of Tribal Belly Dancers. Currently, I am the only certified ATS teacher in the whole of South East Asia! In Nottingham, I was the first of my gang to gain the teacher training cert and become a FCBD sister studio, but now almost all members of my UK troupe are certified I am so proud of them! 🙂

The UK is saturated with Belly Dancers of all styles now and there are so many monthly events there, promoters often struggle to avoid clashes. But it is, on the whole and despite a few areas of politics and nonsense, a wonderful and supportive community. 

People often ask me if there was any culture shock, moving to a predominantly muslim country. Actually no, but what was more of a culture shock for me, was coming from such a thriving tribal scene to a place where there are less than ten Tribal dancers.
Going from having at least one performance a week, most of the year and teaching a few days a week, to sparse bookings for performances and most of all, having very few friends outside of the few dancers I know but rarely see. 

Finding students who are dedicated and really want to learn tribal was tricky at first in Nottingham, but eventually I found my girls, my beautiful tribal sister, Anna Sollini along with Pip, Robyn, Charlotte, Caz and the rest of that scallywag tribal bunch. My friend Denise, who journeyed with me from the start. In the hands of Anna and Denise, the school is doing really well now, often with a waiting list for students. Here, I currently rely on small groups of private students because trying to run ATS classes proved to be difficult with too many people coming and going. It was hard to get past the basics.

Learning ATS is rather like learning a language, therefore, in order to be able to begin to communicate through the dance form, students need to be consistent with attendance or it is impossible to create the sense of working together in a troupe or experience the camaraderie that you get from doing so.

I did manage to form a troupe for a few shows, but they have scattered for now. All of them, gorgeous dancers, life has taken them elsewhere. Perhaps, it is simply that the universe has not felt it was time yet, to unite me with whomever I am destined to dance with. Or perhaps, it is that my sisters back home, will always be the ones, with whom, I was most able to connect.

Still, it is early days. Patience and persistence are key. I am not going anywhere until I have inspired at least one person to become a certified ATS teacher.

With time, I am sure more people here will begin to appreciate how truly wonderful and life changing it is to be able to dance, in a troupe, without choreography, without words, synchronised and connected through dance.

Does anyone know whom I need to credit for this photo?

 

UK Tribal Fusion Belly Dance DVD, Volume I

UK Tribal Fusion Belly Dance DVD, Volume One

SHOWCASING SOME OF THE FINEST UK TRIBAL FUSION PERFORMERS!

On this DVD
• Performances from
  Fulya, Alexis Southall, Dawn O’Brien, Bex, Beatrice Flowers, Darkstar
• Instruction from Fulya, Alexis Southall, Dawn, Bex and Darkstar
• DVD introduction by Beatrice
• Alternative Camera angle options
• Running time Over 2 hours

BUY YOUR COPY OF THE DVD HERE!

BUY YOUR COPY OF THE DVD HERE!

This DVD was produced by BDUK.TV, a small independent production company based in Nottingham, UK, co-run by Beatrice Flowers alongside Dug Robson.
We decided to make this DVD to showcase some of the best of the UK Tribal Fusion Scene, this is the first DVD of it’s kind to come out of the UK and we hope to make more. We watched a lot of Belly Dance DVD’s to see what other people had been doing previously with the editing style and one thing I hear a lot from dancers is that they like to be able to see the whole choreography so we decided to shoot the DVD in multiple camera angles and include an option to view each performance as a straight frontal shot so that the choreography can be seen properly as well as the DVD edit which is a bit more interesting to watch.

Each performance has a themed stage set although my own performance was really stripped down as It was actually an improvisation so I didn’t feel it needed much of a set. The DVD begins with Fulya, performing her Pink Panther choreography, a sassy burlesque inspired piece which she follows by teaching a combo from the dance.
Secondly is Alexis Southall with a beautiful fluid choreography performed to End Of The Month by Broken, which she also teaches a section from. Alexis had the most elaborate set, filled with sumptuous vintage trinkets, we even dug out an old grammar phone for this one. Dawn’s was the most amusing set, as she performed to Hayseed Dixie’s version of Duelling Banjos, so the set included barrels, gun cases, wellington boots, a rake, the obligatory banjo and a rocking chair which also features on the final performance, Darkstar’s Women In Black choreography, watching her from backstage darkness got creepier every take. Darkstar teaches some tutting combinations from her performance which I had a fun following during the filming. Bex only needed some candles and pumpkins on stage to compliment her Dark fusion performance, set to The Undertaker by Puscifer from the movie Underworld.
Bex’s tagline, Belly Dance with Battitude, has always been my favourite!

Bex, Bellydance with Battitude Tee-Shirt

I still need that T-shirt! Fancy one yourself? Visit Bex’s online store

Second to last is me with my fusion improv, performed to a cut down version of a track by The McCarricks. I was the only one that didn’t teach, the reason was because I had to fly over from Malaysia to finish filming the DVD and complete the editing and I just ran out of time so we xopted to have me introduce the DVD instead.

I have had comments about the DVD having a ‘gothic’ theme, in fact this was totally unintentional. We selected a number of dancers that we felt had made notable contributions to the UK Fusion Belly Dance community and then asked them to join the project and it just happened to include some dancers that you might say are in touch with their dark side, I can definitely include myself as one of those! Tribal Fusion often attracts dancers who are also part of a subculture so although the DVD was never intentionally meant to be themed in that way, it was well received by the Gothic Belly Dance community.
Check out the DVD trailer!

BUY YOUR COPY OF THE DVD HERE!

ABOUT THE DANCERS

DARKSTAR
Darkstar is one of the UK’s most celebrated performers of Tribal and Dark Fusion Belly Dance. She loves to use robotics, tutting and fluid stylisations to create dynamic, engaging routines. Renowned for her creative choreography and musicality, she often creates theatrical and emotionally charged routines to showcase the creative side of her dance. She has progressed to developed her own unique style termed ‘Belly Popping’, a fusion of Belly dance and Popping (a street dance funk style) which she has encompassed within a darker aesthetic.

Having taught and performed all over Europe and the US she has an extensive CV in all manor of events with particular performance highlights in New York, Washington DC, San Francisco, Montreal, Paris and Milan to name a few. Training intensively within Belly Dance, Tribal Fusion and Popping, she studied with leading performers in these dance forms and is now passionate about passing down her knowledge and inspiring students in these intense and captivating dance style. Aside from traveling all over the world seeking continued dance development her favorite training ground is Pineapple dance Studios, London’s leader in all forms of dance where she attends weekly classes.

Darkstar is the event organiser and creative director of Dark Britannia, Londons yearly dark and theatrical show and training weekend founded in 2012 which attracts dancers world wide. In 2013 Darkstar Dance company evolved, whereby Darkstar as the Creative Director and Lead Choreographer, produced ‘The Belly Dancer’, a 3 night show as part of the Camden Fringe Festival, which went on to be a huge success selling out all 3 shows and winning rave reviews from critics in the heart of Camden Town London. When she is not developing her own dance, travelling or running her popular events she teaches weekly classes in London and is always working hard to train her advanced student group and her semi professional group ‘Team Darkstar’ who are a dedicated group of dancers that have trained under her guidance for a number of years and are the future of our dance. Visit darkstardance.co.uk

ALEXIS SOUTHALL
Alexis Southall is a professional Tribal Fusion bellydance teacher and performer based in Wolverhampton, England. She is recognized for her deep curves, seamless flow and speedy, precise accents. Known for her generous, warm and inspirational teaching style, she has been praised for her technique, flawless musicality and innovative choreographies and improvisations.

Over the past 20 years she has studied various forms of dance. Alexis has dedicated herself to Tribal Fusion for the past 7 years, studying extensively with Zoe Jakes, Samantha Emanuel, Kami Liddle, Olivia Kissel and Amy Sigil, to name a few.

She is a Suhaila Salimpour Level 1 certified dancer, Level 1 & 2 certified in UNMATA’s Hot Pot ITS format and has FatChanceBellyDance® General Skills for ATS®. She is currently training for Level 1 in the Jamila Salimpour format, and believes in being a life-long student of dance and movement.

As well as her solo work, Alexis has collaborated with performers such as Martina Crowe-Hewett, Yahna and HYBRID Dance Project, and in 2012 she became a member of Ambrosia | Glam Tribal dance company.

Outside of teaching and performing, Alexis makes jewelry, organizes the Infusion Emporium festival in Wolverhampton, and is a co-organiser of Gothla UK festival.

With new projects and her dance continuing to evolve, Alexis is excited to see what the future holds, and hopes to dance with you soon.

You can find out more about Alexis at alexissouthall.com

BEX
Bex is an award winning, International Dark Tribal Fusion performer and instructor from the Black Country in the Midlands, UK. A lifelong member of the UK Goth Scene and ex-DJ for one of the country’s top Goth nights, Bex has been able to use her passion for exquisite clothing and alternative music to add a much spookier twist to Tribal Fusion Bellydance.

Bex is well-known for her blend of creepy characterization, spooky costuming and strong Tribal Fusion technique. Having studied extensively with teachers from around the world and in various styles of dance she has pioneered Horror-Psychobilly Fusion which blends her own preferences in traditional Horror and the 1940s and 1950s Rockabilly aesthetic with Tribal Fusion movement and technique. She utilizes her own personal style to create a visually spooky look with beautiful movement and creepy costuming.

Bex is a certified BlackSheep BellyDance Level 1, 2 and 3 Instructor and teaches both Tribal Fusion and BlackSheep classes weekly back home. She has performed with many groups and dance sisters including Alexis Southall, Tasmin Leona, Kajira Djoumahna, Khalgani (the UK’s first synchronized group for improvised Tribal BellyDance) as well as being a founder member of Dark Circus Collaborative – a Tribal Fusion Troupe based in the UK. She enjoys performing with and directing her student troupes, Lunatique, and more recently her BlackSheep Troupe, Iron Maidens Tribal.

Bex also organises Dark Tribal Fusion events and workshops in her home town and has taught and performed Dark Fusion Bellydance and Horror-Psychobilly Fusion to sell out audiences across the UK, Europe and USA. She is in demand around the globe for blending dark theatrics with strength and character as well as being an experienced and fully qualified teacher in Fine Art and Dance.

Bex’s workshops deliver sound knowledge in Dark Tribal Fusion. Her work and belief in developing the student’s sense of self and expression with individual movement through dance has led to her becoming a sought after teacher in Dark Fusion Bellydance.

Bex believes Halloween should be celebrated every day…

More information can be found at: bexbellydance.co.uk

FULYA
Fulya is a full time Bellydance & Burlesque teacher, performer, costumier and event organiser. She is well known as a fusion bellydance performer and constantly seeks to push boundaries and re-define her art.

Every aspect of her performance is carefully planned and constructed from concept to execution, all parts are equally important.  Music choice, costume, make up and even hair style are all carefully crafted to help tell the dances story and she enjoys every part of the journey.
As a teacher she is noted for being warm and encouraging, with an ability to break movements and combo’s down into easy and manageable chunks with many different explanations, methods of learning and plenty of vivid imagery. Fulya has been teaching since 2000 and holds various qualifications in dance and teaching, the most recently acquired is Trinity College’s Safe Exercise and Effective Dance Practice (NQF Level 5)

Fulya is also a musician and writes articles for various belly dance magazine such as Majency
She runs Kookie Kaftan Bazaar and “Bellydance and Burlesque” Shows with her sister Julie, And is the director of Tribal Troupe Tribe-ulations

DAWN O’BRIEN of KHALGANI
Dawn began dancing at a very early age and has always been influenced by artistry, whether through dance or from visual pieces. She found bellydance in 1996 and instantly became hooked. Her dance philosophy is “What else can we do?” and is a theme that has continued through her
work to the present day.

Fascinated by the endless possibilities of the human form in dance, she has studied yoga extensively, branching into contortionism and enterology, martial arts and many styles of dance. Dawn has always considered herself to be a lifelong student and has trained with the elite within the fields of ATS®/SGI, Tribal Fusion and Egyptian Dance.

Inspired by many dance styles and forms of movement, she began pioneering Cyber Fusion in 2006, a dance style that fuses street dance, club and popular culture.

Dawn is a sought-after instructor and performer, her knowledge of anatomy and dance dynamics combined with an open and natural teaching style enables students to achieve their maximum potential during her classes and workshops. She has performed and taught internationally and
is a founding member of BAMBA, teaching Bellydance and Tribal Bellydance locally in Birmingham and Walsall since 2000.

Dawn currently teaches in the Midlands, as well as running sell out Drills & Thrills Intensives nationwide.  Visit birminghambellydance.co.uk

BEATRICE FLOWERS
Beatrice began taking music and dance lessons in early childhood, trained in classical and contemporary Ballet for nine years pursued a career in music throughout her teens always keeping dance closely by her side, studying costume and choreography at college. In 2004 she began taking Egyptian style Belly Dance classes (Raqs Sharqi) and like many others soon discovered Tribal style, became hooked and has since been learning, teaching and performing with many highly respected performers around the UK and internationally.

In Feb 2009 Beatrice went to San Francisco to train under Carolena Nericcio on the ATS® general skills and teacher training courses at Fat Chance Belly Dance Studios, becoming Nottingham’s first ATS® certified teacher. After returning to the UK she founded the Nottingham Tribal Belly dance Company a sister studio to FCBD and became a member of ATS® troupe, Koyuki Tribal.

In 2013 Beatrice moved to Kuala Lumpur to set up Malaysia’s first FCBD sister studio, support and promote the local dance community and raise money for orphaned Elephants. Malaysia’s first ever FCBD sister studio troupe is called Khashada Tribal.
The Arabic word khashada means ‘congregate, collect together’ and then ‘gather together to help.’ Beatrice joined forces with The Middle East Dance Academy, also the very first dance studio of it’s kind to exist in Malaysia.

As well as Belly Dance, she has studied Ballet, classical Indian dance and Butoh and also dances with fire props, swords and Isis wings. Her personal style is a fusion of all of the different styles learned over the years, respectfully combining them as well as taking inspiration from many different things such as: film, vintage lifestyle and clothing, costuming paintings, music … anything can be an inspiration!

Beatrice has also hosted events such as ‘Shangri-la Lounge’ an annual Vaudeville Belly dance show in Nottingham, UK featuring top performers such as The Uzumé (NL), Horus Mozarabe (Portugal), Darkstar, Bex, Equador, The Wizard, Katie Holland and Moirai Tribal. The event also included a weekend of workshops. After 7 years, the final show took place in Sept 2012.

Other projects include Unit24 Productions and BDUK.TV, an independent production company specialising in film and photography for artists and performers, releaseing the first ever UK Tribal Fusion Belly Dance DVD in 2013.

Her mission: To shimmy around the world, armed with a big sword, huge skirts, pretty hair flowers and a coin bra. Gather as much dance knowledge as humanly possible and share these wonderful experiences with everyone she meets along the way. Visit www.beatriceflowers.com

BUY YOUR COPY OF THE DVD HERE!

CREDITS: Biogs and Photos:
Fulya, Alexis Southall,Dawn O’Brien, Bex Beatrice Flowers and Darkstar