Rare disease

February 28th marked rare diseases day. There are more than 6000 rare diseases out there. They are diseases for which scientific knowledge is scarce and that will affect only 1 out of 20 people sometime in their life. And guess what? I am so sick of mine. The search for well-being is starting to look strangely like wishful thinking, and I am just one step away from dropping everything, packing my bags and leaving the country. But I know better, right? Or is that just me too afraid of going for it?

But let’s not get ahead of ourselves. Backtracking for a second to my current situation – and, reality as it stands, i.e. the one I have grown accustomed to and limited myself to but that I also feel I need to find balance in – I would say I have come to a new crossroads. For the obvious reason that they were failing, I am off a second batch of treatments (including the infamous SF722) and about to go in for new exams, this time for thyroid and/or small intestine disorders and/or a liver bug. And while I fully get the iterative process, I do wonder why my doctors never simply try to see what happens if they increase my doses and prolong my treatments, instead of always looking for something new to test on me. Their theory of course is that if the anti-fungals do not show results, I must have something else besides the candidosis preventing me from getting better. My theory is a tad cruder and it goes something like this: ‘fuck it!’ – I am not your guinea pig – if you do not know what the hell you are doing, just send me to someone who does…

But I do not actually say that, obviously – even if I am dying to. Maybe I am too reasonable, too tired or simply do not function like that, or maybe, somewhere I agree with them that it is probably all much more complicated than it seems. As a matter of fact, when I think of everything I have read on this disease and the people I have talked to – be it practitioner, therapist or patient – I must note that everyone has a completely different approach to it. There is only one thing they have in common: getting you hooked for life on crazy amounts of one or the other supplement or protocol.

So, I wonder: could this be for real? Seriously? Could it be that in an age as advanced as the 21st century we remain incapable of finding a remedy for something as basic as gut bacterial imbalance – otherwise known as just another stupid bug? And how can it even be that so many of us suffer from such an imbalance in the first place? My Ayurvedic doctor told me that about 50 percent of her patients are in a similar situation as mine. 50 percent!? They have been on clean diets, monthly liver flushes, enema, basti and what not for years, and they still cannot get rid of their symptoms. Come on!

In a sense it is reassuring to know I am not the only one with uncontrollable sugar urges, massive headaches, nausea, haziness, fatigue, muscle ache, allergies, and unjustified anxiety. But it is also profoundly worrisome. I do not understand how this can be. Honestly, if you think about it: there has to be something seriously wrong with our food and the way we feed ourselves. There are plethoras of theories and legions of people way ahead of me, of course. All major religions recognize food as a possible addiction and source of disease. Hence the fastings, the Ramadans, etc.

And nowadays, the new thing going is the Master Fast System. (Well, actually, it probably is not all that new, but it is the first I heard of it.) It is about going food-less for up to more than a hundred days. It sounds absolutely insane. The next step would be to become a breatharian. And who could possibly want that? I mean… is that it? Is that my big solution: to give up on food altogether? Will that guarantee me health and peace of mind? And even if it works… what would be the cost? How do you still have a social life without food? And a professional one? And a love one? I do not get it. The whole point of solving my issues was to integrate better – live more fully – not the opposite, not retire from society.

On the other hand, I must agree that food is a hassle. It takes time, energy and money. And worse: with my allergies, it is often a headache just trying to figure out what I can or cannot eat. The few times I fasted or restricted my died, I did feel somewhat more in tune. Come to think about it, I was probably never that good at living in society anyway. I was always disturbed by all the noise, the ego clashes, the meanness and the nagging. Already as a kid, I would pull my desk way to the back of the class, just so I could sit alone, behind everyone, and focus, at my own pace. Nice and safe and attentive.

And so maybe it just might be time for me to step out of it all once again. Because, to sum up, what my search for betterment has come down to up to now is in fact a series of “worse to worse” situations: having been handed inconclusive diagnosis and useless treatments since I was a teenager; not having the luxury of that one magic word that explains to the world what is wrong; actually enduring the symptoms; having to pretend everything is fine, working through it, when I feel weak and exhausted; having unexplainable and sometimes depressing extrasensory experiences. If all of this could go away by long-term fasting, why not give it a try!

There is one issue I cannot seem to shake off though: is this just some kind of accepted form of anorexia?

February 28th marked rare diseases day. There are more than 6000 rare diseases out there. They are diseases for which scientific knowledge is scarce and that will affect only 1 out of 20 people sometime in their life. And guess what? I am so sick of mine. The search for well-being is starting to look strangely like wishful thinking, and I am just one step away from dropping everything, packing my bags and leaving the country. But I know better, right? Or is that just me too afraid of going for it?

Let’s not get ahead of ourselves. Backtracking for a second to my current situation – and, reality as it stands, i.e. the one I have grown accustomed to and limited myself to but that I also feel I need to find balance in – I would say I have come to a new crossroads. For the obvious reason that they were failing, I am off a second batch of treatments (including the infamous SF722) and about to go in for new exams, this time for thyroid and/or small intestine disorders and/or a liver bug. And while I fully get the iterative process, I do wonder why my doctors never simply try to see what happens if they increase my doses and prolong my treatments, instead of always looking for something new to test on me. Their theory of course is that if the anti-fungals do not show results, I must have something else besides the candidosis preventing me from getting better. My theory is a tad cruder and it goes something like this: ‘fuck it!’ – I am not your guinea pig – if you do not know what the hell you are doing, just send me to someone who does…

But I do not actually say that, obviously – because somewhere I agree with them that it is probably all much more complex than it seems. As a matter of fact, when I think of everything I have read on this disease and the people I have talked to – be it practitioner, therapist or patient – I must note that everyone has a completely different approach to it. There is only one thing they have in common: getting you hooked for life on crazy amounts of one or the other supplement or protocol. So, I wonder: could this be for real? Seriously? Could it be that in an age as advanced as the 21st century we remain incapable of finding a remedy for something as basic as gut bacterial imbalance – otherwise known as just another stupid bug? And how can it even be that so many of us suffer from such an imbalance in the first place? My Ayurvedic doctor told me that about 50 percent of her patients are in a similar situation as mine. 50 percent!? They have been on clean diets, monthly liver flushes, enema, basti and what not for years, and they still cannot get rid of their symptoms. Come on!

In a sense it is reassuring to know I am not the only one with uncontrollable sugar urges, massive headaches, nausea, haziness, fatigue, muscle ache, allergies, and unjustified anxiety. But it is also profoundly worrisome. I do not understand how this can be. Honestly, if you think about it: there has to be something seriously wrong with our food and the way we feed ourselves. There are plethoras of theories and legions of people way ahead of me, of course. All major religions recognize food as a possible addiction and source of disease. Hence the fastings, the Ramadans, etc. And nowadays, the new thing going is the Master Fast System. (Well, actually, it probably is not all that new, but it is the first I heard of it.) It is about going food-less for up to more than a hundred days. It sounds absolutely insane. The next step would be to become a breatharian. And who would want that? I mean… is that it? Is that my big solution: to give up on food altogether? Will that guarantee me health and peace of mind? And even if it works… what would be the cost? How do you still have a social life without food? And a professional one? And a love one? I do not get it. The whole point of solving my issues was to integrate better – live more fully – not the opposite, not retire from society.

On the other hand, I must agree that food is a hassle. It takes time, energy and money. And worse: with my allergies, it is often a headache just trying to figure out what I can or cannot eat. The few times I fasted or restricted my died, I did feel somewhat more in tune. Come to think about it, I was probably never that good at living in society anyway. I was always disturbed by all the noise, the ego clashes, the meanness and the nagging. Already as a kid, I would pull my desk way to the back of the class, just so I could sit alone, behind everyone, and focus, at my own pace. Nice and safe.

And so maybe it just might be time for me to step out of it all once again. Because, to sum up, what my search for betterment has come down to up to now is in fact a series of “worse to worse” situations: having been handed inconclusive diagnosis and useless treatments since I was a teenager; not having the luxury of that one magic word that explains to the world what is wrong; actually enduring the symptoms; having to pretend everything is fine, working through it, when I feel weak and exhausted; having unexplainable and sometimes depressing extrasensory experiences. If all of this could go away by long-term fasting, why not give it a try!

There is one issue I cannot seem to shake off though: is this just some kind of accepted form of anorexia? I know one has little to do with the other, but I am surprised to see how many (personal and commercial) fasting websites advertise weight loss as one of the perks of long-term (beyond 1 week) fasting. Pro-ana sites are scary and I wonder to what extent, maybe particularly for women, they can become the next logical step.

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