Health – Diary of a Disabled Person.

Doctor Google.

As a nutritionist working in medical research, one of the banes of my existence is Dr Google. “I read an article that said-”, “But I found on the internet that-”, “I saw a video that suggested-”…

In this day & age it goes without saying that you cannot trust everything you read online (except for this blog, obviously), & that the advice of experts is even more valuable among this information overload. So, when I hear medical professionals bad-mouthing those who turn to the internet & self-diagnose, on many levels I agree with them.

However, perhaps we are too quick to judge the people who do this.

While I had an unusually quick diagnosis of Myalgic Encephalomyelitis (& that is not to say that the process is quick or easy even in these cases), I would go on to face other struggles. When I started showing symptoms of depression, complete emotional breakdowns, self-harm, & even a suicide attempt amongst them, I was refused a diagnosis of depression. It was just low mood. I was doing it for attention. Worst of all, these were symptoms of ME, a disease that was clearly all in my head. Apparently, a diagnosis would cause me to express more symptoms via some kind of placebo effect, but without a diagnosis I couldn’t access proper treatment. It was left to spiral further & further out of control until finally I was granted access to medication; medication I still use to this day.

A few years later I was experiencing sickness to the point where I couldn’t even keep water down, & was getting pains so furious it made it hard to breathe. I was given a diagnosis of gastroenteritis, even when the doctor admitted that the symptoms didn’t match this diagnosis, & I was sent on my way. Of course, the problems continued, & it took a junior doctor who hadn’t yet been trained to view all patients as stupid to do extra blood tests, which showed abnormal results. As I went for an ultrasound scan the nurse waxed lyrical about how I didn’t have gall stones, despite the symptoms & the blood test results pointing to exactly that. Surprise or the century; I had gall stones.

When they accidentally left a gall stone behind after removing my gall bladder because they decided not to perform a simple test, I returned with the same symptoms. I was disbelieved on all levels, & a doctor who never met me had my saline drip removed as he was adamant I should just drink more water. Drink more I did, but it only meant I vomited more back up. I was accused of being a fake and almost forced out of hospital still suffering symptoms which I was apparently making up, before finally a radiologist found the problem. A gall stone had been left behind, which I had been telling them was so for almost a week.

Currently I’m trying to get another diagnosis for something I’ve been dealing with for almost 11 years. It runs in the family & not only do I express the symptoms, but I’ve followed the exact developmental patterns it caused in my mother. GP after GP after GP refused to believe me, telling me it was just puberty, even at the age of 22. I finally got a hospital referral where the doctor believes it to be a psychological problem, & they “forgot” to give me another appointment until almost a year later I had had enough. I am still waiting for them to even do the diagnostic test.

We know our bodies best. We know how they normally feel & how they shouldn’t feel. We know when we’ve had enough. I have immense respect for the medical professional but when patients are sent away without answers, support, or even the hope of support in the future, of course they turn to the internet for help. People used to turn to witches or priests in exactly the same capacity.

I will follow the advice of a medical professional, but that presumes that I am given advice to begin with.

The Rejects: 6 Assumptions About Nutrition That Are Utter Bull.

Food and nutrition pops up in our news feeds every day, with someone claiming that eating carrots will make the sun shine out of our backsides, or that broccoli will obliterate all illness from the face of the Earth. There are several assumptions and clichés associated with the subject, leaving qualified nutritionists and dieticians rocking back and forth in the corner of a padded cell. As a recently qualified nutritionist who hasn’t been assigned a padded cell yet, I’m going to rant about these assumptions and hope that someone takes notice of me.

Nutrition isn’t a valid subject.

If I had a lollipop for every time someone said “oh that’s just eating your greens, right?” I’d be diabetic by now. Trust me, after (perhaps stupidly) spending 3 years and £27,000 to study the various ways of becoming diabetic, I would know. Taking a week long online course can give someone a basic overview of nutrition, but it’s a little insulting when that online course is equated with a degree, especially when that degree covers everything from food safety and legal requirements to physical chemistry and biochemistry. That isn’t even comedic hyperbole; it’s the truth.

Sports nutrition is the same thing as nutrition nutrition.

Before all the sports nutritionists start foaming at the mouth like one of their beloved protein shakes, I am not saying that sports nutrition is an invalid subject. It’s just a different subject.

While I would be able to give an athlete general advice on how much protein to eat from which foods, I wouldn’t be able to give specific advice where sport is concerned. This is primarily because my capacity for sports is summed up by my inability to throw a piece of paper in the bin that is less than a metre away from me, but also because I studied gross diseases that make for perfect dinner conversation. Where a sports nutritionist can give general advice about eating healthily, they might not be as clear on individual variations and needs such as diseases.

Supplements are the best thing since someone realised they could make money from them.

I don’t know how many times qualified medical professionals have to say this, but over-the-counter supplements are a waste of money. You excrete excess nutrients in your urine if you even manage to absorb them, so essentially you’ve created the planets most expensive piss. If you don’t absorb the nutrients, they’ll take an alternative route into the toilet. Many scientific papers also note that multivitamins only improve nutrient levels in the body when a relatively healthy diet is already in place, meaning that the supplements can’t be used as a fruit-and-veg replacement.

If that isn’t enough of an incentive to stop, how about the various means by which multivitamins can cause physiological damage when overused? Their overuse may even be a risk factor for obesity.

When supplements are prescribed by a doctor, they help to treat a deficiency in a particular nutrient, and are essential for recovery. Otherwise, in all honesty, save your money.

Anyway, if you wonder why the models and actresses on TV adverts for these supplements always look so glamourous and happy, I think you’ll find that make-up, Photoshop, and a big pay check have a lot to account for.

Weight Loss is Easy.

Aside from amputating a leg, there is no way to shift loads of weight instantly, and I’m not an advocate of unnecessary limb removal.

Starving yourself for rapid weight loss can result in all sorts of unpleasantness, such as bad breath and the inability to take a dump. Oh, and death. It can be down-right hazardous to health, which is the very opposite of what you’re trying to achieve by losing weight.

Think about it this way; if Weight Watchers actually worked, they’d go out of business. Their yogurts are great though. Seriously, they’re good.

Nutritionists are judging you.

In just about every scientific paper where dietary habits have been recorded, it is recognised that what is recorded may not be what was actually eaten. There are lots of reasons for this; short of weighing something it’s difficult to get accurate portion sizes, it’s easy to forget drinks and snacks consumed between mealtimes, and quite frankly, people lie.

When asked to record what they’ve eaten, people will often say they have eaten less of the typically unhealthy foods, and more of the typically healthy foods, than what they actually ate. They do this because they think a nutritionist would look at their actual diet and heartlessly berate them until they started crying. In reality, the more accurate information the nutritionist receives, the more they’ll be able to provide help. Everyone makes mistakes or bad choices concerning food at some point, partly because there are so many social, commercial, and biological factors controlling food intake that it is impossible to control them all.

Nutritionists aren’t judges; they’re food-doctors.

Nutritionists eat nothing but raw broccoli.

Having dedicated three years of my life to studying food, I think the conclusion that I really like food is plausible. In particular, I like cake.

Somewhat strangely, people always manage to catch me sinking my teeth into a big, sugary, creamy, diabetes-inducing slice of chocolate gateau, and then call me a hypocrite (or sometimes just a hippo). I get told I shouldn’t eat it because I’m a nutritionist. Clearly they have failed to realise that nutritionists are actually human beings with the same nutritional needs as everybody else, and therefore are also capable of eating cake without dying immediately in response to inorganic glucose touching our delicate lips.

What they also don’t realise is that I am actually making a great sacrifice for humanity by eating cake. In doing so I am reducing the availability of cake for everyone else, removing temptation from their path. It truly is a great sacrifice to make for the benefit of society and has absolutely nothing to do with the affinity of my taste buds to cake.

Nutrition is a nerdy subject for nerds who like to eat, and I honestly can’t think of a better example of leaving it to the experts. Actually, nuclear physics springs to mind. Yeah, definitely don’t want amateurs playing with nuclear equipment; we all know what happened the last time someone did that…

The Rejects: 6 Things in Food Way More Dangerous Than Additives.

Back in the wildly free and untroubled days of 2007, newspaper headlines would have had you believe that food additives were going to be the cause of the apocalypse. While the subject has dropped in and out of news cycles ever since, the stigma about additives has never really gone away. As someone with a degree in nutrition, and my course leader being a toxicology expert, this has come to be one of my pet peeves (alongside student loans), particularly as there are some things lurking in our diets that pose a much bigger threat.

Unfriendly Microbes.

At one time or another, we have all experienced the unpleasant side effects of ingesting microbes not meant to be ingested. Salmonella and certain species of E.Coli can cause a short period of evacuating the contents of the digestive system (isn’t it just amazing how much the digestive system can hold?), but for the majority of us no further effects are felt. There are, however, rarer microbes that can cause more problems; those problems being suspiciously grim reaper shaped.

Take the wonderfully named Listeria Monocytogenes, most famous for being the reason pregnant women are told to avoid soft cheese. This little gem can cause Listeriosis, which has a staggering mortality rate of 24%, and can cause miscarriages and neonatal death, as well as more cheerful things like meningitis.

Before the internet loses its mind and starts lobbying against soft cheeses, it should be said that cases are rare. Still, speaking from personal experience, meningitis is probably best avoided.

Botox.

Then there are the things that microbes leave behind.

Clostridium Botulinum produces the deadliest toxin in the entire universe, to our knowledge. Admittedly, getting people to sign up for space exploration programmes to find an even deadlier toxin is proving difficult, but that’s beside the point.

Botulinum toxin blocks nerve function, causing paralysis and eventually death by not-being-able-to-move-the-diaphragm asphyxiation. It also happens to be what people inject into their faces to maintain that youthful plastic look we all desire, so at least the insides of your intestines will look nice when you absorb it.

Again, cases are rare, but also probably best avoided given the 5 – 10% mortality rate.

Party Pooper; Not a Fungi.

I’m sure you’ll be delighted to know that microbes aren’t the only thing found in foods that are way more dangerous than additives.

Much like Clostridium Botulinum some fungi are able to produce toxins, albeit less deadly ones. Included in this group are the Ergot alkaloids from Claviceps species, which just so happens to have LSD as one of their many chemical derivatives. The most significant toxin of these, however, is from the Aspergillus species which can produce a family of toxins called aflatoxins.

To cut a long story short, the prolonged consumption of aflatoxins causes liver cancer. You’re unlikely to immediately drop dead after consuming this toxin, which must be a comforting thought if you’ve made it this far through the article, but that may simply be because it’s biding its time and choosing a more convenient moment to murder you. Think positive.

Cyanide.

Hard-core Agatha Christie fans (a series of words I never expected to write) will know what cyanide, the world’s most famous poison, smells like; almonds. That would be because almonds are full of the stuff.

Obviously you may be wondering why everyone who has ever consumed an almond hasn’t dropped dead; we roast them (the heat kind, not the insult kind). The heat triggers a chemical reaction which gets rid of the cyanide, and we can safely eat them without becoming the next unfortunate subject of an Agatha Christie book.

Just to help you sleep at night, cyanide can also be found in cherry stones and apple pips. While swallowing apple pips doesn’t result in internal apple tree growth, consume too many of them (an insane amount), and you could become a victim of cyanide poisoning yourself. Safe to say an apple a day isn’t guaranteed to keep the doctor away.

Essential Nutrient Vitamin A.

To the people who say you can never have too much of a good thing, I present to you; science – taking the fun out of everything forever.

Vitamin A is an essential nutrient needed for survival, and plays important roles in the immune system and eyesight among other things. Unfortunately vitamin A dissolves in fat, which means that if you get too much of it, you don’t flush it down the toilet if you catch my meaning. Instead, it gets stored with the rest of the fat, where it accumulates. The liver works itself senseless trying to process the extra vitamin A, but eventually the point of no return will be reached, and death becomes imminent.

So now you know; even something that is essential for survival can go ahead and kill you anyway, and there’s no justice in this bleak universe.

All-natural Fruit Sugar.

The food industry likes to use the words “natural” and “organic” a lot because people think that means “healthy”. What it actually means is “I’m going to charge you more for this”.

We all know that fruit is good for us. It’s rich in fibre and nutrients, particularly vitamin C, and its low in calories. Unfortunately even fruit has turned against us with an all-natural sugar it produces; fructose.

The problem stems from the fact that humans were never meant to have year-round access to fruit, which only comes in season once a year without our intervention. Therefore the body simply never produced a mechanism to process fructose, and so the liver uncontrollably turns fructose into fats at a tremendous rate, this fat then being linked to a plethora of conditions like obesity and diabetes. For a few weeks of the year the liver could manage this with ease, but not on a constant basis.

The main cause of fructose damage is actually not fruit itself, but high-fructose corn syrup, so continuing to eat fruit regularly remains a good thing. This simply goes to prove that a typically healthy, organic, all-natural food still contains dangers far in excess of additives.

Also water and fortification with vitamins and minerals count as additives. So unless water is bad for us now…

What Came Before.

Given that the title of this blog is Diary of a Disabled Person you could be easily forgiven for thinking that discussing my life prior to disability is somewhat irrelevant. However having had many conversations with able-bodied people who accidentally discriminated against the disabled and pleaded ignorance, I have been able to reflect on my own actions before disability was a factor in my life.

The saying that “you never imagine that something like this could happen to you before it does happen” is clichéd, but it is also true. Before a virus decided my brain tissue looked like a tasty meal, disability was something other people had to deal with. Of course had you asked me, I would have thought myself to be highly inclusive and non-discriminatory, a result of my ignorance. I realise that in my time at school I have probably obstructed a corridor, left someone disabled to struggle with a door, and stepped across the front of a wheelchair without a second thought. I probably spoke to someone in a patronising tone or ignored them altogether in favour of speaking to whoever they were with. I certainly never stopped to consider that I could enter buildings that wheelchair users couldn’t, by virtue of the fact that I could climb up steps. Had I been old enough to drive chances are I would have parked over a lowered kerb. My parents brought me up not to misuse disabled facilities like toilets and changing rooms, but other than that, I probably caused many disabled people a headache or two.

All of these little annoyances that now occur in my daily life I have probably put someone else through and while I hate to make excuses, I would say that most were a result of ignorance. No one in the family was disabled at the time, none of my friends were disabled, and I wasn’t disabled; I had no experience to learn from. This is why I try to have a little patience with others when they simply didn’t know or realise that what they were doing would cause me extra trouble, particularly if they are genuinely apologetic and help me resolve the issue when it is brought to their attention. I will
sometimes try to reassure them that I used to do similar things out of ignorance myself.

There are however, a group of “ignorant” people that I find difficult to deal with. There are those who take exception to me having a problem with blocked access routes, and neither apologise nor help me resolve the issue, often giving me a mouthful of abuse for daring to burst their precious little bubble in the process. Many car drivers will move forwards to clear a kerb drop only to roll back over it once I have passed, leaving it blocked for any other wheelchair users. Others tell me they’ll only be there a minute and to be patient, despite the fact that this attitude can make me late to wherever I am headed.
Then, there are the worst of them all; the people who park in disabled bays, and use their changing rooms and toilets who don’t need to, usually because they want to take their pram/trolley/shopping bags into a larger room with them, and not when all the other facilities were already in use. These people are invariably the rudest and most inconsiderate, and certainly cannot plead ignorance when there are signs everywhere highlighting that disabled people should have priority access to those facilities. I knew better than that as a child, and I know I would never have been that inconsiderate
as an able-bodied adult.
I believe genuine ignorance to be a forgivable reason for accidental ableism. However when people choose to carry on impeding the disabled by continuing to do things they know are ableist, neither apologising nor helping me to rectify the issue or simply disobeying the signs displayed clearly around the facility, I cannot accept ignorance as an excuse. It is these people who are truly ableist and shouldn’t get to hide behind half-hearted excuses to avoid responsibility.

Nutritional Nutters.

Some would say that completing a degree with a disability is quite an achievement, but as a Millennial even the greatest of achievements pales in comparison to the terrible flaws displayed by my generation that will surely be the end of society itself. People will always find faults if they are looking for them and as such, it has been made apparent to me that being disabled with any sort of medical knowledge is completely incompatible, because surely everyone with this knowledge is in perfect health all of the time and would cure themselves with their knowledge should they fall ill.

Approximately a year ago I was diagnosed with iron deficiency anaemia, which I have since recovered from. At the time the response I invariably received upon revealing my deficiency to someone was, “but I thought you were a nutritionist”. The truth was that a tablet I was taking limited the absorption of iron in the intestine and despite my dietary iron intake being perfectly adequate, most of the iron was quite literally being flushed down the toilet. Of course, despite the fact that I have spent three years and thousands of pounds dedicated to the subject, the person I was speaking to knew far more than me having read about it on Wikipedia, and I was just making up excuses for being a poor nutritionist. Just about anyone with any medical knowledge or experience in a clinic will roll their eyes at this point; while I can hardly criticise using the internet, because well… I’m on the internet, it can be the bane of our lives.

The same logic has been applied to my disability; admittedly there are a few dietary tricks that can help maintain energy levels throughout the day, but certainly there is no scientific evidence showing a particular diet that will immediately cause me to leap out of my wheelchair completely free of disease for the first time in years. The closest I ever get to feeling like that is when someone offers me chocolate cake, because although I know the many ways in which cake could potentially kill me, I like cake, particularly the chocolate kind. The fact that I am chronically ill is frequently used to evidence my incapability in my chosen field, which is almost as annoying as receiving a smug look before being told nutritionists shouldn’t eat chocolate cake. Why this would apply specifically to nutritionists and no other human being on the planet is beyond me, but clearly I know only that I know nothing.

There is also one deep flaw in the thought process behind such accusations; nutrition is very rarely used as a cure, but is actually used to treat a disease or manage symptoms. Ask any diabetic this and they will confirm that no matter how many visits they have with a dietitian, altering their diet will not make their pancreas behave itself, merely managing the consequences instead. Likewise I use nutrition to help me manage the symptoms of my condition, not to cure it. By my albeit somewhat biased logic, this makes me an even better nutritionist, as I have experience in altering the diet to suit my needs while still satisfying my cravings for chocolate cake. It is by stating that nutrition rarely cures to people I deem to be “Nutritional Nutters” that I return their self-satisfied smugness, in a dish that is far more nutritious when served cold.