Managing Chronic Illness: 02 - Food and Fluids

 

For the next six weeks we're doing something a little different. We're talking about chronic illness, its impacts and how best to manage those impacts and still get shit done.

This is, however, going to be an HONEST look at chronic illness. Be sure you are mentally equipped to handle that before reading further.

This week, we're looking at food and fluids.

Cooking is Hard and Sometimes Dangerous:

Cooking when you are chronically ill can be difficult and sometimes dangerous. People with MS and nerve conditions can give themselves horrific burns without realising. Often, if I try and cook with a migraine, I will zone out and forget the food. This usually results in ruined food, if not an actual house fire. Another thing that happens is if my hands are shaky, I can drop things, resulting in a house full of broken glass, or accidentally slice myself with knives.

Just preparing a meal when chronically ill can result in serious harm or injury—even if you're only reheating something.

This is a pain in the ass, because we all have to eat and if we can't feed ourselves, someone else has to do it for us. Which is humiliating. However, if you are in this situation, rest assured, you are not alone. And you shouldn't be humiliated when you are otherwise being forced to choose between going hungry or your house burning down.

Hello, Allergies and Intolerances!

Many people with chronic illness also end up with food intolerances or allergies. This is because chronic illness usually involves inflammation somewhere. And inflammation somewhere triggers inflammation in other places, like, say, your gut. If a doctor hasn't told you this before, feel free to burn down the whole clinic—may as well rebuild that trash fire from the ground up.

So not only is cooking more difficult for chronically ill people, but we are also often limited by the types of food we can eat. Many chronic illnesses also directly contribute to eating problems, because many chronic illnesses have a gut component. Or else our medication might cause gut problems.

Thing is, it can be hard to find foods that don't make us shit like a confetti cannon. Or just never shit again without weapons grade laxatives.

And if you do find foods that don't turn your bathroom into a horror movie, they might be difficult, or even impossible for you to prepare regularly. And don't even get me started on eating out with friends.

Everyone has different, sometimes illogical, food issues:

You know that friend you have who is convinced if you just tried THEIR diet, you would be as healthy as them? Set that person on fire. Get new friends. And if you have been that friend, set yourself on fire and stop doing that shit.

Veganism works great for you? Fantastic. I have low iron, can't eat any legumes or many iron rich foods, can't have iron supplements without throwing up, and they can't get a line on me to do infusions because I have shitty veins. I have to eat red meat twice a day. TWICE A DAY. And I ain't that morally phased by cannibalism either, so hit me up with your bullshit advice again, I dare you.

However, if you're vegan and you come to my house, you can bet your ass I am going to have an awesome vegan meal waiting for you. Because it works for you, and I am happy for you.

If you're frustrated, because you can eat one brand of cheese and not another almost identical brand, its probably not in your head. Just eat the cheese you can eat and stop worrying about looking like a liar. Its your fucking health and anyone who thinks you're making it up for attention just doesn't realise how fucking frustrating it is. Or humiliating. Or time consuming. Or they just haven't had to share a bathroom with you.

Food Is Medicine:

Why am I telling you all this stuff you already know? Mostly so you know, I know how hard it is. Because I am about to get mean again.

Despite the difficulties, you must think of food as medication. You must take it as seriously as a prescription. Which means you must stop eating foods that aren't good for you, just because they make you feel good at the time. That's like taking recreational drugs instead of your meds.

Trust me, I KNOW what it feels like to wake up and know the only good thing that is going to happen to you that day is a packet of Tim Tams. I know what its like when you've woken up and you're going to be in pain for sixteen hours, get nothing done, then go to sleep to prepare for the next sixteen hours of pain. I know how horrific it is, when that bar of chocolate is the only part of the day that isn't going to suck.

However, if you want to get to days where you can do things, where the entire day doesn't suck, where the best part of the day ISN'T shitty food, then you have to give up eating the shitty food. Food is an abusive partner. You can't be in a great relationship without leaving the bad one.

We all have different intolerances, but, and this is a big but, WE ALL HAVE THE SAME NUTRITINAL NEEDS. I mean, not exactly, but we all need protein, we all need vitamins, we all need fibre, we all need calcium and salt, etc. Just because its HARD for you to eat something, doesn't mean you don't need it. And, if you want to admit it or not, the lack of it in your diet is probably contributing to you feeling like shit. So, if you find a way to get on top of it, you will feel less shit.

This is going to mean educating yourself on what the human body needs. Please choose to learn from sources that aren't f-ing stupid. Peer reviewed sources that aren't being paid by the food industry, please. I recommend the CSIRO (and their meal/diet books). If that all sounds like too much, find a good dietician instead.

You Are Mostly Fluid:

When I was sixteen, a girl the same age as me, who went to a neighbouring high school, died of dehydration. Or, more specifically, she died of kidney failure which was caused by dehydration. She was not sick, or camping, or isolated in any way. Actually, she just spent a hot weekend partying and drank a lot of alcohol and no water or soda.

When I lived up the top end (Far North Queensland), the older generations, particularly the drovers and people who walked outdoors, lived by a golden rule: 'Don't sleep until you've peed.'

If you couldn't pee before getting into bed, you had to keep drinking until you could. Why? Stops you dying of dehydration or suffering organ damage. Because when you are dehydrated, your body holds on to fluid, recycling it over and over, making it more and more toxic. When you start drinking, it flushes out all that toxic water as urine, rehydrating with the new, clean water. It takes a long time for you pee to become really toxic. Which is why you can keep drinking it to stay alive. But eventually the compounds the pee is supposed to flush out will build up in your body and do a lot of harm.

So, this is why we are told to drink two litres of water a day. It rinses through our body, cleaning out bad stuff, that is then expelled in our pee. That is the function of kidneys and urine. Water also allows us to pass faeces. Obviously dry faeces aren't going anywhere. And it is expelled when we breath and sweat.

Most of us don't drink water though—we drink water with stuff in it. Soft drink, juice, coffee, milk, etc. Hopefully this isn't news to you, but most juice has the same, if not more sugar than soft drink. And soft drink is bad for a whole variety of reasons, not least of all because the gas causes your stomach to stretch and a stretched stomach makes it harder to feel full, so you over eat. I am going to talk about caffeine in another post, but I'm not a huge fan of that either.

If possible, I am a big fan of just drinking water, or home-made juice. Since a huge portion of your sugar intake is probably coming from your fluids, I want you to ask yourself if you really NEED to be drinking soda/juice/flavoured milk or if you just WANT to, because it's comforting and you like it.

Fluids are also medicine. Don't ignore it just because you don't have to chew it.

How to Manage Food and Fluids:

Firstly, you need to know what you can and can't eat. This is a pain in the ass and, to the best of my knowledge, can only really be done with trial and error. A dietician will be able to help you with an exclusion diet. Which is about as fun as being sent to prison for a fun, three-month retreat.

Once you know what you can and can't eat, the next step is making it accessible to yourself. This is when shit either falls apart, or a new, magic time in your life begins. So, how do you make healthy, home cooked meals accessible?

Planning. It all comes down to planning and preparation. You need 3-4 dinner/lunches you can bulk cook and freeze, and you need at least one breakfast you can pre-prepare, or make instantly without too much effort. A good example for breakfast is overnight oats (google for easy recipes) or toast.

Lunches and dinners are going to be soups, stews, casseroles, things you can pre-prepare, leave in the freezer, and then whack into a slow cooker, sauces, etc. Many days the only thing I can safely eat is things that can be stuck in the oven and left there until a timer goes off. So, home made pasties, pies and sausage rolls are great.

Plan what you are going to eat and when you are going to eat it. Three meals a day? Five? One? Whatever works for you is fine, just be realistic and do it with your BEST HEALTH in mind, not what is convenient.

Write a list of the ingredients you need for a week. Buy them. Shopping online is good, I like having groceries delivered. Now, if you have meat and fresh veg, you will have a limited time to prepare it. Set aside a whole day, preferably with someone to help you, where you are going to prepare all your meals for the week, then put them in the freezer/fridge.

Then, simply heat and eat.

Final Ass-kicking:

I know cooking your own healthy food is more effort than ordering a pizza. I know its not as tasty as a pizza. I know you want sugar and fat and cheese to make yourself feel better. But it is not making you feel better. Its making you sicker. We both know it, its time we were both honest about it.

This blog series is not about feeling good. Its about doing the hard work so we can inch toward good health and actually have lives worth living. Would you rather eat junk, accomplish nothing you dreamed about, and die? Or would you rather suffer a little more now, so in the future you have the chance of achieving your goals before you die? Because we're all going to die. Its just a matter of when and what we do before then.

I know it seems super impossible and like it won't make a difference. Maybe it won't, I'm not going to lie. Maybe you could eat the healthiest diet in the world and still never be well enough to spend a half day off the couch. But its better to try and fail. Because its not really failing, its just finding another thing that doesn't work.

Maybe the first healthy diet you try will make you sicker (I did green smoothies for months, HUGE mistake, my iron levels bottomed out and it took me a year to recover). Maybe what you think of as healthy is not healthy for you. Maybe you can keep tweaking and eventually you will find something that works. Maybe it will work well enough you can get on top of something else. And then that will allow you isolate another symptom, and so on and so forth.

That is how I did it. I'm still sick, I'm still a work in progress, but I'm getting there. Its taken over ten years of effort, but I am so happy have progressed. Those ten years were going to pass either way, and if I had done nothing I would probably be dead, or in a care facility with a nurse changing my diaper.

You can get on top of this too. It's time to dig up.

Managing Chronic Illness: 01 - Chronic Illness Sucks

For the next six weeks we're doing something a little different. We're talking about chronic illness, its impacts and how best to manage those impacts and still get shit done. If you are chronically ill and a writer, this can be applied to writing and if you are not chronically ill, but write, these posts could help give you a raw insight into chronic illness, so hopefully there is still something for everyone. And by 'everyone' I mean 'the handful of people who regularly read my blog'.

This is, however, going to be an HONEST look at chronic illness. Be sure you are mentally equipped to handle that before reading further.

Running order is going to be something like this:

1. Introduction to how shitty life is with chronic illness. (AKA, the post you are reading now.)

2. Food and fluids. (Also poop.)

3. Sleep and lifestyle aids.

4. Medication and exercise.

5. Socialisation, time management and goal setting.

6. Dealing with medical professionals without killing them or yourself.

Firstly, let me say, I am not a doctor. Which is, generally speaking, a good thing, as anyone with a chronic illness can tell you most doctors are not only assholes, but dangerously and criminally incompetent when it comes to chronic illness.

THAT SAID, if any of my advice contradicts your doctor's advice, don't be a moron and try and sue me when you go off your medication cold turkey and suffer heart failure. All advice I am giving is general, and as such should not be applied to any individual circumstances without considering a holistic overview of your situation.

On the other hand, if your doctor hasn't talked to you about all this stuff, they're a shit doctor. Find a better one.

So being chronically ill sucks. There is a huge and varied list of the way it sucks and there are literally no pros, except that you get to spend more time with your pets. Here is a list of some of the sucky parts. I'm write this list so 1) healthy people can get some perspective and 2) chronically ill people can see they are not alone.

Sucky things:

1. Its often embarrassing. Sometimes for dozens of reasons, like frequent vomiting, diarrhea, falling over, diapers, relying on other people for things four-year olds can do, weird skin things, bad smells, brain fog that makes you say dumb shit. Chronically ill people spent a lot of time completely humiliated and it wears on our self-esteem.

2. You're always tired and thinking is hard.

3. You're always in pain. Constant pain causes a whole range of psychologically detrimental effects, like loss of empathy, confusion, exhaustion, lowered self-control (or in my case, no self-control at all), mood swings, depression and so on. You are literally being tortured, 24-7 for years at a time, and are expected to go on living your life. Which is not reasonable, but people act like it is in a kind of sadistic, society wide gas-lighting.

4. Socialising is hard. Because of all the things I already mentioned, as well as mobility issues that just make socialising impractical and a huge waste of precious resources.

5. Which goes hand in hand with: you're usually lonely.

6. You're on tons of shitty meds that you don't want to take, but need to stay alive and even partially functional. But you're not really functional. Your life sucks and its always horrible and you still have to take 30+ meds a day or it would be worse.

7. People give you shit for those meds. In fact, people give you shit for all kinds of things. And even if they aren't giving you shit, you're imagining them giving you shit. And you find yourself being grateful for people who show basic human decency, and you spend your time with friends thanking them for walking slowly, and other dumb, dehumanising shit like that.                                                             

8. Sometimes when chronically ill people die, other people are relieved, and you realise that when you die, there are people around you who will say shit like: "At least she's not suffering anymore." And you'll be dead, so you can't punch them in the mouth. People also make movies like 'Me Before You' (2016), romanticising the idea that the best thing you can do for loved ones is DIE so you aren't a huge burden on them.

9. Being chronically ill is heinously expensive, but you're chronically ill, so you can't work. Which means you almost never have the money for the things that would make your life more tolerable.

Now, if you read back over that list, you will realise that most of the things that suck about chronic illness, would suck a lot less if we were not living in a dystopian hell and the general population were capable of empathy and human decency. But we are, and they aren't, so we need to work with what we're given.

The only way to live like a human being AND be chronically ill, is to arm yourself appropriately.

Some chronically ill people are lucky enough to have diagnoses. Some aren't. Either way, this applies to both. You need to learn everything you can.

If your disease has a name, dedicate yourself to becoming the world's foremost expert on the subject. Learn biology. Read the scientific papers until you understand them. Read forums. Read books. Go to—or watch videos of—conferences. Know the names of all the leading experts in the research field. Email them and ask them to put you on any email blasts on the topic. Do NOT bother them for advice or talk about your personal circumstances, you want information from them, not help. Never stop researching and learning.

If you don't have a diagnosis, you're going to do the same, but instead of researching a disease, you're going to research symptoms and talk to other people with the same symptoms. You're going to learn everything you can about potential diseases and get tested when you can.

Doctors have come to the conclusion that while I HAVE an illness and there are clear markers of it in tests, the disease has no name and has not yet been identified. So, I am pioneering my own treatment. I had a friend with fatigue who started to get better, he was using an approved drug for an off-label use. I did too. It worked for me. As new meds come out that might possibly treat my symptoms, I try them. I try everything.

EVERYTHING, even if I know its dumb and it won't work. Crystals? Tried em. Acupuncture? Meditation? Weird diets? Faith healing? Fasting? Doesn't matter what it is, if I have heard of it, I have tried it. I have had cameras in every orifice. I have had needles in my spine, my arms, my ass. Nearly every part of me has been biopsied.

I periodically (and don't do this at home, kids), stop taking my meds and change the combinations to see if I can take less, or to check what symptoms they are causing rather than preventing. I push my doctors to get me on trials, I bring them research, I present hypothesis and the results of my experiments on myself.

Its hard, and its horrible, and it often makes things worse. Two days of trials can take two months to recover from. But each time I learn something new, I refine my diagnosis, and I edge a little bit closer to health. I am clawing back my productivity, a few extra minutes a day at a time.

The hard truth is, no one else is going to fight for you. You have to do this yourself. Its going to take years and years, but there is a slim chance, it will be worth it in the long run. So you have to hold on to that slim chance. Don't ever give up on it.

And to help you with that, the next five posts are going to be about how best to combat all those shitty things, so you can scrape enough of yourself together to start digging up.