Tuesday, May 01, 2018

Food Stuff

One of the things I hear/read/am haunted by most as a person with chronic illness is the completely inaccurate thinking that changing my diet will change the status of my illnesses.  I mean... wait.   Maybe it's not completely inaccurate, because obviously diet does affect your overall health, and changing my diet could potentially kill me, so not inaccurate at all, I guess.  It's actually the thought by outsiders that changing my diet will CURE me where the inaccuracy lies.

First off, there are so many moving parts to my diet that abled people do not have to consider, that it's almost a completely different experience, eating. What do they have to do... pick a food and eat it? That is not how eating works, in my experience as a disabled person. 

And it starts with the very basics: Who has the energy to purchase and bring food into the house in the first place?  Not me.  If it's in-person shopping, 99% of the time, it's me sending someone out with a list of things, and having to be happy with whatever they come back with. (Which is usually about 75% of what I've asked for, often not exactly as I've requested, but you settle for what you can get - example: I'm allergic to certain kinds of fruit, and yet if I ask a carer to read labels and make sure that there's no pineapple in what they're buying, that doesn't always happen, so sometimes I wind up with food I can't eat.) I do a lot of my food shopping on apps or the internet, but here too, you have to settle for what you can get - the shoppers in the store decide what quality and cut of meat you get, or when the expiration date is (I have received meat on the sell-by date, for example, which means I have a limited amount of time for the meat to actually be useable).  They decide if your bananas are green, or yellow, or turning into brown.  All of the little choices you make in the supermarket are made for you, and you deal with what you get.  Shopping via app has literally kept me from starving, so the convenience of it can not be understated - someone brings the food to me, I don't have to carry anything heavy (I can't lift a package of bottled water on my very best day), and occasionally, they give me someone else's bag and I get to try something I never would have tried on my own (bc once the bag is in my kitchen, they can't take it back out), but there are still drawbacks.

That's just the simplest, first step of eating - having food available to eat.  And you can already see that there are layers of complications that a lot of abled people do not have to consider. 

Let's move on to dietary restrictions.  My own personal experience with disability and chronic illness has come with a huge list of food-related dos and don'ts, and, in talking to other disabled and chronically ill people, I have found that this is almost a universal experience.  I'm going to discuss maybe half of mine here, and I want you to just keep in mind as you're reading that I recently dislocated my jaw, so whatever fits into these basics? For a period of time also had to be nearly liquid.

  • I have to monitor my blood sugar closely, which is complicated by frequent infections and sometimes in no way related to what I have previously eaten, but needs to influence what I eat next. 
  • I need to drink upwards of a liter of water, every day, without fail, for my blood pressure. 
  • I also need to eat a high sodium diet, which is the opposite of nearly every other person's dietary recommendations, and I have had to explain it to actual nutritionists more than once. 
  • I am taking a medication that requires you to dilute it in water and drink it half an hour before eating, so I have to have the medication ready and plan out meals in advance enough so that I know 'I will be eating in a half hour'. 
  • In the meantime, the medication makes me nauseous, so I feel like not eating basically every time I drink it. 
  • I need to eat enough at each meal to take some heavy duty meds, because otherwise THEY will upset my stomach, sometimes causing vomiting, and having to start the whole cycle all over again. 
  • I sometimes require rescue medication, which also requires food, even though (in the case of migraines or extreme pain), I am generally pretty nauseous when I need to take it, and that makes taking it nearly impossible.
  • In addition, I have food allergies, food intolerances, and gastrointestinal issues that sometimes lead to me feeling full without having eaten anything in over 48 hours. 
I also deal with chronic pain, which makes cooking difficult, obviously, but also, in a less obvious way, makes eating difficult:  I am so used to tuning out the physical feelings of my body (because if I felt all the pain I feel, all the time, I would not still be alive, and one way I have found to cope is to shut down the things that feel too much), that 'normal' physical bodily stuff? Doesn't even register.  I don't remember the last time I was hungry, or what hungry even feels like.  I have to set timers on my phone so that I will drink the water I'm supposed to drink, because thirsty often doesn't register either.  I have had issues because I sometimes 'forget' to pee? Like I know it's a thing, and I feel it sometimes, but I can block it out, no problem.  I have learned, through years of hideously painful experience, that listening to my body is dangerous.  For my physical and mental health. 

So hungry? I don't know.  But does that girl scout cookie smell good? Yes: So I'mma eat it.  

Those are basic guidelines in which I have to then
1) Find the spoons to make a meal
2) Find the spoons to eat the meal

I haven't even mentioned the fact that a lot chronically ill/disabled people are caretakers or parents, and that means incorporating the needs and wants of OTHER PEOPLE into you meal planning as well.  Or that all of the "When I eat healthy, I can FEEL the difference" rhetoric is meaningless to a person who doesn't feel better, ever.  Nothing I eat makes me feel more tired, because I am already at 'exceeds human levels of tiredness' tired.  Nothing I eat ever makes me feel more energized, less in constant pain, more of whatever you are feeling that you think you need to pass on the good news about.  It is basic fuel, it somehow manages to squeak through all the restrictions I've listed, and sometimes it tastes good, and other times it fits in my mouth & I can swallow it without having to chew it more than once, and that's the level of happiness I manage to equate with what I'm eating. 

Given all those givens, if I sometimes resort to eating a sleeve of saltines, slathered in peanut butter, the LAST THING I need is for someone to come along and try to able-splain to me the horrors and evils of gluten.  I don't need anybody to explain to me that pizza isn't actually a vegetable, on a day when ordering a pizza is the only thing I have the spoons to do.  I don't need a random stranger, a doctor, a sister or you to attempt to convert me to a vegan/keto/supercalileavemethefuck alone diet plan, by suggesting that they know more about what I need physically than I do. 

Here's a hint: Ya don't.  I have lived with these restrictions (and a lot more that I haven't gone into) for this long, and managed to keep myself alive. 

When you're fighting for survival on a daily basis, sometimes remembering to count your goddamn calories is above and beyond what you are capable of doing, and that's just going to have to be ok with everybody, because I'm sick of defending it. 

It's not your business, honestly.  And if your diet works for you: Great.  So happy for you.  But you do NOT know what it's like to live in this disabled body, so I'm gonna need you to shut the hell up. 

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