Tag Archives: dysautonomia

When you know someone who can’t eat

Posted in Uncategorized by

Alright friends, I have one last post for Feeding Tube Awareness Week! My previous two posts this week talked about what it’s like when you can’t eat, and today I’m talking about what to do when you know someone who can’t eat.

To recap, as many of us with feeding tubes know, we live in a very food-centric society, a fact that becomes painfully obvious when all of a sudden you find yourself unable to eat like everyone else. Think about it — family dinners, lunch with friends, coffee dates, dinner dates, picnics, treats at the office for someone’s birthday, happy hour, Halloween candy, wine tours, chocolate on Valentine’s Day, Thanksgiving dinner, meeting for drinks, juice cleanses, summer barbecues, going for ice cream, wedding toasts, cheers-ing. As a society, our social lives are built around food.

For those of us who are unable to eat, we don’t want to miss out on everything, but it can also be really awkward to be surrounded by food all the time. And for those of you who are able to eat, it can be awkward to know how to include us. There are many different reasons for someone to need a feeding tube or be on TPN, so it’s not a one-size-fits-all situation when it comes to having a friend or loved one who is unable to eat, but here are some basic guidelines on how to approach it.

For starters, whenever possible, try to hang out with us in a way that doesn’t revolve around food. Many of us with feeding tubes are dealing with chronic illnesses that leave us short on energy, so low-key activities are great places to start. Think movie afternoons, coloring parties and craft sessions. We also likely spend a lot of time going to appointments and running boring medical errands, but your company can make these tasks a little more exciting.

As for the rest of the time when food is a focus?

Respect our restrictions. Sometimes “just one bite” really can be a problem. If we say “no thanks” or turn down your offer, it’s not personal, it’s self-protective. Please don’t keep encouraging us to try something, because we might feel pressured to please you but then end up suffering consequences later.

Keep inviting us. Acknowledge that we might not want to join in, and try not to take it personally if that’s the case, but please keep giving us the option. Not being able to eat while everyone around us eats is hard, but missing out and not being invited at all is hard, too.

Shift the focus. When possible, create a situation where food isn’t the only focus. For example, if it’s warm enough outside, eat dinner on the deck so we can enjoy nature and have lots to look at rather than not knowing where to look while everyone else at the table is eating.

Let us take the lead. Don’t make it a requirement that we sit at the table while everyone is eating, and if we choose to leave the room, let us be. We may need to leave the room if the smells are strong or our symptoms are acting up, but we also may need to leave the room if we’re having a bad “I really miss food” week and we just can’t stand to watch you eat our favorite meal.

Enjoy your food. And don’t feel bad for doing so! In fact, we want you to enjoy what you’re eating because we would give anything to be able to eat it, too. There’s no need to apologize for enjoying your food…please don’t take a taste, look at us sympathetically and then say “I’m sorry, but this is so delicious!” All that does is draw attention to the fact that we’re not eating and remind us that we’re missing out. Feel free to exclaim over your food all you want, but the apology isn’t necessary.

Resist the Q and A. Avoid questions such as, “Is this just torture for you?” or, “Oh man, I would just die if I couldn’t eat! How do you do it?” while you’re eating in front of us. One, it likely is slightly torturous. And two, if it’s not torturous, that’s because we’ve managed to focus on something other than food, and we don’t need you to keep reminding us of it.

Our illnesses are not enviable as weight loss strategies. Joking that you want our condition so you won’t eat so much or so you can lose weight is not funny, it’s insensitive. Usually when people say things like this they are trying to make us feel better, but it usually just makes us feel misunderstood.

Appreciate. Appreciate your food. Appreciate your body. Your body can take the food you eat, digest it and turn it into fuel, all without making you sick and miserable. Do you know how incredible that is?! Now and again, take a second to recognize how totally cool it is that your body does what it’s supposed to do.

Basically just carry on as usual and don’t draw attention to the fact that we’re not able to eat, because I can guarantee you, we are well aware of it already! Asking questions and trying to understand how it all works and how it all feels is fine, and honestly appreciated much of the time, just try and do so at a time and place when it won’t single us out as the only one not eating.

One last thing! Thanks for loving us. Thanks for reading this. Thanks for trying to understand us a little better. It means more than you know.

12647142_10153509508781478_6433098437491336785_n

When you can’t eat part two: the feels

Posted in Uncategorized by

Whenever someone asks me a question related to what it’s like not being able to eat, I usually shrug and say, “I don’t know, I’m just used to it,” and then change the subject.

I am used to it, but that doesn’t mean I like it or that I’m always okay with it. Not being able to eat can be really tough, but trying to put it into words is also really tough so a one sentence reply is just easier. However, I’m going to give it a go, here. Yesterday I covered the facts. The logistics. I talked about how it all works, not being able to eat. Time to delve deeper now. Today, let’s talk about how it feels.

First of all, I want to eat. I ate normally for 18 years so I know what things taste like and I have favourite foods. I get cravings and when I watch people eat I want to be eating, too. I know I’m part medical device at this point in time, but I’m still human, and as a human I’m hardwired to eat in order to survive. Not being able to is frustrating and sad, and that part never goes away, it just becomes part of your normal.

I cycle through different this-is-what-not-eating-feels-like phases.

There are times when it honestly does not bother me, when that frustration and sadness are easy to forget about. I sip on my ginger ale, I eat a lifesaver here and there, and I don’t really give it a second thought.

Then there are times when the absence of food in my life is impossible to ignore. Imagine going on a roller coaster that’s really fun at first but then you start to feel sick and you just want to it be over. Afterward you think “yikes, I don’t want to do that again.” Except everyone else had so much fun and wants to go again. You still feel sick and don’t want to feel worse, but you also don’t want to miss out on the fun, so you go with them once more. This time you have an even worse experience and so you decide you just cannot ride that roller coaster anymore. But everyone else is still having so much fun and they decide to ride it again. And again. And again. And you just have to sit there watching and waiting for them to stop riding the roller coaster. Yes, you are glad they are having a great time, but you feel so left out and it seems so unfair how something that is supposed to be easy and fun makes you feel so terrible. You hate your body for getting in the way of your ability to enjoy life. You’re stuck there just watching and waiting for everyone to get tired of that roller coaster, but they never do. Sometimes not being able to eat is like that, and during these ‘roller coaster phases’ I often find myself wishing I hadn’t gone to the theme park at all.

And then there are the in-between times. During these times I feel somewhat removed from it all, kind of like when you drive someone to or from the airport. You might think, “Oh I wish I was the one going away,” but it doesn’t really phase you that you’re not. Overall you’re just happy for your friend or family member who gets to go on an adventure. Except the thing is, when all you ever do is drive people to the airport without ever actually getting to take a vacation yourself it can be hard not to feel bitter. Lots of the time I don’t mind driving people to the airport, but I do get disheartened when I realize that I can go to the airport all I want yet I can’t ever actually get on a plane. Still, when I’m in this so-called ‘airport phase’ being part of the experience in some way, even if it’s just being along for the ride, is usually better than not being part of it at all.

The thing is, though, I wish I didn’t have to choose. I wish it didn’t come down to driving people to the airport or not spending time with them at all. I wish it didn’t have to make the choice to gather with everyone and watch them eat, or to not be part of the gathering at all.

But I do. I do have to make that choice because our social lives are built around food.

It’s one of those things you don’t realize until you’re on the other side, but think about it. Family dinners, lunch with friends, coffee dates, dinner dates, picnics, treats at the office for someone’s birthday, happy hour, Halloween candy, wine tours, chocolate on Valentine’s Day, Thanksgiving dinner, meeting for drinks, juice cleanses, summer barbecues, going for ice cream, wedding toasts, cheers-ing.

Sure, I can be present for all of that, but it’s not the same as being part of it. I’m watching, not doing.

As a society we gather together around food. We celebrate around food. We sit around the table or cozy up with our coffee and tell stories, recount memories, and discuss topics of all different depths. If I want to be part of that then I have to put up with being around other people eating while I fight against the basic human instinct to do the same. And that sucks. I hate being the only one not eating, but I also hate missing out on anything. I don’t want to watch my friends and family eat food that I wish I could eat, but I do want to spend time with them.

It’s an impossible situation.

RCH TPN (3)I make a conscious and consistent effort not to think or talk about this too much for two reasons. One, I don’t want anyone to feel like they can’t eat in front of me or feel bad when they do. As hard as it is not being able to enjoy food like everyone else, it’s even worse knowing that they are enjoying it a little bit less because of me. I already feel a lot of guilt knowing how my health problems spill over into other people’s lives so the very last thing I want is for those people to have to adjust their lives for my sake even further. I don’t expect people to avoid eating in front of me and I think it would be unreasonable of me to do so. People gotta eat! I have to eat, too, I just happen to do so via my veins.

The second reason is that thinking about this all the time doesn’t help matters or change anything. Some days are harder than others, and some days the constant fight wears me down, but at the end of the day I try to be very accepting and matter of fact about it all. I can’t eat and that’s just the way it is. I can’t sing either. Or whistle. I let myself feel sad when I need to, I let myself lament sometimes that life isn’t fair, I stay away when I need to, and then I just do my best to focus my energy elsewhere. Life is hard enough without constantly thinking about how hard it is.

Now here’s where this sad posts gets happy. I don’t have food, but I do have people. Not only do I have awesome friends who also can’t eat and who understand what it’s like, but my friends and family who can eat also happen to be awesome. And not only do they understand when I don’t want to sit at the table with them, but they are just so delightful to spend time with that they make sitting at the table worth it. I would give almost anything to be able to eat, but I wouldn’t give up the people in my life.

Sure, I wish I lived in a world where I didn’t have to choose between food and people, or rather between being around people while they eat food and not being around them at all, but that’s not how it works. I do have to make that decision. When I lay it out like that, though, it doesn’t seem quite as impossible a choice to make. People with food or no people at all? People win.

I may not be able to eat, but I do have a reason to be at the table, and for that I am grateful.

Reason to go to the table

Sister, brother-in-law and brother. My all time favourite reasons for being at the table!

 

 

When you can’t eat part one: The facts

Posted in Uncategorized by

When I was in the hospital last September a lot of people there were very curious about the whole not eating thing and I got a lot of questions about it…my favourite/the most ridiculous being, “but have you ever tried eating anything?” I decided to blog about this topic, and I even asked if any of you had any questions about it over on my Facebook page, and then no post ever appeared.

Here’s the thing. It’s not that I forgot, it’s that when I started writing there was just SO much to say and I had a really hard time concisely explaining it all. But what better time than Feeding Tube Awareness Week to finally put into words what it’s like not being able to eat. Because there’s so much to say, I’m doing this in two parts.

Up first? The facts.

Disclaimer: this is just my point of view. I can’t speak for anyone else because every person experiences and reacts to things in their own way.

Alright. So, I have gastroparesis secondary to Ehlers-Danlos Syndrome. Without getting into too much detail, partly because it’s not all that exciting and partly because science doesn’t even know all the ins and outs yet, faulty connective tissue impairs my digestive tract’s ability to function properly and so my stomach and intestines don’t move food along efficiently.

Question: Are you allowed to eat?

Yes. There is nothing or no one physically stopping me from eating. I can swallow safely (though pills do have a tendency to get stuck in my throat and start to disintegrate there…ouch) and my doctors encourage me to eat when I can to maintain as much gut function as possible. However, the consequences of eating can be brutal.

Question: What happens when you eat?

Bad things. Next question…

Hah, no but in all seriousness bad things happen when I eat. Nausea is my biggest battle in life. I am constantly nauseated to some degree, but add eating and drinking to the mix, even small amounts, and my nausea gets kicked up a notch or two…or fifty. I have four different nausea medications on hand, but they don’t work miracles, they just take the edge off.

I get full very quickly. Just taking a couple of pills can make me full. The technical name for this is early satiety. And I don’t mean wow-that-was-a-satisfying-dinner-but-now-I-don’t-want-to-eat-anymore full, I mean I-can’t-believe-I-ate-all-that-what-was-I-thinking-wow-I-feel-so-so-sick-now full. In addition to the nausea, this early satiety comes with a lot of other symptoms such as bloating, abdominal pain, gas and reflux. I have a lot of chest and throat pain from reflux, and it’s not very lady-in-waiting-like of me but I love burping. Ew, right? Yeah well, let me tell you, when you’re so full and uncomfortable to the point of gagging and crying, relieving some of that pressure is magical. Keep in mind that because my stomach empties slowly these symptoms can stick around for hours.

Question: So what do you eat then?

Not much. Saltines. I can usually eat two or three saltines a day. I can drink maybe 100 to 200 mL of fluid day? Maybe. And not all in one sitting because that would be bad news bears.

IMG_9801

Lifesaver rolls in bulk. Thanks Amazon.

It takes me an entire day to drink that much, and a lot of that is just from taking meds. I also eat a small amount of fruit sorbet, a spoonful or two several times a week. We buy it from the gelato place near my house so it’s delicious but I do have to be careful as most of the flavors I like cause reflux. And then I can eat a few orange tic tacs, lifesavers or jolly ranchers here and there. Not exactly a good-for-the-teeth diet, but I work really hard to compensate for this and luckily I have a very understanding dentist who doesn’t shame me for eating candy.

Besides a tiny taste of things now and again, that’s basically all I eat. And even those things give me symptoms, sometimes really terrible symptoms, but not eating anything at all is also terrible, just in a different way, so it’s a balance.

Question: Do you feel hungry?

I don’t really get hungry, no. That growling stomach? Those hunger pangs? Those rarely happen to me anymore. I’m not an expert on the physiology of hunger and digestion, but I know that while part of hunger and satiety comes from stretch receptors and signals throughout the GI tract, part of it comes from levels of nutrients in the bloodstream. Because I’m still getting all the nutrients I need from my TPN, my body has no physiological need for food, which is what hunger is. Once in a while I will feel a small sensation of, “I think I’d like some food please,” from my stomach but when that happens it’s usually a trick! As soon as I feed it my stomach says, “Oh hold up I’m remembering that I actually don’t like food…sorry.” Sometimes I also experience that I-feel-nauseous-but-I-think-it’s-because-I-need-to-eat feeling. Also a trick.

Fun fact: my friend Leah and I frequently text each other “GTAF” which stands for Got Tricked Ate Food. It happens often enough that we have shorthand for it.

Question: Do you feel full?

Yes! I feel full pretty much all the time. Sometimes it’s just that I feel no need to eat, and sometimes I feel like I just ate even though I didn’t. And then of course when I do eat or drink anything, as I already described, that feeling of fullness reaches a miserable level.

Question: Do you get cravings?

Yes. Oh my goodness, yes! I just talked about hunger and fullness, but another pivotal player here is appetite, which is the desire to eat. I find appetite incredibly fascinating because even when I’m nauseated I still sometimes find myself wanting food despite the fact that it almost always ends badly. Oh and here’s another little fun fact for you. PMS cravings? Real. 100% real. Ladies, take it from someone who can’t eat and doesn’t even like chocolate that much, that chocolate craving you cannot ignore is legitimate.

IMG_1526 (1)

Shhhh. Hoping no one catches me browsing the fridge.

When it comes to resisting food cravings, I find placement is key. If I open the fridge and see grapes (my all-time favourite food) front and centre then I am going to have a hard time resisting them, however if they are buried in the crisper then they’re easier to ignore. Ease of access is another important factor. If I have to take a lid off of a container or rearrange things in the cupboard to get to something then I’m less likely to make the effort. As well, the longer it takes for me to get to a food, the more time I have for reason and self-control to kick in. Sometimes, though, I straight up have to get my mom to hide food from me. Like pretzels. I will probably still go looking for them but luckily she is very inventive when it comes to hiding spots.

Okay now, brace yourselves or skip to the end, because the last thing I’m going to talk about here is poop. Not mine specifically! Yikes. Just in general.

Question: Do you still poop?

You have no idea how many times I have been asked this question! If my life were a drinking game I would take a shot (do a shot?…have a shot?…drink a shot?…can you tell I’ve been sick the entire time I’ve been legal?) every time someone awkwardly asked me this question while trying not to be awkward. Here are some variations: So um, if you don’t eat anything, do you uh…? If your stomach doesn’t empty properly how do you, well, you know…? I know you’re not really putting anything into you sooo does um, does anything, um, come out of you?

This question honestly doesn’t bother me because let’s face it, if I wasn’t living it I would be curious, too! The answer is yes. Even when you don’t eat your body still produces and secretes digestive juices into your GI tract and not everything gets reabsorbed. Your body also uses your GI tract to get rid of other wastes such as bacteria and old cell components. So yup, there is still some stuff to get rid of. The reality for those of us with chronic GI disorders is that we spend way more time than we would like thinking and talking about poop, to the point that we lose all concept of TMI, but for the sake of the rest of you, I’ll just leave it here!

And there you have it. Those are some of the facts about my life without food. Tomorrow I’ll be back with part two: the feelings.

Stay tuned!