When you know someone who can’t eat

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.

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Let’s be more like babies

Yesterday afternoon I had an appointment with my TPN team at St. Paul’s Hospital and it just so happens that my cousins and their new baby live only a few blocks away from the hospital which means that before my appointment my mom and I were able to stop by for some baby cuddles (and smiles!) which was very fun.

This might sound strange but I found myself really relating to baby Nora. I’ve joked for years that having gastroparesis makes me like a baby in many ways…I don’t do well with solid food, my symptoms are best controlled when I stick to a routine, and everything is worse when I’m tired. Then there are all the similarities between having a feeding tube and being a baby…formula, feeding schedules, liquid medications. Plus just yesterday my dietitian suggested I take Vitamin D drops, the kind that babies take.

Anyway, when we showed up Nora was awake and alert. She smiled a little bit and was really engaged for a short while before she fell into a deep sleep. My mom and cousin started talking about how much energy it takes to grow as quickly as babies do and also how much energy Nora used up being so interactive and engaged for even just a short while. No wonder she was tired.

And then that’s when I had a bit of an ‘ah-ha’ moment.

Simply having a chronic illness and battling with your body all day long leaves you short on energy to begin with. Because of that, I think I notice more clearly and feel more deeply just how much energy day to day life requires. But you don’t have to have a chronic illness to get tired from interacting with other people, concentrating for long periods of time, and keeping on top of everything you have going on. I think we underestimate just how much energy keeping up with life requires.

Since being sick I have a whole new understanding of what tired feels like and try as I might to ignore the fatigue, I don’t have long before my body protests, my symptoms pop up out of nowhere and I have no option but to rest. I don’t have the choice of just pushing through anymore, but I can clearly remember doing so on a regular basis.

I remember back before I was so sick I was always ‘busy.’ When people would ask me how things were going, I would say busy. Busy but good. Busy and tired. And I mean I truly was busy and in involved in a lot of things but it was almost as if being busy and tired was a sign of success. Being tired was a good thing because it meant I was working hard. I would come home from a full day of classes and an evening teaching dance, acknowledge that I was tired and then spend several more hours that night studying anyway. I felt like I had to. Being tired didn’t seem like a good reason to take a break; being tired was more like a constant way of being.

Think about it. I bet you can think of multiple times in just the last week where you were tired yet you ignored it. Maybe, like me, you got irritated with your body for not keeping up. Or maybe you thought you didn’t have enough time to be tired.

But here’s the thing: being tired is not synonymous with being weak. It can be inconvenient and annoying, believe me! I get incredibly frustrated that I don’t have the stamina or energy to do all the things I want to do, but I’m not a lesser person because of that. Being tired is not a character flaw. It’s just a sign that your body is doing the best that it can but that right now it needs a break.

And there is no shame in taking that break. When babies are tired they fall asleep. As far as I know they don’t shame themselves for not being able to keep their eyes open or hold their heads up. Now, I know we’re not babies and that as adults the expectations are different…for example, babies are allowed to fall asleep anywhere whereas for adults it’s not okay to fall asleep in the middle of a meeting at work. Or behind the wheel. It’s also generally not socially acceptable to fall asleep mid-conversation or in the arms of someone you don’t know. And if you’re doubling your weight within a matter of months you should probably get that checked out.

Still, I think we can take a cue from babies. I think we can let ourselves rest more easily.

Of course there are times you have to push through and of course there are times when being tired is worth it. I’m not promoting laziness but I am proposing balance. Being alive is awesome. Learning new things, meeting new people and seeing new places? These are awesome things! But being alive can also be tiring whether you are two months old or fifty years old. That’s just the way it is.

So you know what else is awesome? Letting yourself take a break when you’re tired. If you don’t know how to do this take a look at Nora expertly demonstrating how to take a break.

Nora cuddles

Now doesn’t that look like fun?

Your turn. Because you know what else is awesome? You are. And awesome people deserve a break.

Here’s to my village

I last posted around two weeks ago, on December 1, about how I always finish the day by saying tomorrow will be better. Unfortunately, the last two weeks (two months…two years, really) have not been better, and have in fact been more than my poor body can handle. On top of all my underlying health problems that cause incredible fatigue, I’ve gone to a lot of important but tiring appointments, had a lot of blood drawn, spent a lot of days suffering through horrible side effects of antibiotics, and topped it all off with a late night trip to the ER for severe abdominal pain that dissipated after 24 hours as randomly as it appeared. I now feel like a giant jello jiggler.

The good news, however, is that all signs now point to better days ahead. No more antibiotics for now, no more appointments until January, increased calories in my TPN and a temporary hold on tube feeds, and extra fluids for the rest of the week. It won’t be instant, I know that. After years of setting “I will be better by _______” deadlines, and after years of heartbreak every time Christmas, Easter, my birthday, etc. rolled around and I wasn’t better, I’ve stopped doing that. I still set deadlines, but I do so in a much more realistic and flexible way. Case in point: I should be noticing an improvement from all of these changes by the next time I see my GI specialist on January 19, and if I’m not then it’s time to brainstorm some more solutions.

So yeah, the last two weeks have been really tough, but they could have been even worse. “It takes a village to raise a child”…you know that saying? Well, it also takes a village to support someone with a chronic illness. I have always been an independent person and it frustrates me to no end that I can’t do everything for myself by myself right now. Oh believe me I try to more independent than I’m capable of, but that’s how I wind up running out of a store before paying to avoid passing out in the checkout line and lying in the backseat of my car for 45 minutes before I feel steady enough to drive home…a story for another time! As much as I hate relying on other people to do everything for me, it’s better than putting myself in danger so I’m working on just sucking it up and embracing my dependence.

And even though I hate my loss of independence, I’m part of an amazing village! Let me tell you about some of these amazing villagers.

There’s the obvious ones, like my mom, who has driven me all over the place for all sorts of appointments, who has patiently waited with me for appointments that were running late, who has advocated for me during these appointments, and who has gone out of her way to run all sorts of errands for me so that I wouldn’t have to leave the house. And there’s my sister, who offered to come wait with me in the ER the other night so my mom could go home, and who was up at 1am texting me to see how I was doing and making sure everything was okay. And then there’s my brother, who came to the ER at 10:30 at night so my mom could go home, even though he had been up at 4am for work, had only just returned home from two weeks working up north, and had to miss an end of exam celebration with his engineering friends. And there’s my brother-in-law who picked me up in the middle of the day yesterday and drove me back to the hospital for an ultrasound.

Then there are the countless villagers who show their support in other important ways. Like my aunt, who always emails me to say hi and see if I need anything. My best friend who listens to all the TMI details of chronic illness and always helps me find the humour in it all. There’s my old-coworkers-now-friends who continually check in with me to make sure I’m doing okay. There’s my support group of gastroparesis sisters who, no matter how sick they are or how much they are dealing with in their own lives, never fail to send me love and wish me spoons, including one who actually sent me a picture of her family’s antique spoon collection when I really needed the extra energy to get through the day. And my friend in Saskatchewan who sent me a just because care package in the mail. And my elementary school teacher who dropped by last week with flowers for my room. These are just a few examples, but there are countless more that I can’t even begin to list. I have been shown an overwhelming amount of love and support over the last little while. Almost every day, in some form or another, someone lets me know that they are thinking of me and that is a huge part of why I am able to maintain hope and smile through all of the yuck.

My village includes a great team of medical professionals, a team that continues to grow! Like my GI who said I looked exhausted, and the TPN doctor who I had never met that said I looked really unwell. This might seem counter-intuitive to you, but for me, hearing that I looked bad was a huge comfort! It meant that I didn’t have to try and justify how poorly I was feeling. And as opposed to when I hear that I look good, I didn’t have to smile and say thanks, knowing it was a big lie. There’s the internal medicine doctor who spent close to an hour taking my history last week. In the end he couldn’t do much for me, but I felt heard. There’s even the medical imaging receptionist who let me skip the waiting room yesterday and instead go lie down on a stretcher in the hallway outside of ultrasound and wait for my test there.

And there’s you, you reading this right now, because by reading this you are giving me a voice, and a purpose, and you are making me feel less alone.

So here’s to my village. My whole village. My family and my friends, and friends of my family and friends. Fellow spoonies who I’ve never met face to face but who know me inside and out anyway. My health care team that never stops fighting to help me see better days. People I encounter only once but whose kindness leaves a mark, who won’t remember me at the end of the day even though I will remember them. And everyone reading this.

My life is better because of you.

Thank you.