When you can’t eat part one: The facts

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.

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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.

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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!

 

 

 

One with the trees

Here we are in a new year and so it’s time for a new One Word!

Last year I started by just picking my one word for one month at a time. Everything about my life felt very up in the air last January so I wasn’t ready to think ahead further than that. As it turned out, though, a few months into the year the word advocate came forward as my focus. While the word advocate can be applied in many different settings, I meant it in a health-centered way. And it worked out well for me! I made a lot of really important health-centered steps forward last year. I got a POTS diagnosis. I finally got my EDS diagnosis. I got a new family doctor. Those were the big ones, but there were a lot of small successes throughout the year, too.

I will never stop needing to be an advocate for myself. That said, I don’t need it to be my only focus right now. This year, I am going to be one with trees. Yup, that’s right, I’m dying my hair green and wearing a tree shaped car air freshener around my neck.

Not quite. I am going to be one with trees though, because my one word for 2016 is Branch.

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And now I am going to make my high school English teachers proud (Hi Miss Triveri!) by walking you through an extended metaphor.

When I got sick I was uprooted. I had been on steady ground, I had been thriving, and then it was as if someone pulled me out of the life I knew and tossed me aside. It didn’t matter how hard I had worked, how many connections I had made or how many goals I had set for myself, all of a sudden I found myself on unfamiliar and unfriendly terrain. I couldn’t thrive there. I lost all of my leaves, on the outside but on the inside, too.

I spent the next couple of years desperately attempting to find my way back to where I had been. I didn’t spend much time trying to figure out this new ground beneath me because why bother putting down roots when I was determined not to be there very long? My eyes remained on my old turf. I enviously watched all those other trees continue to thrive while I, from a distance, continued to shrivel away.

But then something changed. I took a look around me and realized that maybe I could find a way to grow right where I was. In a lot of ways this new terrain was less welcoming, but in some ways it was more forgiving. It wasn’t strictly better or worse, it was just different. It took a lot of hard work, but I was able to establish some roots. That’s what I was doing all last year while advocating for myself, I was putting down roots.

And now? Now I’m ready to branch. Now I’m ready to see how see how far I can reach right from where I am. I don’t know exactly what this will look like yet but I do know that I will be able to weave it into a lot of different areas of my life.

In terms of my health, my diagnoses are my roots. Now that I know what I’m dealing and now that the big things are being treated and managed, my new doctor and I can start to take a look at the little things, the better quality of life things. Now that I have a better understanding of what my limitations are, I’m learning how to be mindful of them instead of doing more harm than good by ignoring them. I’m working with my physiotherapist to improve my strength and stamina in a way that protects my zebra joints.

I also have roots in this blog. I started putting my words out there a little more last year which gave me the chance to connect and form friendships with a lot of really awesome people. I hope to branch out even more in my writing this year.

And perhaps one of the hardest things for me will be to branch out when things are not going well and reach out to other people when I need help. I have roots in the form of incredible people in my life, family and friends who never stop letting me know I am loved, but I tend to hide away when things are tough and wait until I feel in control again before letting them in. I’m going to try to let them see me and support me even when I’m losing leaves.IMG_0971

I’m going to be one with the trees. I’m ready now to figure out how to thrive within this new terrain, not against it. There will still be times when I lose my leaves faster than I can grow new ones and there will still be times when I feel left behind by all the other trees, but I hope to surprise myself by how much I am able to grow.

I’m going to make like a tree and leave now. You’re probably groaning, I’m sorry, but what can I say I’m a sap when it comes to puns. Don’t worry though, I can’t think of any more. I guess I’m stumped.

Okay. NOW I’m done.

Dear new doctor…actually scratch that formal dear business

You can read an updated, more universal version of this piece over at The Mighty.

I read this article written from a doctor’s perspective earlier this week and while none of it was a surprise to read, it really resonated with me. Since having recently learned that my family doctor of 23 years is retiring at the end of this year (with no one to replace her…eek!), I’ve been thinking a lot about the whole dynamic between doctors and chronic illness patients. So, of course, I put those thoughts into words.

Dear new doctor,

…Actually scratch that formal “dear” business. I tend to use a more familiar greeting when writing letters to anyone who is privy to the inner workings of my intestines and my ovaries…because of course I write a lot of letters to people about those very topics and thus have determined that a more familiar greeting is appropriate…

You don’t know me yet, so let me just clarify that I’m kidding. I don’t actually write letters to people about such things.

So anyway!

Hi new family doctor!

I am sincerely pleased to meet you. Even though I’ve seen a lot of doctors before you, I’m excited by the possibility that you might have ideas and options for me that no one has ever mentioned.

I’ve got to say, though, I’m also rather apprehensive.

You’ve probably noticed by now that my chart is fairly…uh…lengthy…and you might be wondering what you are getting yourself into by accepting me as your patient. I’m not the kind of patient that can be easily fixed and I know that can be really disheartening and frustrating. I get disheartened and frustrated, too. Look at that! We have something in common!

Here’s what I want you to know about being my doctor.

I don’t expect you to already know much about my illnesses, and actually it’s very possible that right now I know more about them than you do. Please be okay with that. Consult the internet or talk to other doctors to learn more if you want, but when it comes to understanding how my illnesses affect my life, talk to me. And even if you are already familiar with managing these conditions, don’t forget that my body didn’t read the textbook chapter on “how to have gastroparesis, POTS and EDS” before it decided to get sick so it might not follow all the rules.

Keep in mind that the 10 minutes in which you see me is just a snapshot of my life. You might see me at my best or you might see me at my worst, but most of the time you’ll probably see me somewhere in between. Please don’t make assumptions about how I am doing based on whatever snapshot you happen to capture that day. Just as my frown does not imply the presence of depression or defeat, my smile does not imply the absence of worry or pain. I smile a lot. I laugh a lot. But I still understand my reality, and I need you to understand it, too.

You might be scared of me because I have a chronic illness, but you should know I’m scared of you for the same reason, because I have a chronic illness. I’m scared you won’t trust my instincts and will treat my concerns as overreactions. I’m scared you might confuse not being able to fix me with not being able to help me at all and then give up. I’m scared you will think I’m lazy or just not trying hard enough. You see, I can be as well-informed, empowered and proactive as I want, but I have no power. I can’t prescribe meds, order tests or make referrals. I need you for that. I have the day-to-day-living-in-this-body experience thing going for me, while you have the foundation and education, and you have the years of experience treating other patients. I know that you can see things I can’t because you are not living it day to day, and I respect that. I hope you will try to see things through my eyes, too.

I know that you are human and I promise not to hold that against you. I know you make mistakes and I’m okay with that. Sometimes I’ll catch your oversight, but that doesn’t mean you aren’t doing your job as my doctor, it just means that I’m doing my job as a well-informed patient. I know you won’t always have the answers and I’m okay with that, too. I don’t expect you to know everything, but please be honest with me about it instead of giving me a confusing and round-about answer. I also know that you won’t always be able to help me. Sometimes at the end of an appointment you will feel helpless. That’s okay. The next appointment will be better.

But I’m human, too, and sometimes I get defeated. Because I know that things could be worse, sometimes I forget that I’m allowed to wish things were better. And sometimes I stop fighting for them to be better. I lose hope. I need you to fight for me when that happens. Remind me what determination and perseverance look like.

Please know that I will always appreciate you giving your time to help me. I know it’s your job, but I’m grateful all the same. I see a lot of doctors, but I know that you are the one with the most comprehensive view. You are the one looking at the big picture and you are the one keeping me from falling through the cracks. I know there will be lots of trial and error, confusion, and paperwork…and I’m really sorry about the paperwork…but there will also be successes and milestones. And joy. No matter what is happening, no matter how sick or healthy I am, I promise you there will still be joy.

That doesn’t sound so bad, right?

Oh, and just in case it helps, I also come with a free supply of dishcloths, hats and scarves.