Tag Archives: acceptance

Let’s be more like babies

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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.

A day in the life part one: Feeding Tube 101

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Happy Feeding Tube Awareness Week! The Feeding Tube Awareness Foundation started this awareness week in an effort to eliminate the stigma around feeding tubes and celebrate the lives they make possible. The theme of Feeding Tube Awareness Week this year is “the truth about tube feeding” and the focus for today is education, so in the spirit of it all I’m sharing a little bit more about the medical-y day to day of my life. Today is Feeding Tube 101, and since my life got slightly more complicated when I started TPN in the fall, tomorrow I’ll talk about the rest of it.

Disclaimer, my day to day life is not going to be the same as someone else with a feeding tube. There are hundreds of different reasons why people need tubes, and as such everyone’s day to day will be a little (or a lot) different.

Let’s start with a crash course in feeding tubes. There are many different brands, styles and sizes of tubes. And now a rhyme:

Some tubes are short. Some tubes are long. But all tubes just want to feel like they belong!

But really, there are so many different kinds! Let me decode them for you: G=gastric, or into the stomach; J=jejunal, or into the jejunum which is the second part of the small intestine; N=nasal, through the nose; Fr=French, which is the unit of measurement used to describe feeding tube diameters. G tubes are used when the stomach still functions properly. Depending on why someone has a G tube, they may do bolus feeds, which means a large volume over a short period (much like a regular meal) or continuous feeds, which involves a set rate of formula per hour over many hours. J tubes are used when the stomach function is impaired and the formula needs to be delivered directly into the intestine. J tube feeds must be delivered continuously at a lower rate because while the stomach has a ton of reservoir volume, the small intestine has a much smaller capacity. And to make things even more confusing there are also the hybrid GJ tubes, which have access to both the stomach (G) and the intestine (J) all through the same stoma, or opening, in the stomach. Those are the basics, but tubes can also be differentiated by make, placement and style.

Fun (irrelevant for most people reading this) fact: I have a 16Fr Mic J tube.

Once upon a time, in September and October of 2013, I actually had an NJ tube (nasal-jejunal) which means it went up my nose, down the back of my throat (yes, I could see it when I opened my mouth), down my esophagus, past my stomach, through my duodenum and into my jejunum. Quite the journey really…perhaps I shall write a children’s book about it! Nasal tubes are usually used when tube feeding is temporary or as a trial for tolerance to tube feeding before placing a more permanent one. Here’s what I looked like for 26 terrible days with my NJ tube:

NJ tube collage

I (un)affectionately referred to this tube as Babar. You can see the resemblance, right?

King_Babar

Despite my smile, I really wasn’t lying when I said those were 26 terrible days. I’ll spare you the traumatic details but I ended up having it pulled six days early in the ER because I could not tolerate it any longer. But regardless of how awful that time in my life was, I mostly just shake my head and laugh about it now.

I started with an NJ tube because the hope was that it would just be temporary. I gave it my best effort but my need for nutritional support persisted, which is why I had my J tube surgically placed in January of 2014.

Here’s a picture that shows both my lifelines, my feeding tube and my central line:

Feeding Tube Awareness Week (2)

My feeding tube (the one in my belly…duh) was surgically placed right into my small intestine. It hurt, a lot. The surgeons all said it shouldn’t cause any post-operative pain, but I would like them to plant foreign objects in their abdomens, leave them there, and then get back to me on that. It was a good eight to ten weeks before I was completely pain free, but by that point in time I was well underway in my never-ending battle with granulation tissue, a battle that continues to this day. If you haven’t read my posts from last spring where I’m pretty sure I talk about granulation tissue a lot, it’s basically tissue the body produces to try and heal wounds. In most cases this is a good thing but in the case of having a feeding tube where you need that stoma to stay open, granulation tissue is bad. I have tons of pictures (seriously, I have so many) of my poor stoma overrun with granulation tissue and covered in ugly stains from trying to burn it off with silver nitrate, but don’t worry I won’t share those with you! You can look at these pictures instead!

Tubie on the go collage

Other than feeling some pressure from the balloon if the tube gets snagged, I don’t feel it inside me. I do, however, experience discomfort when I flush larger volumes of water. And if the water is really cold I can feel that, too! There are days when it is very painful and days when I forget it’s even there, and so far I can’t figure out a rhyme or reason for that. Here’s a random tidbit for you…oftentimes stomachs or intestines will try to digest feeding tubes. By this I mean that normal peristalsis is taking place inside the digestive tract and the internal parts of the tubes get pulled along, sucking the tube in tight against the skin. I like to think of it as a game of tug-of-war between my intestines and the outside world. Basically it’s just annoying and vaguely uncomfortable, though sometimes it’s quite painful.

Before I had gastroparesis and before I knew much of anything about feeding tubes, the truth is that I thought they were pretty icky. In my earlier days of gastroparesis when feeding tubes were something only the really severe cases required, I still thought that. And honestly? They’re not exactly glamorous, but having a tube? And using that tube in public? There’s nothing gross or icky about that! Someone tube feeding in public should be seen no differently than someone eating ‘normally’ in public. Flushing water through a tube should be seen no differently than someone taking a drink from a water bottle.

Feeding tubes are not something to be feared. Some people can’t walk and they need a wheelchair. Some people can’t see and they need glasses. Some people can’t eat and they need feeding tubes. It’s as simple as that.

Feeding tubes aren’t the magic solution for everyone, as mine certainly wasn’t for me, but they do keep people alive and they help people thrive. They allow babies to grow into children, they allow children to grow into adults, and they allow adults to keep living. They aren’t contagious or scary. They’re real. They’re just part of real life. And there shouldn’t be shame or embarrassment associated with anything that gives you have a chance at a life.

So Happy Feeding Tube Awareness Week! It’s all about awareness, so please, if you have any feeding tube questions whatsoever, ask away and I’d be happy to answer! And may all the tubies out there, past, present and future, bare your bellies with pride 🙂

FTAW

Happy Spooniversary to me!

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IMG_4825

Before I begin my post I would just like to say to all of you who think I’m a goody two shoes, you should know that I stole all these spoons off of my food trays yesterday (I get clear fluids – so a spoon for jello and a spoon for broth) and hid them in my drawer for the purpose of this picture. And to all of you who now think I’m a pretty bad ass cutlery thief, you should know that I returned all the missing spoons with my breakfast tray this morning.

And I digress…

Today is my five year spooniversary. A spoonie is someone with a chronic illness. I know I’ve mentioned it before, but in case you don’t know what the spoon theory is all about you can click here for more information. (It’s also my little cousin’s 6th birthday today so happy birthday to him!)

October 11, 2009 I woke up with what I thought was just a normal flu, and I have not had a normal or healthy day since. I’ve had good days and stretches, of course, but it’s been five years since I’ve eaten a normal meal, gone a day without nausea, gone a day without medication, and been able to just go throughout my day without having to being conscious of my health.

Last year my spooniversary was a bit of a rough day. It was a Friday, and it also happened to be the Friday of the SFU Science fall convocation, which, had everything gone as planned, would have been my convocation. Instead I was at home with a feeding tube up my nose and down my throat, and stuck in my bedroom while hooked up to 24 hour feeds. I remember thinking next year will be better! Next year on my spooniversary I will be past all this yuck. Next year I will be able to look back and see all the ways my life has improved.

This year I’m in the hospital. And I’m not going to lie to you, it’s been an exceptionally tough week. I have not been feeling well, and I’ve also been dealing with a lot of miscommunication among doctors and other staff. I haven’t felt heard or understood. All in all it’s just been incredibly frustrating, overwhelming and exhausting. It’s ‘next year’ and it’s not exactly better. And I’m not past all this yuck; I am still right in the middle of it. While I am usually full of joy and hope, I have been pretty miserable and I’ve been having a hard time mustering up positive energy.

So instead of dwelling on everything bad that has happened in the last five years, instead of focusing on the nightmare of a year I have had, and instead of thinking about all the ways I’d hoped my life would be different, I’ve decided to celebrate my spooniversary by sharing five good things about my life that have come about because I’ve been sick. One for each year!

1. I have become a really good advocate for myself. I’m a lot better now at asking for what I need and speaking honestly about how I’m feeling. Rather than put on a brave face I know that in order to have a chance at a better quality of life I have to fight for it. It’s a work in progress, but I am slowly figuring out the appropriate balance between my stubborn “I can make it on my own” side and my desperate “this illness is bigger than me” side.

2. I am am much more patient and accepting person. Being a patient requires an incredible amount of patience! Lots of the time your schedule isn’t even your own. You need to see a specialist but you can’t get an appointment for months and months. You show up for an appointment and have to wait two or three hours. You’re in the hospital and you really need to talk to your doctor so you have to stay in your room all day waiting for them to come by. And then there are the 13 hour days in ER. All that waiting is hard, especially when you’re already worn down and sick to begin with, but there is absolutely nothing you can do about it. The nice thing is that all of this waiting has made me a much more patient and accepting person in general.

3. I have met so many wonderful people and had so many meaningful connections with them. I realize that if I was going to school or working full time I would still be meeting a lot of different people and making connections with them, instead, but it’s different. It’s deeper and more honest. There has to be a lot of trust and a lot of respect on the table when you take care of a stranger, or let a stranger take care of you, and that allows for some really honest and real connections to take place.

4. I learned how to crochet! If I hadn’t been taking some time off school and been worried about getting bored, I never would have decided to learn to crochet and now I cannot even imagine what I would do if I didn’t crochet. It’s been so good for my overall well being to have a creative outlet, to have a sense of accomplishment, and to have something that makes me happy but also allows me to make others happy, as well. I’ve had to give up so many things that I loved and that gave me a purpose and an identity, and I’m so grateful that I found crochet to help make up for that loss.

5. Joy. I know I’ve talked about joy before, but I cannot say enough what a difference it can make. Finding joy doesn’t mean you’re avoiding your problems or ignoring a tough reality, it just means that you’re choosing to not let that reality break your spirit and take over your life. There is lot more hardship in my life than there was five years ago, but there is a lot more joy, too.

So there you go. Five good things have that come about from being sick for five years. Honorable mentions: I have acquired a lot of really great pajama pants, and I have a pretty sweet collection of medical supplies now!

And now it’s your turn. After all it is Thanksgiving weekend here in Canada. I’m not asking you to outright be thankful for the hard times you’ve been through or for the struggles you are currently facing, but try and think of just one good thing that has come out of it all, big or small.

And if you’re feeling really crazy share it with me in the comments below.

Happy spooniversary to me and happy Thanksgiving to you 🙂