A very exciting thing happened last week – my portable pump came in! It took some trial and error, a few calls and visits to the medical supplier, and the total switch from a closed feeding system to an open feeding system before I could get it going, but the important part is that it is now up and running!
My old pump, the one on loan from Nestle, is not portable and needs to be clamped to an IV pole while it’s running. Thus for the 14 to 15 hours I was hooked up to feeds, I too was tethered to the IV pole. Every night between 6 and 7 pm I would start my feeds and give up my independence. Being stuck upstairs and being attached to the IV pole was very isolating, frustrating and plain old cumbersome.
The other thing about this old pump is that since I was stuck in my bedroom with it, I had to run overnight feeds. At first this seemed like a great solution – feed while I sleep and then be free during the day! In reality, though, there are a couple of reasons why overnight feeds, at least for me, were not all they were cracked up to be. First of all, you are supposed to flush the tube with water every several hours while feeding to prevent formula build-up and clogs. Every night I would wake up once or twice to do this. And it’s not just a simple get up and flush…it’s get up, unplug the pump, push the IV pole to the sink, wait for the warm water, flush the tube, push the pole back, plug in, get back into bed. Secondly, it’s not really natural to eat while you’re sleeping. You know how when you eat too close to going to sleep you have wacky dreams? Maybe this isn’t a real thing, but I remember a Cosby Show episode where Cliff ate a hoagie before going to bed and then had really weird dreams, and I’m pretty sure if it’s on the Cosby Show then it’s a proven, scientific phenomenon. Well, that happened to me! Every night I would have these crazy and vivid dreams, to the point that sometimes I would wake up in the morning feeling like I had barely slept. My other issue with night feeds was a lack of energy. You see, my stomach is still being incredibly stubborn and I’m really struggling to eat much of anything during the day without being terribly symptomatic. Plus, when you have gastroparesis, who knows how long it takes for whatever you’ve eaten to actually get absorbed and be available for energy. So basically, most of my calories were coming in while I was sleeping, and by the time the afternoon rolled around my energy started to fade.
All that considered, we decided to invest in a portable pump. And after reading all that, you can probably imagine why I am so excited that I now have it up and running! This pump has a long battery life so I don’t have to worry about plugging it in while in use and it runs in any orientation so I don’t have to worry about keeping it upright. It’s a bit tedious to get it all set up in the morning, but once I do, I stick the pump and the bag of formula in a customized backpack and off I go. I affectionately refer to my pump and backpack as Dora – yes, this is in direct reference to Dora the Explorer and her backpack song.
I am now that strange girl who carries a backpack everywhere. When I go to fill up my water bottle, the backpack comes with me. When I drive somewhere, the backpack is seat-belted into the passenger seat of my car. Anywhere I go, the library, for a walk, the bank, to the grocery store, to school, to visit friends, the backpack is with me!
Because of this, I’ve been thinking a lot about crosses and burdens. You know the saying, everyone has their cross to bear? Everyone has their burden to carry? Well, I take this to the next level (what can I say…I have always been a bit of an overachiever). Gastroparesis is my burden and I very literally carry it around on my back all day long. I will admit that sometimes this makes me angry. I have a terrible condition and I’ve gone through some terrible times and now I have this terrible feeding tube. Isn’t that enough? Do I have to carry it with me all day long? Do I need to be reminded of it every second of every day?
But every situation has two sides.
Because I carry around that backpack all day, I have a little more energy to go out and do the things I want to do. Because I carry around that backpack all day, I have gained some of my independence back. Because I carry that backpack around all day I am sleeping better. Because of it, I am blessed with glimpses now and again of a ‘normal’ life. Carrying around my burden is what is going to allow me to have a better quality of life.
I think that if we think about it, all of our crosses and all of our burdens actually help us out in some way. Maybe you hate your job, but your job is what is allowing you to go on that vacation you’re holding out for. Maybe you have a loved one with a health crisis, but that crisis is bringing your family together. Maybe you’re the one with the health crisis, but it’s forcing you to finally take some time for yourself. Maybe you’re lonely because your friends are busy or your kids have moved out or your relationship has ended, but now you get to reach out and make connections with new people and you get the opportunity to have your life touched and changed by them.
I have a feeding tube and as much as I hate it (believe me, I hate it), it is keeping me alive! It’s giving me a life. It’s allowing me to enjoy my family and friends and find humour in the messiness of my every day. My illness is a burden, but there is nothing I can do to change it and if I’m willing to carry it on my shoulders all day, to take it with me, that burden becomes a blessing.
So whatever is overwhelming you, whatever has you doubting yourself, whatever is making it hard to smile and face the day, don’t ignore it, don’t fight it, don’t resent it. Try putting it in a backpack and carrying it around on your shoulders with your head held high, instead of dragging it behind you and risking a back injury. You just might find that wearing that backpack lets you go places you couldn’t go before. You just might find yourself going about life a little differently.
I’m making a fashion statement with my backpack.
Make a statement with yours.