Just another night at the circus

Good news – I’ve been discharged from the hospital. Bad news – I’ve been shipped off to the circus.

Reality – I’m still in the hospital, but the hospital is basically a mini-circus. At least on this particular medical ward.

I was going to read for a while before going to bed but the old lady next to me is having a hard time settling down and won’t stop talking to her stuffed monkey Josephine while the lights are on (no, I’m not making this up) so I’ve shut my light off. Instead, I thought I would take this opportunity to share some anecdotes about some of my many roommates. I’ve shared this four bed room with eleven different patients so far. Let me introduce you to some of the most memorable ones.

When I got here there was a 96 year old woman in the corner opposite me. Unlike most of the others, she actually was able to get up and use the bathroom, but she needed her walker and a nurse’s assistance to get there. She also had an incredibly small bladder. She would ring her call bell very frequently for help but instead of waiting for someone to come on the intercom to see what she needed, she would just start yelling “bathroom! bathroom!” One busy night with a frazzled nurse this poor old woman was actually forgotten about in the bathroom for at least 20 minutes, but she was very good-natured about it all. She was very with it and we had some good little chats. Quite an impressive lady!

The man who was next to me when I first got here also lives in Port Moody! He’s lived there for 38 years which has my 22 years of Port Moody residency beat. Once he realized that we lived in the same city he liked to remind me about it and tell me how his daughter went to Port Moody Secondary, but he could never quite understand that I myself didn’t go there. He was also the first person I ever met in person who, like me, has a feeding tube! Different reasons, different tubes…and slightly different ages (50ish years, give or take), but I’d say a kindred spirit nonetheless.

Over the weekend an elderly man with dementia and a whole load of chronic health problems was brought up to the bed across from me. He didn’t speak much English but he yelled a lot in Farsi. On Sunday morning he tried to climb out of bed twice (he cannot stand up, by the way) and after I called the nurse for the second time to stop him she got help from another nurse and they sat him up in a wheelchair and belted him in. He spent the next half hour trying to figure out how to take the belt off, how to pull his IV out and how to take off his hospital bracelet. When he was unsuccessful at these ventures he reached down and pulled his socks off. Energized from that great triumph he managed to strip down and pee all over the floor (quite impressive considering he was diapered and sitting in a wheelchair the whole time). I’m not sure I’ve ever seen someone look so proud of himself! I waved down a male nurse in the hallway to come deal with the situation, except once he was cleaned up and re-gowned, he did it again. And again (the woman next to me responded to this by saying in a dreamy voice “men are amazing creatures”). Then he was moved into a room with a sitter.

The bed next to me was occupied from Friday night to this afternoon by a woman with schizophrenia who had overdosed on lithium. She spent most of her time sleeping or just sitting on the edge of her bed, but then out of nowhere she would start muttering or yelling rather hostile, and often incomprehensible, things. She also rarely used her call bell and instead took to screaming “Nurse! Nurse! Nurse!” until someone showed up (which really means until I rang my call bell and got someone to come by). As the days went on she got more and more agitated and today she refused to let the nurse give her meds, help her wash up or change the bandages on her knees. She was yelling and accusing the nurse of trying to poison her and talking to her family and turning them against her. Then about an hour later a really cool thing happened and I’m so glad I heard it. The woman called the nurse back in and apologized for losing her temper. Pretty classy, and a beautiful reminder of the potential for good in all people, even those who are more challenging to deal with due to mental illness. She has since been transferred to psych where I truly hope she can get the help and care she needs.

And that brings us to the teeny tiny old woman who is now in the bed next to me with her stuffed monkey named Josephine that that she carries with her everywhere, even to the bathroom. Her and Josephine have very in depth and confusing conversations (partly because some of them are in French, and partly because a lot of what she says just doesn’t make sense). She crawled into bed and fell right asleep around 8 or 8:30. That was easy. Around 9:00 she woke back up and tried to get out of bed which set off her bed alarm and a stream of expletives from her mouth. I rang my call bell and it took three nurses and at least half an hour to get her back into bed, and after quite the production they also managed to get her take a sleeping pill. But back into bed does not mean quiet. This lady and Josephine were very chatty tonight! After a few comments about lights being on, I turned mine off in hopes of settling her down. Thankfully both the lady and the monkey have been quiet for quite some time now. To be honest I am quite intrigued to see how this will all play out tomorrow. I think Josephine and I might become good friends.

Although not a roommate of mine, I would like to give special mention to the man down the hall who has managed to escape three or four times in order to head down to the lobby to buy scratch and win tickets. I’m not quite sure why it wasn’t working before, but they finally got it set up so his bracelet sets off an alarm and locks the ward doors. I would also like to give special mention to this man’s rather genius move today of parking himself close enough to the doors to lock them so that no one was able to get in or out. If he’s not allowed to leave, then golly no one should be allowed to. Clever.

Summary: I ring my call bell a lot, but most of the time I ring it because patients are escaping, bed alarms are going off or IV pumps are alarming (sub summary: old people sleep through everything).

Summary number two: it takes all kinds of people to make the world go round!

A different kind of fix

I’ll be perfectly honest here and say that I haven’t been doing that well the last two months. Almost everything I eat is making me nauseous, and it’s not like certain foods are safe and certain times of the day are safe, it’s all just very spontaneous and unpredictable. Unfortunately, my tube feeds are now also making me nauseous. It’s gotten to the point that I pretty much feel sick all day long and while medications can help to take the edge off, it never really goes away. I even switched back to night feeds for a while to try and help with the nausea in the day, except that then in addition to feeling sick all day, I also felt sick all night and I couldn’t sleep. Oh, and just to add to the fun, my tube feeds are causing some serious bloating. I’m talking my-waist-expands-a-good-three-to-four-inches-during-the-day bloating. All I can say is thank goodness I have already discovered maternity jeans!

So I’ve been rather discouraged. Everyone who sees me gives me a big smile and tells me how healthy I look. They are genuinely happy for me that I’m doing better. I want to be happy with them so I smile back while the voice in my head says “but I don’t feel well…I just want to feel better!”

In the past week I had appointments with all three of my local doctors so I was determined to get some answers. First up was my surgeon. My day to day symptoms aren’t his area of concern, but he looked at my stoma and gave me the thumbs up. Things look good, and the persistent granulation tissue that has morphed into a beautiful (not) hypertrophic scar can just hang out as it would be more trouble than it’s worth to get rid of.

Next up was my family doctor. She was sympathetic to my plight and she told me that she wished she had the magic solution for me, but unfortunately she didn’t. She did, however, order some blood work which revealed my anemia. That explains my lack of energy and is a nice, easy fix.

Last but not least was my gastroenterologist. I was ready for answers and I was insistent that I was not going to leave the appointment without a solution or a plan. After we spent several minutes chatting about random things, including fanny packs and hipsters (because obviously both are relevant to digestion), he told me that I looked a lot better. My face fell, I glared at him and I said “but I don’t feel well.” You know what he said next?

I know.

Two words and I already felt better. He then proceeded to explain new things about my disease he had learned at a conference that validated all of my symptoms. He told me that he really understood how and why I was feeling so terrible all the time. And then he told me about new research that was underway and gave me hope for the future.

Did I leave the appointment with the solution or plan that I was so adamant to get? No. Sadly he had no easy fix for me. But he validated my struggle, and that was a fix in its own way.

Well then I got to thinking about life in general. It’s human nature to try and fix things; we like to be useful and helpful. When someone comes to us with a problem we often jump into problem-solving mode and start offering solutions…”have you tried…?” and other such suggestions. And when we can’t think of a solution we turn to looking on the bright side. We start saying things like “well at least…” and “just be thankful that…” and other platitudes that aren’t necessarily helpful.

We’ve all been there, on both sides of the situation. We’ve all been the ones feeling helpless that we can’t solve a friend’s problem so instead we try to make them feel better, or at least make ourselves feel better by offering something. And we’ve all been the ones with the problem feeling a little disappointed. Instead of being heard and understood we end up nodding and agreeing that yes, I should just be thankful for so and so, or at least [insert worse case scenario] didn’t happen. I don’t know about you, but I often end up feeling a little guilty that I’m upset, discouraged, frustrated, sad, whatever, when I should just focus on the positive. The thing is though, I don’t walk away feeling happy or positive. I walk away feeling discouraged and a little isolated because all I wanted was to be heard.

So what if we just stop trying to fix each other?

Obviously there are exceptions to every situation. There are times when it’s appropriate to snap someone out of their Negative Nelly mindset or to help them brainstorm practical solutions, but I think we know when those times are.

I’m talking about the rest of the time. What if instead of trying to fix each other we just listened to each other? What if we just validated each other’s struggles?

Maybe in order to help someone else we need to allow ourselves to feel helpless.

It’s a different kind of fix.

At first it doesn’t seem productive, and we probably won’t feel very helpful. But it’s really not about us. When someone comes to us with a problem, it’s about them. When we’re the ones with the problems, we’re the ones who want to feel better, so when someone comes to us with a problem, they’re the ones who deserve to feel better. That’s what supporting people is all about – taking on a little of their burdens in order to make their load a little lighter. And it won’t be long before someone else comes along and takes on part of our burdens to lighten our load. That’s what happens in a family, in a group of friends, in a community, we just keep sharing our loads. And it all balances out in the end. Plus it’s not all bad, we get to share our joys, too.

So what if we just stop trying to fix each other?

It’s a different kind of fix, but I really think it might work.

 

 

Embracing what is

Last time I posted I talked about learning curves. Getting a feeding tube comes with a huge learning curve. Between my nasal tube last year and my surgical tube earlier this year, and between hospital nurses, nurse educators, home health nurses, dietitians and my medical supply guy, I was given a lot of information! Yet even with all that information, I still went through two months of nothing but trial and error. And now? Well, I’m still figuring out how to make this work for me and I’m continuously learning what works and what doesn’t work.

One thing that no one gave me any information about, however, was wardrobe. Now I know this might seem a little bit futile – I mean after all I have a feeding tube, so clearly I have some bigger issues at hand than my wardrobe – but it is actually a huge adjustment. Part of getting healthier is slowly getting up, out and about, and I don’t want to wear pajamas all day every day anymore. You’ve probably never thought about it because you’ve never had a reason to (I sure hadn’t considered it before all this) but the average wardrobe is not really feeding tube friendly.

My tube, especially this new tube, is not at all discreet. Because of the design of it with a balloon holding it in right under my skin, it sticks straight out from my abdomen. I can’t tape it down to hide it without causing discomfort and pain, encouraging granulation tissue, and potentially cutting off circulation to my intestines. There is also the end of the tube that needs to be secured in some way. Tape is out because I would have to remove the tape every two hours to flush the line and my skin would start a revolution. Basically this leaves me to tuck the end of my tube into the waistband of my pants. Speaking of waistbands, any pants that fit snugly around my waist cause a lot of discomfort when I try and move because any pressure on my abdomen shifts the tube around. And oh yeah, the more the tube shifts, the more granulation you get.

Here’s a visual for you of this oh-so-indiscreet tube of mine:

photo-6 So, as you can see, this tube can make finding clothes a challenge. Think about what you are wearing right now, or what you wore yesterday, or what you plan to wear tomorrow – is it tube friendly? Would your shirt lie nice and flat? Would your pants still be comfortable? Could you tuck your shirt in without looking like you have some strange growth? Would you be able to easily access your tube to flush it?

I’m not saying this to get sympathy. I’m just trying to explain the thoughts that ran through my head when I got this tube, opened up my closet, and realized I had nothing to wear.

At first I was beyond frustrated. It wasn’t just that I had nothing to wear, it was that this tube had changed so many things about my ‘normal’ and I was already making so many adjustments, I just wanted one thing to be easy. As I thought about it, though, I realized I had two options. I could sulk about how I had nothing to wear and stick to sweats and Lululemon pants all the time but that didn’t sound very productive. My other option was to accept that this was just another thing I had to adjust to and find a way to make it work.

Well find a way I did and here is my secret: I wear maternity jeans. The jeans with the giant elastic panel? Yup, those ones, those are the ones I’m talking about. In fact, the pants in that picture right there with that navy blue waist? Those are them!

And here’s the thing – they fit great, they are incredibly comfortable, and they perfectly accommodate my tube.  Am I crazy about the fact that I’m only 22, not at all pregnant, and wearing maternity jeans? No, no I’m not. Did I feel a pang of sadness when the mother-to-be in front of me at checkout turned around and shared with me how she hasn’t been able to fit into any of her clothes lately and is happy to have some new options? Yes, yes I did. Her clothes don’t fit because she’s actually pregnant, because she’s preparing to welcome a new baby into her family. My clothes don’t fit because I have a chronic illness that required me to get a feeding tube. It’s not exactly the same thing.

In the end, though, I’m not sad. In the end, I embrace it! I am taking a not-so-fun reality and making it work for me. I’m not giving up. I realize that there is nothing I can do right now to change the fact that I need this tube, so I am accepting it and moving on with my life. And I’m proud of that.

You don’t have to have a feeding tube or some other obtrusive medical device to understand where I am coming from. Everyone faces realities that they don’t like. Maybe you don’t like your cankles, or maybe you wish you had less wrinkles. Maybe you wish you had more money. Maybe you wish your family member would just listen to you already. We all face realities that we can’t change. Now of course there are things in our lives we don’t like that we do have the power to change – I’m not talking about those. About those, I say if you can do something to change it, then do. But about the things that we can’t change, we have two choices: shut down or move on. Sometimes we just have to give in to the way things are if we ever have hope of moving on. And giving in is not giving up! Giving in is acknowledging that we are human, that we are flawed, that life can be challenging. Giving in is freeing. Fighting reality is exhausting, and as Byron Katie says, “When I argue with reality, I lose – but only 100% of the time.”

When we give in, we allow ourselves to accept. And when we accept, we allow ourselves to embrace. And when we embrace, we allow ourselves to celebrate.

We could dwell on the realities that we don’t like, or we could embrace the possibilities out there and move on, rise above, create new solutions and become better people for it. And that is something to celebrate.

I don’t know about you, but celebrating sounds like a lot more fun to me!