1, 2, cha cha cha

You know what they say about progress? Two steps forward, one step back? Well, lately I’ve been feeling more along the lines of one step forward, one step back, or maybe even two steps back.

Basically, I just haven’t been feeling very well. It could be school or the warm weather or just an angry stomach. I don’t know exactly why I haven’t been feeling well, I just know that I haven’t. I’ve been tolerating my feeds less and less which means that I’ve had to turn down my rate or take a break during the day or unhook early, and while that might not seem like a big deal, the calories lost really add up! Combine that with my abysmal oral intake and I just have not been getting the nutrition I need. And I can feel it. I can feel it in my near constant lightheadedness. I can feel it in my whole body fatigue. I can feel it in my general “off” feeling.

So yesterday I put pen to paper with the help of my calculator and I figured out a new feeding schedule (and yes, I realize this sounds like something you do with a newborn). Taking into consideration rate and symptoms and sleeping and all of that, I’ve figured out that I need to run my feeds for 20 hours a day. 20 hours!!

One step forward…and one step back. Although let’s be honest, this feels like a lot more than one step back. Perhaps 20 steps back…This reminded me of a quote that gets thrown around a lot in the spoonie world. (Don’t know what a spoonie is? Read about it here)

“Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s a cha-cha.”
~ Robert Brault

Well, I have always wanted to learn how to ballroom dance. Very funny universe, very funny – this is not exactly what I had in mind!

Side note: I just spent the last 20 minutes watching So You Think You Can Dance cha cha’s on YouTube. This post is turning out to be a much better study distraction than I originally anticipated!

Obviously there are a few key differences between living with a chronic illness and being an incredible cha cha dancer. I mean for one, I would definitely not be okay with wearing those teeny tiny costumes. And all those lifts are not conducive to feeding tubes and backpacks – that’s just a disaster and an ER visit waiting to happen. I also don’t really like wearing heels. And all that spinning around would probably make me really nauseous.

All that aside, however, if you actually watch a cha cha you will see that the dancers are not stuck in one spot. They eventually dance all around the stage and even if they end up where they started, at least they had some fun dancing in the meantime. Maybe playing with my feeding schedule is going to get me nowhere and I’m going to end up exactly where I started, perhaps even worse for wear, but at least I’m doing something! At least I’m trying. If this doesn’t work then I’ll just have to learn a new cha cha step, put on a new song, and keep dancing.

Now I know without a doubt that I am not the only one out there struggling right now. It doesn’t even matter what your struggle is, everyone is going through something. All of us, in at least one area of our lives, feel like we are either going nowhere or going backwards.

If you want, you can kick off your shoes, stop the music, and stubbornly sit down in the middle of the stage.

Or you can come cha cha with me!

Don’t worry, I have no clue what I’m doing, either.

But practice makes perfect, right?

Lost and Found

P.S. (in this case meaning pre-script…is that a thing? If not, it should be) I’m writing this in the middle of a bad bout of nausea, so I’m not blinded by a symptom-free day or anything like that. I really do mean what I’m saying.

I don’t know exactly when it happened, but somewhere along the way I lost some perspective.

It’s hard when I still feel nauseous every day even though I have this feeding tube. And it’s hard when I’m fighting a painful infection around that same tube. Feeling left out doesn’t help either, which is how I felt when, for the first time in 19 years, I wasn’t part of my studio’s year end dance recital, and when my Facebook feed was flooded with so many peers and classmates graduating from university with me wanting so badly to be among them. It’s hard to accept the way this disease has changed everything. And It’s hard not to feel like this thing that’s keeping me alive is simultaneously ruining my life.

All of that is hard, which makes losing perspective easy.

So time to try and find that missing perspective…

I looked in the fridge, the microwave and under the kitchen sink,

I looked in my closet, on my bookshelf, in every place I could think!

I searched under my bed and even in the trunk of my car,

I looked high and low, then I looked near and far.

Not actually, but nothing says procrastination from schoolwork like a silly rhyme. The good news, however, is that I found my missing perspective!

How? A friend of mine is facing the decision of whether or not it’s time for a feeding tube (thank you to the internet for allowing me to meet people all over the world who are struggling with the same diagnosis, or different diagnoses but the same issues, as me). I remember making that decision not too long ago, and I remember the constant turmoil and self-doubt that accompanied it, so I did my best to answer some of her questions and show her a different side to all the horror stories the internet holds. It was in doing so that I looked back on the last six months and lo and behold, I found that missing perspective!

Before I got this tube, I couldn’t even stand long enough to have a shower without nearly passing out. I ran out of breath walking up the stairs. Talking on the phone for five minutes exhausted me. I didn’t make plans and I barely left my house. I tortured myself on a daily basis trying to eat and I was under constant pressure to get enough calories.

Then when I first got this tube, I was in constant pain. I remember a little while after surgery saying that I hadn’t had a pain free day in eight weeks. I wished every single day for my tube to come out because I hated what my life had become. I desperately tried to cover it up with long, baggy clothing so that no one would know it was there. I spent over an hour a day on tube maintenance. And I still didn’t make plans because I was too overwhelmed trying to adjust to this new life.

But you know what? My life isn’t like that anymore. I regularly go for hour long walks. That constant pressure is gone. I feed anywhere and everywhere thanks to my back pack and I don’t care who sees. I’m thankful every single day that I have this tube to keep me alive. I’ve got my routine down to a science so tube maintenance takes far less time and causes far less stress. And the biggest change? I’m not afraid to make plans. Sure, there is always the stipulation that if I’m having a rough day I might have to cancel, and there is still a recovery period associated with following through on these plans, but that doesn’t matter because the thing is, I’m making them. I’m dipping my toes back into the real world.

It’s so easy to get bogged down by the day to day aspects of chronic illness and life as a tubie. And because I’m the one living it day in and day out, I am more often aware of all the hassles that come along with this new life (trust me, the hassles are many) than I am of all the opportunities that it opens up for me.

When I found that perspective, though, the bigger picture came into view. I have come so far in the last six months. No, I’m not getting my degree yet, and no, I’m not teaching dance again, but my identity has become so much more than that. Because I found that perspective, I was able to watch my best friend of 21 years graduate yesterday with nothing but happiness for her, knowing that my time will come. Because I found that perspective, I am more accepting of my limitations, working within them instead of succumbing to them.

Even though I may never be the picture of perfect health, and even though I’m sure to face many more set-backs and health hiccups in my future, I’ll never stop learning from it and I do believe I’ll be a better person for it.

So thank you, Leah, for reminding me that the bad and the ugly are accompanied by the good. Thank you for allowing me to see how my life has changed. I was looking at the ways it had changed for the worse, but now I can see the ways it has changed for the better, too.

What about you? What’s getting you down these days? If you’ve lost your perspective like I had, try and find it in the bigger picture.

I hope you find it. And I hope you realize what I did:

Life is good.

Grad 2


Let’s talk about the weather

Let’s talk about the weather!

I know, I know – the weather is that cliched boring topic that comes up when a conversation has reached a dead end. Other times it is a useful topic to divert to when attempting to avoid awkward subject matter. When you have nothing interesting to share about your own life, you can always comment on the weather. If you are having a hard time finding something in common with someone, why not talk about the common weather you are experiencing? Talking about the weather is safe. Unlike a pointless conversation about weather, I actually have a point here!

Before I continue, I would just like to note that as a topic of conversation, I think weather has a worse reputation than it deserves and I am always happy to discuss the sun or, as is more common on the west coast, the various forms of water falling from the sky.

Moving on…

So it’s spring! Here in Port Moody it happens to be a very spring-worthy day with blue sky, sunshine and a gentle breeze. Ideally, the start of spring brings days of nicer weather, warmer temperatures, longer hours of daylight, new growth, and the anticipation of summer. After a long, cold winter, it’s a welcome change.

This year, I found the first day of spring rather symbolic of my life right now. The last few years have been hard, but the past fall and winter were particularly challenging. The miserable weather was right in line with my miserable mood. I couldn’t go to school, I couldn’t teach dance and I could barely leave my bed. I lived appointment to appointment, procedure to procedure. And now? Things are starting to change! Slowly but surely, I am getting stronger and healthier. I have more energy and more brain power. The brain power thing is quite exciting! When I park my car, I can actually remember where I parked it without having to search the whole parking lot. I can actually follow conversations without tuning out after a few minutes due to mental exhaustion. I can read a book that requires some actual interpretation, as opposed to books where I know how it will end within the first few pages.

All of this is exciting! As things are brightening up outside, my health is brightening up, too.

But it’s also frustrating. Now that I am starting to feel like a human being again, I don’t want to still deal with a chronic illness. In the next 8 days I have a doctor’s appointment, a home health appointment and a tube change. My body has been so de-conditioned that I am left with aching joints at the end of the day. My days are scheduled around taking medications, flushing my tube, and hooking up to feeds. My granulation tissue is a constant problem, my feeding pump alarms almost nightly, and I feel like I am constantly fixing/adjusting/replacing my tube’s dressing. (Despite how it sounds, by ‘tube’s dressing’ I am referring to tape, gauze and the works, not a selection of miniature outfits to dress my tube in every day. If that were the case, though, today would be day for purple polka-dots!)

Essentially, I would like to just be all better. I would like to skip all this in-between business and skip the daily maintenance that comes with having a chronic condition.

When I stop to think about it, though, that’s not what spring is all about. Spring actually requires a lot of diligence and hard work. Students are preparing for finals and teachers are revving up to finish the year. Vacations are in the tedious stages of planning. Gardens need weeding, grass needs aerating, and bulbs need planting. Plus we’re all familiar with the term ‘spring cleaning’ and seeing as how it often gets post-poned into summer, fall, or perhaps even until the following spring, I think we all know that it’s not an exciting event (confession: I love spring cleaning).

But the promise of summer keeps us going! The seasons don’t jump from winter to summer. We don’t get to enjoy evenings on the deck, picnics on the beach and gardens full of flowers without putting in a little extra work during spring.

Nothing in life comes without a little work first. My brother is off to South America in May, but not before he finishes his degree in civil engineering in April. My sister and brother-in-law are off to Mauritius in August for their honeymoon, but not before they spent the first year of their marriage saving up. ‘Spring’ is hard work. Depending on the challenge or the goal, it might last a few weeks or it might last a few years.

And so it is with my health. I can’t just go from sick to healthy without putting in the work. My last winter lasted several years so I can’t say how long it will be until my summer comes around. I still have hope, though. Hope is what keeps me going. Hope is what holds winter back from settling in again. Spring is hard work, but summer is worth it!

And I have no doubt that health is worth it, too! I also have no doubt that I am not the only one struggling right now with a health issue, whether it be a chronic illness, chronic pain, a mental health struggle, sticking to an exercise regime, eating better, adjusting to a new disability, managing stress…whatever it may be. Wherever you are and whatever is going on in your life, I hope you’ll join me in remembering the promise of summer, the promise of better days ahead.

It’s a sunny day and a great day to take a step, just one step, towards that warmer weather. So, I’m going to go flush my tube and put silver nitrate on my granulation tissue.

Your turn.