Six years sick: I would rather have a dragon

Tomorrow is kind of a significant day for me. For one, it’s Thanksgiving (we Canadians know that October is in fact the right month in which to celebrate Thanksgiving!), but it’s also six years to the day since I first got sick. Six years since I entered the world of chronic illness and became a spoonie.

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Two years ago, October 11 was my would-be university convocation day and I was stuck in bed with a tube up my nose and down my throat so that was pretty terrible. Last year on October 11, I was less than two weeks into a five and a half week hospital admission so I was pretty miserable then, too.

And this year? Well, I’m not where I hoped I’d be. This time last year, I expected that things now would be better than they are, but still, things are better now than they were then. That’s super ambiguous, so let me try to clear that up for you. I can summarize where I’m at after being sick for six years in one sentence…

I would rather have a dragon.

The end.

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Not the end.

Okay so several weeks ago I had this text conversation with my friend in Saskatoon, Tabrez.

Tabrez: Would you rather have a dragon or be a dragon?

Me: Hm. Are other people dragons? Could I still talk and effectively communicate with people? Would I still be sick if I were a dragon?

(Apparently I didn’t answer properly…)

Tabrez: Annnndddd this isn’t a game I can play with Catherine. LOL.

Me: Sorrryyy. I pick have a dragon unless it means that I wouldn’t be sick anymore then I would consider being a dragon.

It’s probably not news to you that I like to analyze, and in many cases over-analyze, things, so you’re probably not surprised to know that over the next few days I gave that question a lot of thought. Before I could make my decision there were a lot of logistics to consider!

I wondered whether or not people would still know the dragon was me…if I would keep my memories upon becoming a dragon…if I would turn into a dragon now or if I would have been one my whole life…and of course none of these questions had answers because it was just a random game and reality and logic were never meant to be part of the equation.

But of course I kept thinking about it, and the more I thought about it, the less appealing being a dragon seemed. I figured if I were a dragon I likely would have been one my whole life so I wouldn’t even be me…I’d be a 24 year old dragon who had lived 24 dragon years doing whatever it is that dragons do. But even if that weren’t the case, even if it worked out so that I magically turned into a dragon and was still me just now in dragon form, I figured I probably wouldn’t get to talk to my family and friends anymore. I would maybe be allowed to live in the backyard but definitely wouldn’t be allowed inside the house. And I don’t know too much about dragon anatomy, but I kind of picture dragon arms like T-rex arms and that means that crocheting would probably be out of the question. Being a dragon was not looking like a good time, but I kept coming back to one question.

Would I still be sick?

So really, this is what it came down to: would I give up everything about my life for the chance to not be sick? Put that way? The answer is easy.

No. No, I would not give up everything about my life for the chance to not be sick.

Having a chronic illness is awful. Life with a chronic illness can be terrible, lonely, hopeless, disgusting, traumatic, and so many other negative adjectives. But those adjectives describe my life with an illness.

They do not describe my life. My entire life is not awful. It’s not terrible, lonely, hopeless, disgusting or traumatic. Because my life is more than just my illness. And for all of the awful things I’ve gone through and the terrible moments I face every single day, I’ve also been witness to an incredible amount of goodness. I have encountered so many wonderful people, people who have made me laugh, showed me compassion, and gone out of their way to make my day a little brighter and my life a little easier. I have had people reach out to me and help me in my most vulnerable moments, and I’ve had the opportunity to reach out to other people and be there for them in those moments of their own. That incredible amount of goodness has brought with it the most authentically beautiful side of humanity.

I have been discouraged, demoralized, and pushed aside, but I’ve also been empowered, uplifted and inspired. I’ve been poked, prodded and cut into, but I’ve also been treated with care and concern and have been held together when I’ve otherwise been falling apart. I’ve felt lonely and isolated, but I’ve also never been closer to my loved ones than I am now. I’ve found myself headed in the wrong direction more times than I count, but I’ve always managed to turn myself around again. I have experienced all of this because I’ve been sick, but also because I’m human. As far as I know, dragons don’t have these same experiences.

Being sick has changed me. It’s changed my family and my friendships. It’s changed my values and my perspectives. It’s changed my goals and my interests, my worries and my fears. And all of this change? It’s not all for the worse. Some of it’s for the better.

If I could snap my fingers and not be sick anymore but still be me, absolutely I would do it. The thing is, that’s not realistic.

Why don’t we look at a more realistic situation…the dragon situation, of course. If I had the choice between being a dragon and having a dragon, I wouldn’t want to be a dragon. I would not change everything about my life, everything about me, for the chance to not be sick.

So like I said, I can summarize where I’m at after six years sick in one sentence.

I would rather have a dragon.

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Out came the snowman sweater

This past month has been a stressful medical marathon. Four weeks ago I had my old central line pulled due to an infection. Unfortunately, the new line that was placed was not done so properly so three weeks later it was falling out and I underwent yet another line placement. Add in a whole whack of appointments, ER visits, new medications, unwanted side effects and the usual relentless symptoms day and night, and life has been really wearing on me lately.

I think you know by now that I like to put a positive spin on things. I do my best to have a good sense of humour about everything…and by everything I mean all of the random, weird, gross, random, frustrating and random stuff that comes along with having a chronic illness. Much of the time this sense of humour is not for anyone else’s benefit, but for my own. I laugh things off because if I didn’t I would probably drown. The weight of it all is too much to carry day in and day out and I keep things light so that I can keep my head above water. In reality, though, there are days when I do carry it all. There are days when it all becomes too heavy and too real.

Yesterday was one of those days.

After my line was pulled because of an infection, it never healed properly. Multiple antibiotics later, it was still looking really angry and becoming more and more painful. I was getting really concerned and was ready to call my doctor this morning, when last night I was poking around in the wound and I saw something strange.

It was the cuff. It was a piece of my infected line that had been removed four weeks before. Apparently cuffs are occasionally retained when lines are removed and apparently they often don’t cause any problems. I don’t know what the protocol is when the site is infected, and I don’t know if they’re supposed to inform the patient about any of this…what I do know is that for four weeks I had no idea the cuff was still in there and that it was the reason my infection was getting worse and not better.

It takes a lot to rattle me. I have tubes pulled out of and shoved in to me without any sedation on a fairly regular basis, and I deal with these tubes at home every single day. But pulling out that cuff? That definitely caught me off guard!

To be perfectly honest, it scared me. Most of the time I don’t really dwell on the fact that I have this scary thing in my chest. I don’t focus on the risks associated with it, the extra hassle it adds to my life, and how as much control as I’d like to have, ultimately I have to trust someone else to place it and remove it. I hate that I have not just one, but two tubes in my body that, as the result of an unlucky tug or less than vigilant care, could land me in the emergency room with no notice. I hate that, but that’s overwhelming, so most of the time I just don’t let my head go there.

Sometimes, though, I can’t help it. Sometimes the unpredictability, uncertainty and maintenance piles up and becomes too much. Last night it was too much.

I stood there in the bathroom, tweezers in hand with blood dripping down my chest while I struggled to stay upright as I waited for the nausea meds I’d taken over an hour earlier to kick in, and I wanted to cry. All I could think was, “I don’t want this to be my life. No thank you. I need a break.”

So I took one. Sort of. There is no such thing as a break from chronic illness. When the problem is family, work, school, whatever, you can escape for a while, but when the problem is your body there is no getting away from that. Instead, you have to settle for a sort-of break.

For my sort-of break, I took the night off from TPN. There were still tubes coming out of me, of course, but for the rest of the evening I was able to move around without hauling an eleven pound backpack along with me and I was able to sleep untethered. It was a good start, but when I woke up this morning I was still in need of cheering up. Too sick and tired to go anywhere or do much of anything, I went to my default happy place: Christmas. Out came the snowman sweater…my crochet-embellished-tacky-Christmas sweater.

I’ve been wearing it all day! And yes, it is making me happy.

I know that I’ll bounce back because I always do. I know that soon enough, whether it be a day from now or a week from now, I’ll be able to laugh again at the random, weird, gross, random, frustrating and random things that happen. Everything overwhelming me right now will go back to just being my norm.

In the meantime? I’m just waiting it out in my tacky sweater.

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Most of this post was written on Tuesday and now that it’s Thursday, I can tell you that I am bouncing back. The weight of it all doesn’t seem quite as heavy for now and I’m able to find things funny again. I considered not even posting this now that I’m feeling less overwhelmed, but the thing is, all of that exhaustion, fear and distress are every bit as real and present in my life as the silliness, the humour and the acceptance, and I think it’s important to share that.

I also know without a doubt that I am not the only one feeling overwhelmed by life right now, so I just want you to know that you’re not alone in that. I want you to know that it’s okay to need a break and it’s okay to take one.

I also want you to know that it’s okay to wear a snowman sweater when it’s still summer. Now, I can’t imagine why you wouldn’t have your own snowman sweater, but just in case you don’t, here’s some winter whimsy to tide you over until you get your own!

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You’re doing a good job

I’ve written a few pieces for The Mighty lately, a website aimed towards people touched by illness and disability, however a lot of their stories are great reads for any audience. This piece went up yesterday and while I wrote it with readers of The Mighty in mind, I’m sharing it here, too, because everyone could use a little encouragement from time to time! So here it is…

My doctor sat at his desk facing his computer as he read through my chart and got updated on the various specialists I’d seen and the tests I’d had done since my last appointment with him.

He turned around and said, “So pretty much you’ve become a professional patient.”

It’s true. I’ve seen several new specialists lately and am waiting to see a few more. This is a good thing, because it means that after years of trying to politely convince my doctors that there are other things going on, I’m finally getting somewhere. I don’t yet know exactly where that somewhere is, but I’m happy to be on my way all the same and I’m thankful for the understanding and committed doctors who are helping me get there.

But it’s still hard. I’m tired of waiting months for appointments to come up. I’m tired of playing trial and error with new medications. I’m tired of day in and day out just not feeling well. I expressed this frustration to my doctor although I knew there was nothing he could do about it. What he said, however, actually did help.

He said, “I know. But you’re doing a good job and I think you’re handling everything really well.”

It was the perfect thing to say. There was no pressure that I put on a brave face. There was no expectation that I be upbeat and optimistic all the time. There was no dismissal with false hope or empty consolation.

Instead, there was awareness of the “chronic” part of chronic illness. There was permission to be realistic. There was understanding that I was weary and there was validation that even though sometimes it seemed as if I was stuck in one place, weighted down by my illness, I was actually still moving forward.

And because of all that I also felt encouraged. I was doing a good job. I could keep doing that.

It was exactly what I needed to hear and I can’t help but think that maybe you need to hear it, too.

Thumbs up for doing a good job!

So I want to tell you that you’re doing a good job.

Maybe, like me, you are facing a chronic illness or disability. When you feel like you’re running around in circles searching for a diagnosis, you are advocating for yourself. When you struggle through difficult treatments and procedures, you are giving yourself a chance at a better future. And when you find yourself facing a feeding tube, a wheelchair or any other medical device, you are working within your limitations to be as well as possible and live a life as full as possible. You’re doing a good job.

Maybe you love for and care for someone with a chronic illness or disability. When you are breaking down the walls of your comfort zone in order to learn to care for your loved one, you are working to accept your new normal. When you are putting in hours of planning and preparation to help your loved one carry on with life as normally as possible, you are proving that a challenging life can still be a meaningful one. When you set aside your exhaustion, pain and fear to help your loved one through those feelings of their own, you are teaching them how to be resilient. You’re doing a good job.

We’ve all got something. It doesn’t even have to be illness or disability. We all have things in our lives that are hard.

Sometimes we get defeated. Sometimes we are angry at our circumstances and feel sorry for ourselves. Sometimes we compare ourselves to others and get jealous of those who appear to have it easier. And that’s all okay, because other times our spirits triumph. Other times we choose to laugh instead of cry and choose to be grateful for what we do have instead of bitter about what we’ve lost.  Other times we reach out and take everything we’ve learned through our struggles to help someone else face their own.

We don’t have it all together all the time. We’re not supposed to. But we do what we can. We do our best.

So don’t be afraid to give yourself some credit and acknowledge your own strength. Don’t be afraid to give yourself the affirmation that you need. Whether you are thriving or simply just surviving, you are doing your best.

And you are doing a good job.

Seriously, you've got this!