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.

SpoonCollage

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.

Spoon Collage 2

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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Why I’m celebrating my incurable diagnosis

“Are you diabetic?”

I’ve heard it before. I’ve been hearing it for years, in fact, but with the recent ER visits for an infection around my central line and the days of IV antibiotics and re-assessment that followed, I heard it five times from five separate doctors all within one week. Gastroparesis and autonomic dysfunction are common co-conditions in diabetes so after all these years I now fully expect to be asked this question.

During that same week, a triage nurse commented on how I was so young to have so many random health problems. A nurse in interventional radiology asked me what the plan was for getting me better and back to normal life. And an ER nurse’s eyes welled up with tears after she took my lengthy medical history and then realized we were the same age.

Again, these are all really common and understandable responses. Health care workers are more accustomed to seeing complicated chronic conditions in older patients, not patients in their 20’s, like me. It probably doesn’t help that despite having recently turned 24, I’m often mistaken to be 15 or 16 years old!

All of these reactions are usually followed up the same way. Why? Why do you have this? Why is this happening to you? Why aren’t you getting better? Why isn’t your age allowing you to just bounce back?

For six years I haven’t had an answer, but now I have one.

EDS (8)

I have Ehlers-Danlos Syndrome. I have an incurable connective tissue disorder that affects my joints, blood vessels and organs. I’m not going to magically get better and it’s possible that things might get worse.

And I’m celebrating.

To be clear, I’m not celebrating the incurable-not-getting-better-but-maybe-getting-worse part. That part is as overwhelming and frustrating as it sounds.

But that part really isn’t anything new. Sure, we didn’t know what was causing all of my problems but it was well established that my illnesses were chronic. It was understood that there would be ups and downs, highs and lows, but that I would be tackling health struggles for the rest of my life. And that hasn’t changed.

Here’s what has changed.

Next time I meet a new doctor and they ask me why all of this is happening to me, I will have an answer. Next time I wonder if my illness is something I brought upon myself and could have prevented, I will know that’s not the case. And next time I experience some bizarre new symptom and I want to pull my hair out wondering why my body is so strange, I’ll know that strange is just par for the course and that it’s not just all in my head.

When I first learned about Ehlers-Danlos Syndrome over two years ago I immediately thought, “I think I have that.” However, as many chronic illness patients know, most doctors don’t really appreciate it when we diagnose ourselves and then ask for the tests or referrals to confirm it. It took a lot of casual mentions, strategic asking of opinions, polite acceptance of brush offs, insistent re-mentions and then, as always, months and months of waiting. Now that I have a diagnosis, I also have a reminder to trust my instincts and never stop advocating for myself.

This diagnosis brings a lot of peace of mind and ah-ha moments. Yes, now I know why I can’t eat and why my body sometimes forgets how to stand up, but there are so many other things about my life that all of a sudden make sense! Now I know why my dance teachers used to get after me for having ugly elbows, loosey-goosey shoulders, and knees and ankles that didn’t line up properly. Now I know why I hold my pens and pencils differently. And now I know why my family used to give me strange looks when I couldn’t finish my steak because chewing was just too exhausting and painful (apparently not everyone feels like their jaw is going to fall off while eating steak?). There is a long list of little things that all of a sudden make a lot of sense since this very important piece of the puzzle has been added.

So no, I’m not happy about all of the struggles future me has to deal with, but I am happy to have a better understanding of all of the struggles I’ve already faced.

I’m happy to have some answers.

I feel heard and I feel validated.

I feel empowered. And that is why I am celebrating. Ugly elbows and all!

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Have wheels will travel

Sometimes I use a wheelchair. See?

Have wheels will travel

I’m just kidding. Well, I’m just kidding about the motorcycle. Sometimes I really do use a wheelchair. And sometimes I make my mom haul that wheelchair on to the back deck for a photo opportunity. See?

Have wheels will travel...for real

I have dysautonomia and because of this, oftentimes I cannot stand up or walk around for very long without an inappropriately fast heart rate, an abnormal blood pressure and a whole host of very unpleasant symptoms.

If you’re confused or curious and want to know a little bit more about dysautonomia then I wrote this appendix/addendum/supplement/whatever for you. And if you’re satisfied with that brief description, great. Carry on reading.

One of the challenges of dysautonomia is that I never know when this barrage of unpleasant symptoms is going to hit me. I might think I’m okay but then a few minutes later find myself in quite the pickle…like the time I was trying to buy yarn and ended up having to leave the store empty-handed because I couldn’t stand in line and then I had to hang out in my car with my feet up on the dashboard for a while until I felt steady enough to drive home…or the time I had to crouch down to the floor of the library and pretended to be really enthralled by the books on the bottom shelf so that people wouldn’t think I was awkwardly waiting to start a game of leap frog.

As you can probably imagine, this can make going out in the real world and doing normal things like standing and walking very difficult.

So, sometimes I use a wheelchair.

After I was discharged from the hospital in November, except for going to appointments I really didn’t leave the house. I couldn’t leave the house. By March it was clear that things weren’t going to magically get better right away so I asked my family doctor to write me a referral to borrow a wheelchair from the Red Cross.

Honestly, I think this whole wheelchair thing has been harder for other people in my life to accept than it has been for me. Thinking about me in a wheelchair has made some people feel really sad and sorry for me. Other people, understandably so, have been caught very off guard when they’ve run into me using it.

But the thing is, I don’t feel sad about it and I don’t feel sorry for myself. It was actually an easier transition to make than you might think. I read an article once on the subject of how do you know when it’s time for a mobility aid? It stated that if you’re even considering using one there’s a good chance it’s already time and that seemed very logical and practical to me. As well, one of my closest friends is in a very similar health situation and she has been using a wheelchair for a while now. It’s allowed her to go out with her family and friends and to even travel a little. She really led the way for me. I saw what it did for her and I saw how gracefully she accepted it and used it to push past limitations instead of letting it become a limitation.

I wanted that. I wanted to be the one in control. I wanted to have some freedom despite my symptoms, not be limited because of them.

So I decided to give it a go. I haven’t used the wheelchair that much yet because it’s an old clunker that weighs about a thousand pounds and I’m not able to lift it in and out of the car by myself. Plus even if I could lift it, I still wouldn’t want to go anywhere on my own because the brakes don’t really work, the wheels have next to no grip and it’s not the right size for me so it’s a bit awkward to maneuver myself. But still, borrowing it was such a great decision! Ironic as it may sound, using a wheelchair has given me some freedom. Now that I know what a positive change it can make in my life, I am starting to jump through all the hoops required in order to get my own (SO many hoops…a story for another day) so that when I have to return this one in a few months I will still have that freedom. Hopefully I will have some independence, too.

I realize it might look like a step backwards, but I don’t see it that way. In the bigger picture it’s a step forward, an opportunity. It’s a good thing. So please, don’t feel sorry for me. There is no need for that. Celebrate with me instead! Be happy that I am finding ways to make this life work for me. There are a lot of things I didn’t think I could do anymore when really I just couldn’t do them on foot. As it turns out, though, there is more than one way to get around.

So to anyone else who is feeling stuck, maybe it’s time to try a different mode of transportation. Find some wheels and come roll with me. If you’re feeling trapped by circumstances beyond your control, if you’re feeling like you just can’t keep up with the world around you, or if you feel like you’re straight up headed in the wrong direction, come roll with me. Grab your wheelchair, bicycle, IV pole or rollerblades. Skateboards, wagons and golf carts are welcome as well. And if you’re really cool maybe you can find one of those soap box derby cars. Any metaphorical wheels will do!

Maybe we can’t take the path we planned on, but we will find another route. And wherever we need to end up, we will get there.

What’s that saying? Have wheels will travel?

Alright then. Let’s roll.