Dysautonom-a-what?

This is basically an appendix/addendum/supplement/whatever to the post “Have wheels will travel.”

While writing that post, I realized I haven’t really written much about dysautonomia so if you’re unfamiliar with the condition you might not really know what I was talking about. As it turns out, it’s a lot harder to provide a brief description of dysautonomia than I thought, at least for someone like me with a tendency to ramble. In an effort to avoid publishing a novella, I’m posting this piece separately for anyone who wants to know more.

Okay, so let’s chat a little bit about dysautonomia.

Dysautonom-a-what?

Dysautonomia is a fancy word that is unrecognized by any spell check program to describe a dysfunction of the autonomic nervous system (ANS). When you’re thinking about which functions are autonomic, think automatic. The ANS is in control of all of the things that go on in our bodies without us even thinking about them, things like heart rate, blood pressure, digestion, respiratory rate and temperature regulation. You can probably imagine, then, that when this system becomes dysfunctional a lot of chaos can ensue!

There are several different subtypes of dysautonomia but there is a lot of overlap between them. Specifically, I have POTS (Postural Orthostatic Tachycardia Syndrome) which as the name implies means that when I’m upright (orthostatic) my heart beats inappropriately fast (tachycardia). That literal explanation, however, makes it sound way more innocuous than it actually is.

Because of my POTS, I have a really hard time standing, walking around and just being upright for too long. Our bodies are constantly making adjustments in order to keep everything in balance. When we stand up, our bodies make even more adjustments to counteract the effects of gravity. When I stand up, my body doesn’t make all of those necessary adjustments. Blood pools in the wrong places, my brain doesn’t get enough oxygen, my cardiac output drops, my blood pressure becomes oftentimes unreadable and my heart rate jumps way up. Objectively speaking, this is what being upright can look like:

Dysautonomia looks like thisBP Monitor (8)BP Monitor (11)

As for how it feels? It feels rather terrible. If you’re with me when this is happening you will actually see the colour drain out of my face. I get lightheaded, dizzy, nauseous and shaky. Oftentimes I will get this ache in my gut, as if someone punched me in the stomach, and it forces me to bend over. My ears might start ringing, my vision might go blurry, and then there is like this force trying to pull me down to the ground. When your ANS is dysfunctional it’s also really easy to experience sensory overload. Situations that involve a ton of noise, a ton of people or a ton of frenzy can overstimulate the ANS and thus trigger a lot of the symptoms, sort like poking a sleeping bear.

Not every day brings vitals quite that wonky, of course, but every day brings symptoms and some days these symptoms make it almost impossible to be a functional human being. You know when you’re recovering from the flu and you just get zapped of energy anytime you try to do anything? After a few days of lying on the couch you decide to get up and be productive, then after 10 minutes you’re exhausted, you feel so sick and you end up back on the couch. It’s like that, except you’ve also just donated blood, you’re dehydrated and you’re being forced to run on the spot. It’s basically as fun as it sounds.

There are so many symptoms associated with POTS and dysautonomia and unfortunately they are not just limited to an upright posture. The tricky thing about POTS is that it is not an actual disease, rather it is a syndrome, a cluster of symptoms. For example, if someone is experiencing nausea, heartburn and abdominal pain, there could be any number of things going on and causing that set of symptoms. It’s a similar situation with dysautonomia; there are so many different possible origins, including autoimmune, genetic and viral, and in many cases the cause is idiopathic (which is a fancy medical way of saying “this is what is wrong with you but we have no idea why”). So many patients have multiple health issues which can make it really hard to tease out what exactly is going on.

There is no cure for dysautonomia but there are treatments that focus on symptom control. Many of these treatments involve lifestyle modifications but there are also some medications available to help control heart rate and blood pressure. As no two patients are the same, each patient’s management plan might look different. Personally, I am in the middle of trying to figure out the right combination of things that will result in the most improvement with the least amount of side effects. It’s a very fine balance!

And there you have it. That’s the best I could do in 800 words, but in case you are more confused now than you were 800 words ago I’m going to leave you with links to some excellent resources!

For more information about POTS and dysautonomia, I recommend checking out The Dysautonomia Information Network or Dysautonomia International. And for more information about day to day life with dysautonomia a few of my favourite blogs are Living with Bob, Just Mildly Medicated and Let’s Feel Better.

And finally, since the whole purpose of the appendix (or addendum or supplement or whatever) was to help you understand why I sometimes use a wheelchair, let me take you back there now!

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!

We don’t like to hear that we look good. Here’s why

It’s not a secret that people with chronic and invisible illnesses get really tired of hearing they look good. You might think this irritation is irrational and that’s okay, because six years ago I probably would have felt the same way. I mean really, who doesn’t like to get a compliment?

But it’s not the spontaneous and genuine compliments that get to me. It’s when someone tells me I look good after hearing that I’m having a really rough time of it, as if looking good is going to make up for the fact that my body is falling apart. It’s when I’m honest about my health, only to be met with a brief but awkward silence followed by a platitude about my appearance.

Well, you look good anyway…but you don’t look sick…and various other forms of that sentiment are on every “things not to say to someone with a chronic illness” list. So it’s not a secret that we don’t like to hear it. The secret is why. I can’t speak for everyone, but I also know I’m not alone in this.

The simple answer is that just because we look good doesn’t mean we feel good.

When we feel awful and someone tells us we look good it makes us feel like our struggle is being minimized. It’s not that we’re mad people think we look good, it’s that we’re worried people won’t understand we are still sick. If someone thinks we look good we assume they think we feel good, too. So we feel invalidated.

We have a love hate relationship with the fact that our illnesses are invisible. It’s nice to be able to blend in, and it’s nice to be able to be selective about who we share it with, but sometimes it makes it harder to accept that things are different. When we look in the mirror we see the same person we always were. We see these bodies that used to dance, run, work, sing, cook, whatever, and then it’s a letdown when we remember that we can’t do those things anymore. So we feel disappointed.

Not only can we not do the things we want to do, but our bodies don’t even do all of the everyday things they are supposed to do. Digesting? My body doesn’t really do that. Standing up? Yeah, not a fan of that, either. It seems like our bodies are always letting us down. So we feel betrayed.

All around us we see all these people doing these everyday things without thinking twice while we’re just struggling to stay on our feet (figuratively, yes, but often very literally, too!). Because we didn’t understand that struggle ourselves until our own illnesses hit, we know that unless other people are touched by illness they can’t fully understand that while we look fine on the outside, on the inside we are falling apart at the seams. So we feel isolated.

And since we look fine it’s also hard for other people to comprehend our limitations. Even if they do comprehend them, not being able to see those limitations make it easy for other people to forget they exist. We often have to provide multiple explanations or reminders and then we worry about being a downer and holding other people back. So we feel guilty.

Sometimes looking good or healthy can even be an obstacle to getting proper treatment. Most of us have worried at one point or another that we don’t look sick enough to be taken seriously. So we feel defensive. All of us have had doctors question our symptoms based on our appearance, and tell us that our problems are all in our heads. All of us have been treated as hypochondriacs, and after going weeks, months or even years without answers we start to wonder ourselves if we’re just going crazy. So we feel doubtful, too.

And here’s one of the biggest things that we don’t talk about: We feel insecure.

When we become sick our body is no longer entirely our own. For one, we have a lot of doctors wanting to know about a lot of things that we’re not always comfortable talking about. And two, we lose a lot of control over how we look. We feel like we’re too skinny because we haven’t been able to eat lately. We’re unhappy with how much weight we’ve gained since starting a new medication. We don’t like how puffy our face is due to fluid retention. We’re frustrated by the acne that’s showed up because our hormones are out of balance. We’re exasperated by the dark circles under our eyes that won’t go away no matter how much we seem to sleep. We are acutely aware of all the ways that our illnesses and treatments have altered our appearance and when someone tells us we look good it’s easy to start thinking about all the ways in which we don’t. It’s hard to feel comfortable in our own skin when it doesn’t feel like our own skin. So we feel self-conscious.

We know that when you tell us we look good it’s because you’re trying to be supportive, or you don’t know what to say but you want to be encouraging, or maybe you really do think we look good and you want to make us feel good about ourselves. And we know that it seems silly for us to resent a compliment so much.

But it’s more than just irrational irritation. Invalidation, disappointment, betrayal, isolation, guilt, defensiveness, doubt and insecurity. All of that is tied up in our appearance.

So thank you for trying to be supportive, but if we open up to you about how we feel please don’t default to how we look. Listen and try to understand. Acknowledge the things you can’t see, the inside stuff. The resilience, the patience, the determination and the hope.

Encourage us from the inside out, because at the end of the day, appearance aside, that is what keeps us going.