The Stages of Dysautonomia

I think about Dysautonomia and chronic illness a lot. Some days, thinking is all I have enough energy to do (there are other days when I don’t even have enough energy to do that).

I came to realize there seems to be a period of mourning with chronic illness. At least, there was for me, and it got me thinking about the 5 Stages of Grief and Loss. So, after looking through those articles as well as a few others, I thought I’d put together my personal take on the Stages of Chronic Illness as it pertains to my experience, and experiences I’ve heard from others, with Dysautonomia (specifically, POTS). Some stages may overlap, some stages may not apply, some stages may not be listed. Plus, differing types of chronic illness have different stages. In short, this is just what I have come up with after having a day or two where I had enough energy to produce coherent thought: :)

Relief/Validation: Yup. While the first stage of grief and loss is denial, I think most people with Dysautonomia initially experience some sort of relief because, typically, it takes six years on average1 before one receives a proper POTS diagnosis. Six years! I have also heard of people spending 20 years searching for an answer to why they feel the way the do while doctors have repeatedly told them it is all on their head. Not being heard or believed is horrible, but knowing – in your bones – something is affecting your body and not knowing what it is brings its own kind of dismay. How do you fight something when you don’t know what it is? Once “Postural Orthostatic Tachycardia Syndrome” came along for me, I was relieved. I was right – I was sick. And now, with this new name, I could turn all my focus and my strength and my determination toward it. I knew what I was fighting against.

Guilt: In our new world, we can hardly do anything we used to, especially at the beginning. We are – more than likely – completely debilitated, or have been for years. Everything reminds us of what we can’t do and who (we feel) we are letting down. There is so much we have to miss out on now. So much we want to give to our family and friends and children and dogs and yet we can’t. So they have to shoulder much more than usual, they have to miss out on seeing us, they have to have more responsibility, they have to forgo walks and time together. In this stage, all we can see is how our illness is affecting the people and things we love.

Anger/Denial: We can’t stand feeling the guilt so we stubbornly push ourselves to the max. We don’t care if we feel like crap. We don’t care that we know we’ll feel like even more crap because we’re just too pissed off about not being able to do the things we want to do and be with the people or pets we love. So we just pretty much give Dysautonomia a big middle finger and Go.
Usually, this makes us even far worse off and we just wind up feeling guilty ten times over. Which leads to…

Depression: Depression with a chronic illness is scary. I tried to do some research to learn more about depression and chronic illness but, other than this article, I couldn’t find much out there pertaining to Dysautonomia. However, it is a very real, very definite thing. Not only in potential chemical aspects do to the body-mind correlation, but also because we have experienced a huge loss. We had a life once and, now, it is different. It may forever be different. We don’t know. That’s some heavy shit to deal with day in and day out. I think it’s healthy to mourn the lives we used to have, but that doesn’t mean our sadness will dissipate. I wrote extensively about depression, Dysautonomia, and suicide here.

Acceptance: This one is tricky. I haven’t necessarily accepted Dysautonomia in the sense that I will have it forever (maybe I need to? I’m not sure). But I have had to accept that I have limitations. These limitations can change daily… change by the MOMENT even… and I am stubborn enough that I have to continually remind myself of them. To accept them or else I will just wind up making myself sicker (see anger/denial). I also continue trying to accept that limitations aren’t necessarily bad. I used to think they were and, some days, I still get very frustrated with them. But they have made me conscious of what is important to me. What is worth spending energy on and what isn’t. And learning to be as kind and patient and gentle with myself as possible.

Fear: If we’re lucky, we reach a point where we are able to function a little bit more. Or, at least, not as incapacitated as we used to be. And we carefully live life to the fullest we can without pushing past our limitations. However, there is always that quick change of weather, the “bug” going around, or nothing we can outwardly identify that sends us back to bed, back to the couch, back to memories of how it was at the beginning. And we almost literally can’t handle the thought of being back there. We’re scared that this might be it – we might be stuck where we once were and never able to get back to the place where we were fighting and living.

Management/Plate Juggling Stage: Here is where we usually have found some sort of combination of things that, if we're lucky, have let us maintain some semblance of functioning. However, I have discovered that it is impossible to keep all plates going at once (i.e. if I remember to eat well, take my meds, and stay on a sleep schedule, I forget to drink enough water. If I drink enough water, eat well, remember meds, and try to exercise, my sleep goes to crap, etc.) I think all stages can overlap with this one at some point (fear and acceptance especially) but I also think this stage is constantly shifting. We're still trying to figure out which meds work and which don't, try new things, eat different foods, etc. because, let's face it, the medical community is light years behind on this kind of stuff and we're basically just trying to figure out all this crap on our own.

I imagine I’ll add to this list as I experience more and learn more. I have known days where I have gone through all of them. Hell – single hours where I have gone through all of them. Some overlap. The order changes. There are probably more. But sometimes, with something so huge as a diagnosis like this, it helps to see things broken down a little bit.

What do you think? Did I miss anything?

 

1. “Physician Patient Interaction in Postural Orthostatic Tachycardia Syndrome.” Dysautonomia International, 21 June 2014. Web 10 Nov 2015. <http://www.dysautonomiainternational.org/pdf/PhysicianPatientInteractionInPOTS.pdf>

 

The "Art" of Chronic Illness

With #NaNoWriMo starting tomorrow, and me undulating between excitement (creation! art! community!) and nervousness (dysautonomia hardly lets me commit to a single day, let alone a month), I thought I'd toss this blog out there. As I edited it, I realized that -- in many ways -- the mental illnesses I struggle with can also apply.

 

Every one with a chronic illness is a unique and special person; we have to spend every moment of every day rationing out our spoons in order to not only have a shot at doing so again the next day, but also just managing to get through this one.

Chronic illnesses can constitute many things and, often times, they are invisible. Which can make it seem even more confusing to someone on the outside when they see us struggling between whether we’ll have the energy to make a good lunch or take a shower for the first time in weeks, doing the laundry or hanging out with our friends/children/pets, and don’t even get me started on the guilt of house work vs. well... everything.

Rarely do we actually have enough spoons to get us to that dilemma to begin with.

But what about those of us who are also artists? How can we even consider trading in spoons to write, paint, make music, draw, cook a beautiful meal or fix up a car? Especially when there are dishes piled in the sink, the house hasn’t been vacuumed in weeks, and we’re living off whatever’s in the pantry because we haven’t been able to get out of our pajamas let alone make it to the grocery store?

It’s like our own chronic illness hierarchy of needs, and poor Creativity is at the top of it.

But isn’t creativity what keeps us human? Especially for artists but, I would argue, everyone to some degree? And really -- when we’re dealing with an illness that robs us so much of who we are and what we used to be -- what do we need more than creativity? It is all too easy to become only about the struggle instead of feeding who we are as a person; we must keep that part of us alive just as much as our ailing bodies.

We have to create or else there’s little to fight for internally, don’t you think? And it would be awesome to build a community of people who get it. Who get that writing a single sentence or coming up with a perfect brush stroke is even so much more than it already innately is.

Art can be almost anything, I think. And chronic illnesses force a choice between what is most needed and what can "slide". It is a continual fight against endless fatigue and brainfog. It is sacrifice, guilt, determination. It is feeling like we’re failing our family and our duties -- feeling we're just failing. Period.

But chronic illnesses can also create an interesting defiance. An understanding of what really matters to us. We may be sick, we may have sickness, but we choose to feed our souls when we can.

And, most especially, we refuse to forget that art.expression.ourselves are far greater than anything that could try to take them away.

Dysautonomia Awareness Month

I feel like my autonomic nervous system got wind that it was Dysautonomia Awareness Month and decided to give me some talking points. Vis a vis (I feel all nerd-glowy for using that in a sentence...)

Vis a vis, I neared my record for shittiest blood pressure ever this week. A whopping 63/44. This is second only to the 50something/30something I had a few years ago. I... uh... can't remember exactly because I'm not entirely sure I was fully conscious at the time.

What I am sure of is that those of us with chronic illnesses are some of the most resiliant, badass people out there. We manage to do a lot more with far less than most people could even think of doing. Because we have to. Because we refuse to give up. And, for the most part, I've been doing pretty well lately. Things have been manageable. No running marathons or the like but I've been able to get dressed most days, go to appointments if I need to, take my dog for walks now and again, make dinners (with, like, actual cutting and pans and veggies and crap!), and focus long enough to get some writing in.

But here I am on Day 4 of Ridiculously Shitty (as opposed to Typically Shitty) Blood Pressure and while, yes, I'm trying to figure out potential causes as well as balance and take care of myself, I can't help but think, "Wellp, it was a good run while it lasted." And isn't that one of the biggest fears for anyone with a chronic illness? We value the crap out of the days where we can do stuff -- even "little" things like making dinner for cripes sake. We don't take the hours, or days, or weeks, or months for granted where we feel like we're living rather than just getting by. And, through it all, we never forget the worst it has been for us, which makes it so we can't help but think -- when we catch that cold, or push too hard, or the weather changes too quickly -- that it's going to finally, and permanently, take us back to that life that wasn't living at all.

Driving back from my appointment yesterday (instead of running errands like I wanted to, because my blood pressure plummeted), I thought about people who've gone into remission with cancer. How do they do it? Because God, now there is a fear of a hammer dropping for sure. Holy shit. Seriously, how do they do it? It's like the fear I have but ten-fold. And, in no way am I comparing cancer to dysautonomia but, rather, trying to acknolwedge the freakish badassery of cancer patients -- because with Dysautonomia, I can at least know I'm not necessarily fighting against death.

I also know I am armed with more knowledge now than when I was bed-ridden for 2 years. I know things to do that help and things to avoid. But none of it is a given. My nervous system could just decide to go flooshotty and no amount of water, or salt, or whatever could necessarily right it.

Except, nothing is a given for anyone. No one is guaranteed to wake up tomorrow. I know that platitude as well as the next person. Except, most people don't have to choose between taking a shower or feeding themselves in the morning. And maybe the fear of losing it all keeps me trying my best to live well -- which might not be something most people get to have either.

Recovery and "The Moth"

One of the best sentiments and explanations of recovery I ever found came from a TV show. 

That might be silly, but it was so profound to me that, at the time, I was brought to tears. And to this day, I still think about it often. Sometimes dissecting the depth of it. Sometimes just letting it drape over me without any real thought.

So, on second thought, I guess there isn't anything silly about that. Because that's what art does.

Anyhoo, it was an episode of Lost which (I've found) to be sort of a polarizing TV show. So, if you're on the "eh" end of the spectrum, hang with me here because it's worth it. I promise. :) A few days after they crashed on the island Charlie, drug addict, begins going through withdrawl. Previously, he had given his remaining stash to John Locke, telling Lock to keep it from him.

CHARLIE: You hear what I said? I want my drugs back! I need them!

LOCKE: Yet you gave them to me. Hmmm.

CHARLIE: And bloody well regret it. I’m sick, man. Can’t you see that?

LOCKE: I think you’re a lot stronger than you know, Charlie. And I’m gonna prove it to you... I’ll let you ask me for your drugs three times. And the third time...? I’m going to give them to you. Now. Just so we’re clear.

CHARLIE: Why-- Why are you doing this? To torture me? Just throw them away -- Get rid of ‘em and be done with it!

LOCKE: If I did that, you wouldn’t have a choice, Charlie.

Choice is an entirely different part of recovery I think, but that's something I'll have to muse over and write about later.

In summary, though, Charlie's withdrawl eventually worsens, and he comes back asking Locke to give him his drugs for the second time...

CHARLIE: I want my stash, Locke. I can’t stand... feeling like this.

LOCKE: Let me show you something... (Points out a cocoon on a tree trunk) What do you suppose is in this cocoon, Charlie?

CHARLIE: I dunno. Butterfly, I guess.

LOCKE: No. It’s much more beautiful than that. This is a moth cocoon. Ironic. Butterflies get all the attention. But moths? They spin silk. They’re stronger. Faster...

CHARLIE: Yeah. Wonderful. What’s the --

LOCKE: See this tiny hole? This moth’s almost ready to emerge. It’s in there right now, struggling, digging its way through the thick hide of the cocoon. Now I could help it, take my knife, gently widen the opening... And the moth would be free. But it’d be too weak to survive...

The struggle is nature’s way of strengthening it.

 

Now, there's an entire other conversation to have about the interaction between Locke and Charlie, what each of them are doing, how healthy/unhealthy it is for recovery, etc. But this post isn't about that. This post is about that little cocoon with the moth inside, fighting to get out and be free once and for all.

And that is the image I carry with me on my recovery. Most especially in the beginning when there were many relapses and sliding backwards and hatredfrustrationanger that now when I had decided I wanted to get better I still "wasn't".

But the struggle is part of recovery. Not just a "well, that's just how it goes and the way things work" part. But, I feel, a truly miraculous and necessary part. And, with the help of this two minutes, I was able to see that my struggles were actually aiding me. The sliding backwards, the relapses -- they were still moving me forward in my recovery because they were strengthening me in ways I needed to be. In self-understanding, in patience, in forgiveness, in determination, in conviction.

When you're in the mix of it, though, it definitely doesn't feel that way. Because that's what the eating disorder wants you to think -- that those moments mean you are weak. But, in actuality, it means you, and your recovery, are becoming an even greater force of nature. If I backslid again, I could remind myself that I have before, but that I was also able to right my ship. I had the strength to do that. Me. Myself. I had the choice and I kept choosing recovery. And a recovery with relapses and struggles, I think, might be stronger than one that is "perfect".

It’s frustrating for me –- I can't seem to find the words explain how I feel about it. I really wish I could, though. Because, now, that part of recovery -- that horrible, tortuous, hope shattering, drowning-in-guilt, "I can't even do this right" part -- strikes me at as something inexpressibly and achingly beautiful.

Because we can look at those moments and know we have been forged by fire.


("The Moth" script borrowed from: http://www.dailyscript.com/scripts/105_moth_network.pdf)