What’s up, y’all? (I lived in the South for a few years and y’all stuck.)
I’ve been off the grid for a little bit basically coping with new dx information, but it’s time to rejoin this space, and what better way than by participating in A Chronic Voice’s July Blog Link-Up? The site does great work and provides wonderful prompts for talking about our lives, so let’s get started!
Yes, starting is one of the prompts at hand, but I’ve also only written a few posts for this blog so far, so we’re still in a starting place here. I’m also in a starting place regarding a lot of elements of my health. In the last month, I’ve received confirmation about multiple things I’ve long known, specifically that I have hypermobile Ehlers-Danlos Syndrome (hEDS), and postural orthostatic tachycardia syndrome (POTS). Both of these conditions have been shaping my life for at least the last decade, but neither had a name.
So what does it mean to be starting out with this new information? For me, diagnosis has always translated as access to tools. That was my experience of being diagnosed as autistic, with depression and anxiety. It’s a typical experience if you’ve sustained a typical physical injury like a sprained ankle or broken foot. With complex health conditions, though, putting together your tool kit can be a lot more complex. Some of my new tools include enormous amounts of electrolyte tablets, an Apple Watch to monitor my heart rate, and a TENS unit. I have a long list of things I should start doing from my geneticist. It’s a lot to handle, and I can’t jump into it all at the same time.
What I can do, though, is get started. I can take a few steps at a time. Now to get fitted for orthotics so that those steps aren’t badly skewed.
The last few months have been heavy on the analysis, more so than is normal for my typical healthcare vigilance. I spend as much time scrutinizing medical practice and hospital websites, many hours away from my home, trying to find someone who can handle my combination of complex complaints. I take notes to bring to my PCP. Despite how much of my time this sort of analysis takes up, though, it takes a backseat to my constant environmental vigilance.
Since my MCAS diagnosis, I experience a lot more anxiety. Going out in the world has always made me a bit nervous — I don’t like big crowds, loud noises, bright lights, strong smells. Now, though, I know that scent exposures, especially, can cause serious health problems, possibly even for days. I get nervous if I leave the house on a brief errand or head to church without grabbing the pouch of rescue meds I keep in my backpack. After all, what if someone sits near me wearing perfume and I have trouble breathing? What if I accidentally eat something I’m reactive to? Suddenly becoming a person who carries an inhaler and Epi-pens is a great way to become more anxious, especially if you already live with the persistent worry that you’ll overextend yourself, get dehydrated, or be in pain. I am constantly on the alert.
As suggested by my notes on analyzing my environment, everything takes more planning these days. To avoid overtaxing my body by carrying tons of extra things — notebooks, books of poems, folders, my computer — I bought a small backpack the other day. It’s just big enough to fit my notebook or my planner, my medication pouch, my wallet, phone, and sunglasses. Nothing more. It means that I can just switch my medications between the two bags and put away the countless tote bags littering my house. It makes it less likely that, in the midst of planning an outing, I’ll forget my meds and spend the whole time anxious.
Other elements I need to plan: will I be walking so much that I need my cane? How much water have I had already? Where will I get more water while I’m out? Should I bring a snack? Will there be places for me to sit down? Will I be in pain? What order should I perform a set of errands to make sure everything gets done? What am I supposed to do tomorrow — and will I have the spoons to do so if I do these tasks today? Will I have the energy to make a meal when I get home? You can plan, but you can’t be certain everything will play out as intended. Shortly before I was in the hospital several weeks ago, my wife and I walked to the mall to get coffee while waiting for car repairs. We expected to spend the afternoon browsing and were delighted to find a little flea market-style section in the dilapidated strip mall. Instead, I started throwing up and we had to go home. The most likely explanation was a series of low level scent exposures plus hormone fluctuations, but who can really know? If man plans and God laughs, I’m a stand-up comic in heaven.
For now, I’m not planning much and yet planning everything. I just wrote down the names of multiple doctors and orthotists in my paper planner in advance of Monday’s appointment. But in my personal life, I’m just trying to hold things together each day. I’m trying to cook the produce in my refrigerator before it goes bad and not run out of almond milk or cat food. Because those things don’t go away when you’re chronically ill. They just get buried in the landslide of prescriptions and phone calls to doctors and bad days in bed. And they get buried in the good days when you just want to lead a normal life, rather than fussing over every detail. Somewhere underneath, though, I’m always vigilant, always — perhaps futilely — planning.