The lowdown
a life update | Alexithymia | Interoception | a book recommendation | and a further peek into life with EDS, MCAS, ADHD, and Autism
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Ordinarily, I don’t realize how much I’m suffering until the suffering has alleviated or ceases on its own.
Life with Alexithymia and poor interoception is interesting, to put it mildly. I’m basically having to train my adult self how to interpret things that most (neurotypical) people learned to do in childhood, or seem to understand inherently.
Not me, though. I was the kid sweating profusely, looking like a roasting tomato in class. Another student came in late, and upon entering the classroom said, “Eww. It’s too hot in here. Can we get some A/C?”
Why didn’t I think of that?
Early last week, Brian said that he thought our mattress topper was no longer good. “It’s uneven, see—” He stripped the sheets off his side to expose the visibly lumpy cover.
Huh.
After one night with the new topper, I slept well for the first time in I-don’t-know how long.
To boot, I forgot to strip the duvet cover off of, and remove my one-person weighted blanket from the load during the midweek sheets-washing, which I usually do on Saturdays. By the time I was ready for bed, the weighted blanket still wasn’t dry. So, I used my 29-inch weighted lap blanket* instead.
I assumed it was just the upgraded topper helping me sleep. But over the course of a few nights, I tried to be cognizant of my sleep health and experimented with how I slept best.
I discovered that, without a weighted covering, I’m a lot more restless and my quality of sleep is severely reduced. The full-body weighted blanket is actually more of a sleep-disturber for me than the lap one is, which I cover only my lower ribcage and torso with, but still better than nothing.
There’s something about having my legs weighted down that caused sleep disturbances. Maybe the feeling of being trapped (or worse)? The lap blanket, however, makes me feel anchored and safe.
Contrary to the size of my body, I often feel like I’d float away if I wasn’t wearing a heavy coat or backpack out in public. And, at home, I have small, weighted blankets and shoulder wraps to help calm my nervous system and help me to feel safe and grounded.
But, knowing myself as much as I do right now, unless I hadn't messed up that day and forgotten to take the weighted blanket out of the sheets before washing them; I would have continued dealing with minimally restful sleep for whoever-knows how long because I don’t know any better until something is changed or someone else changes things up.
Alexithymia is the inability to recognize or describe one’s own emotions.
For example, before my family was all diagnosed as neurodivergent, we tried to improve familial communication via Family Therapy.
Before each session, our therapist would ask how we were feeling at that moment. I’ve never had a clue how to answer that question honestly, but I also wouldn’t call how I would answer a lie, either.
Going 33 years undiagnosed, to get by, you’d have to learn how to constantly adapt and blend in. And blending in requires lots of understanding of people to mingle—hyper-vigilance, we could say.
I knew enough to be able to assign emotional terms to deeply introspected physical feelings if I felt any. So, if I felt pain that day, I’d say, “I’m feeling [insert: sad, frustrated, in pain].” If I said, “in pain,” the therapist would ask me to elaborate or ask me to assign an emotion to the pain—he was a stickler for the rules.
“I don’t know” wasn’t an acceptable answer for anything in my youth. As an adult, though, when I don’t have an answer for something knowledge-based, I say it: “I don’t know, but I can look it up.”
But, emotion-based? How can I not know how I’m feeling?
So, other people’s responses train me/high-masking neurodivergent people to always have some kind of acceptable answer, otherwise it opens us up to further interrogation or scrutiny. And, really, who wants that?
Poor interoception is a similar sensory process to proprioception
And it’s something I also struggle with.
In an article written by Amanda Morin on interoception for Understood,1 she stated, “Receptors in your muscles and joints tell you where your body parts are. That’s the basis for your proprioceptive sense. It makes you aware of where your body is in space. When you take a step, for example, you know your foot is off the ground. You don’t have to think about it. [People] with poor proprioception have trouble with this.
“Interoception is a similar process. But the receptors are inside your organs, including your skin. They send information about the inside of the body to the brain. This regulates vital functions like body temperature, hunger, thirst, digestion, and heart rate.
“Interoception helps you know and feel what’s going on inside your body. You can tell if your heart is beating fast or if you need to use the bathroom. You know if you’re hungry, full, hot, cold, thirsty, nauseated, itchy, or ticklish.”
I, for example, generally don’t know or feel a good deal of these sensations until they’re cranked up to their max.
I’ve heard friends say their tummy is rumbling or they “could eat in the next hour or so.” That boggles my mind. I feel one of two sensations: I’m not hungry, or I’m ravenous and possibly ready to vomit—a lesser, interesting response my body experiences when going without food for an extended period of time. But definitely burping up acid that lasts the rest of the day happens if I don’t eat at least three small meals a day.
I have to set alarms to remind myself to eat. When I didn’t, I would go without breakfast (or lunch sometimes too) and over-eat for dinner as my body shook violently from low blood sugar.
It’s why I also just go ahead with the shockwave therapy treatments (for Ehlers-Danlos Syndrome2) on my feet and ankles every six weeks, even if I didn’t think I needed it going in; it helps keep my connective tissue more “regulated,” and leaves me with much less chronic pain and with fewer injuries overall.
Although this has only happened a few times, I’d walk in feeling fine, but during the podiatrist’s foot exam, we’d notice I had some spots that produced minor pain. Or, I wouldn’t notice until the shockwave gun went over a painful spot that there was even a problem at all.
In those times, I walked into the office thinking we’d have a quick exam, and I’d be out the door without requiring the treatment, simply following up in another six weeks.
But, no. With the actual shockwave treatment, if there’s no pain, there’s no injury. I’ve had only one session in three years that produced very minimal pain-feedback from the shockwaves.
The main session that comes to mind where I walked in thinking everything was just fine was the third most excruciatingly painful treatment I’ve ever endured.
I just don’t know what my body is trying to tell me.
But, I’m working toward learning that skill to better take care of myself.
Due to the nurse at my (now former) immunologist’s office blocking approval on refills several weeks before our appointment, I’ve had to reduce my make-or-break antihistamine, Ketotifen (for MCAS3) over the past few weeks.
Unfortunately, it’s a drug that’s not FDA approved; I have to order it through Canada, and it’s shipped from India. (It’s currently en route, thankfully, but it’s been in Belgium for three days, and I’m getting nervous. I have about a week and a half of reduced-dosage meds left….)
It can take three to five weeks to receive it after the order is confirmed.
Although I was sick and have minor congestion leftover, the brain fog and fatigue have been unmanageable. But, it’s been going on since I got COVID back in 2022, which seemed to change my brain, but got really bad in the last six months.
And it’s seemingly gotten worse since reducing the Ketotifen in attempts to not have to stop taking it outright.
Now, I’m far behind on my projects, and barely have the capacity to take care of my weekly recurring tasks that are in place to help me maintain a professional and even personal baseline.
Laundry is piling. The house is a mess. Paperwork is overflowing in the little organizer-slot designated for it. And, outside of writing this, I left “complete and turn in ballot” as the only other thing I’ve forced myself to do over this past week…. and I procrastinated both until this morning, and the deadline at the ballot dropbox is tonight.
I had my immunology follow-up on Friday and brought up the brain fog, fatigue, weight gain (dammit), and worsening heat intolerance to my doctor.
She said, “You have to decide what’s important to you. You have two choices: You learn to survive with the mast cell symptoms, or you deal with the side effects of the antihistamines.”
It was my second appointment with this new doctor, and it was my last.4
The thing is: I didn’t notice the correlation between the brain fog, fatigue, and the increase in the cetirizine antihistamine dosage that she told me I needed.
The Ketotifen—which the immunologist blamed for all the side effects—was increased by 1 milligram while the cetirizine was increased by sixty. I also explained that the symptoms got significantly worse only after I had to reduce my Ketotifen to two milligrams daily from four.
My primary care physician pointed out these connections when we reviewed my medications list for my three-month check-in two days before I met with the immunologist. If she hadn’t, I’d still be taking 80 milligrams of cetirizine (in addition to three other antihistamines+, mind you), and I would’ve had to skip writing to you yet again this week because I couldn’t.
I’ll be frank: I’m frustrated.
Contrary to my vulnerable moments of confiding in you and in people I’m close to off-line, I’m a generally hopeful person. I try not to let things keep me down, and I try my best not to let my low-moments make others feel down, too.
But, I’m struggling.
I’m ashamed to admit that, after the immunologist’s nurse rejected my refill request several weeks ago, I said, “Is this what my life will be like?” Crying as Brian held me. “Is this worth it?”
Without the full story, maybe that seems dramatic. (And I’m certain it’s not the first time I’ve said or written that.) But when your neurophysiology—something you can literally do nothing to change outside of creating life-bandages to get by with—exacerbates other conditions, it feels extraordinarily defeating.
And when the medications that are supposed to help one condition’s symptoms worsens your ability to function as even a very part-time-working human who can barely put the bare-minimum into a personal life, too, it feels debilitating.
After allowing myself to steep in self-pity for a beat, I decided to focus on small action-steps to help lift myself back up.
The now-former immunologist agreed that I could spread out a different antihistamine throughout the day instead of two large “dosing-dumps” twice daily of cetirizine. And, so far, it’s helping.
Thank goodness.
I knew there was no way around the fact that I will not make progress until I can listen to my body.
For me to be able to listen to my body, it will take focus, dedication, and intention. And help.
I’m still on the hunt for an occupational therapist who works with AuDHD (Autistic + ADHD) adults that takes (my, but some don’t even take any) insurance. Until then, to fill in the blanks, I found a book called The Power of Focusing*.
From the back cover copy it’s described as a “…simple and natural process that allows you to develop an honest, productive relationship with your emotions.” Although not specifically designed for neurodivergent people, it’s a book that guides you through easy steps to strengthen your mind-to-body connection through a meditative, focused practice.
I’m still in the early chapters, but already finding it useful.
At times, it reads a bit woo-woo, and the introductory pages absolutely seem like such; but I’m stripping the skepticism from my reading experience and trusting the process.
Presently, I’m focused on taking each day one day at a time.
When I’m tired, I rest in some way, whether that be closing my eyes at my desk for a few minutes or lying down to take a nap.
On the rare day that I have some energy, I go for a walk. I’ll sit down at a coffee shop or come back home to my upgraded workspace, and I write.
If I can muster up enough energy to dabble in another project, great! But I’m not forcing this.
I’m ready to get my brain back. I know it’ll take time, and I still run the risk of backsliding with the warmer months ahead, but I’ll do everything possible to continue writing.
Thank you for your patience.
I’m hanging in, and I appreciate you hanging in with me.
Much love,
Sara
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P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.
What I share is not a substitute for medical advice.
Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.
Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.
Comment with any questions, and I’ll respond as soon as I can.
Any link listed with an asterisk(*) behind it is an affiliate link. By using that link to purchase an item, you provide me with a small commission at no extra cost to you. Although small, these little income boosts help to keep Life and Other Stories going, as well as help fund any in-the-works projects. Thank you for your contribution! I’m grateful.
Interoception and sensory processing challenges, Understood
What is EDS?, The Ehlers-Danlos Society
(What is) Mast Cell Activation Syndrome (MCAS), American Academy of Allergy, Asthma & Immunology
Thankfully, the one-year blackout period my previous immunologist was contractually obligated to abide by just ended as of this month, and I was able to find him again. He’s now working at an allergy and immunology clinic that’s an hour and a half drive from Seattle. But, he’s worth it to me. Plus, I’m hopeful he’ll be fine with virtual appointments…. 😅