March 21, 2023
This is a confusing and complex sort of thing. This may be something that was a long time coming, or not. We don’t know yet.
In the middle of the pandemic, it felt like a collective discovery was happening as a striking number of folks were joining the ADHD club. With the loss of their systems in a world gone topsy turvy, they came to realize they’d been compensating for ADHD all their lives. Their coping mechanisms had masked it until everything fell apart.
Rewind further back past this trio of hell years was my personal slow discovery of anxiety and depression, and how they feature prominently in my life alongside my chronic pain and fatigue. The awareness of depression came first, acutely, suicidally, and faded in time.
But the anxiety! Gosh, the anxiety was probably my companion since I was in kindergarten and I simply never knew what it was. A good friend, Sarah, has both autism and ADHD and stunned me when she shared this tidbit: “There’s a saying that a child with anxiety doesn’t say “I have anxiety” they say like “my stomach hurts” because that’s what they know. ADHD and gastro issues are often related.” That describes me to a T. My memories of my earliest years were: avoiding socializing or talking at all, getting sent to ESL because I wouldn’t speak, and having a stomachache every single morning. For years I blamed them on eating breakfast. Now, I think that it was anxiety eating me up inside.
Yet I was 35 years old before it occurred to me that these had anything to do with anxiety: edginess, tightness in my chest, difficulty breathing normally, impending doom. It took years of friends talking about their anxiety to spot the similarities.
I’m a slow learner.
When I was 18, I experienced severe chest pains and my coworker told me that I was having a panic attack. I didn’t know what to do with that information. We didn’t really have Dr. Google back then. What is a panic attack? Why would I be panicking? What’s there to panic about? (Other than working full time to pay for my college tuition, the $6000 a month in monthly bills at home, the $1000+ a month in debts incurred over the years as my parents eked out a living from their business while supporting family, and my dad keeping most of it together with cons and Scotch tape? What indeed? /sarcasm)
All of these bits cascaded together like tiny bits of sleet, glacially slowly, until Abby’s post made me ask myself questions that I’d missed for a long time. When I did, and when I realized I had checked an awful lot of boxes, my first reaction was: I didn’t want to be diagnosed. I was kind of embarrassed, to be honest. I don’t want to be “more broken”.
But talking through it with Sarah and other friends who are on the spectrum and/or have experience with ADHD helped immensely, and helped me start to see how the puzzle parts of my history might fit. I have been forcing myself to mask and manage all this time, punishing myself for being lazy and/or incompetent. Insisting that I had to force myself through with willpower and grit.
The scattered brain feeling, being easily upset/emotionally on edge, hypoactivity that I’d assumed was chronic fatigue. I avoid making certain commitments for fear of not finishing them. I take on too much, daily. I can’t remember names unless they’re dogs’ names. Hypersensitivity to criticism…woof, yes. More on that below. I force organizational systems on my life specifically because I’m not good at staying organized. I can’t listen to someone at work talk for a minute without zoning out. But it’s not because my brain is busy with other thoughts, many times it just feels empty.
Sarah shared the following thoughts, among a lot of other really useful thoughts, during our chats:
“I can always tell when I’m overstimulated because everything and everything is literally the worst and I can’t handle it” (This accurately describes my six months before March.)
“When answering questions be conscious that you’re not masking when answering. “does x cause you trouble” it’s hard but try not to be like “Well no not really I manage every day-” you probably shouldn’t have to “manage” to do something.” (Sometimes I don’t even realize I’m masking! It’s just that I’m so used to coping, it’s become second nature.)
“There’s zero benefit to agonizing over something inconsequential or something you can’t personally change all day and yet…!” (On bad days when I screw up something and my RSD kicks in something fierce, it feels like trying to move boulders to move my focus)
So many of these things rang too true for me.
Related, around this time I watched Douglas on Netflix. Hannah Gadsby’s bit about the dog park had me in stitches. One part down to her delivery, two parts down to recognizing that same tendency to misread social cues. Of course, she was referring to an autistic characteristic but the incident itself made perfect sense to me. I’ve got at least three embarrassing memories of fixating on entirely the wrong detail in a conversation and walk away from them concluding I really should never speak to people again, it’s for the best.
Finally I bit the bullet and emailed my doctor who promptly sent a referral and the Psych department immediately set up an appointment for me.
That was both startling and appreciated. My consult, however, did not go as anticipated. They had me fill out the anxiety and depression scales ahead of the appointment and it turns out that I scored too high on both to be evaluated for ADHD yet. That was quite the surprise to me. In hindsight, it shouldn’t have been. In many of my therapy sessions over the past year, I’ve been struggling with how overwhelmed I feel, how angry I feel, how much I’m numb to joy and unable to appreciate the small moments of good. At some point you’d think it would have occurred to me that perhaps I was able to connect as an involved parent in the years after JB was born because I was on antidepressants. This time around, I didn’t go back on the meds immediately after Smol Acrobat was born. I’m trying to cope through COVID, having two young kids, a full time job, a partnership that gets very little time, constantly feeding everyone, and wondering why I’m always irritated and prickly.
Like I said. Slow learner!
One problem is I’m a very high functioning depressed person. I get a hell of a lot done even while feeling worthless or hopeless or angry at the whole world. My survival skills are strong. I still worked as normal when I was feeling suicidal because dead or alive I had (have) obligations and I won’t stop for anything. That’s less of a commentary on my workaholism and more on how we live in a capitalist hellscape where even planning my own death ten years ago, I was also equally concerned about leaving enough money to cover the bills.
Anyway. During that appointment, we agreed that I’d go “address the depression and anxiety” and then come back for an evaluation for the ADHD later. I had a ponder, talked to some friends, and decided to try medication again. I’d used it before to treat chronic pain but as an antidepressant that worked for my pain and PPD, the odds were good that it would work again for the depression.
The first three weeks on the antidepressant was agony. Everything resulted in the weight of the galaxy landing on my shoulders. I felt anxiety ramped up to 11 over everything. Every tiny difficult thing threatened to send me down a terrible spiral. One weekend was consumed with passive (suicidal) ideation. I was walking on mental eggshells for weeks. But I hung on. 8 weeks after starting them, I am feeling the benefits.
My mental health on the antidepressant is much improved. I start my days with a much lower level of rage than had become normal. I feel less like Sisyphus emotionally. It’s even mildly reduced, by just a touch, the physical fatigue that weighs me down so dramatically. For the first time in years, I’m feeling mild interest in doing fun things. I’m not actually doing them yet, logistics are still way too much effort, but I haven’t felt “hey I want to do that” in a real way since the pandemic started. That shut down with COVID and stayed shut tight with depression.
A certain amount of anxiety remains, which isn’t a surprise. My inability to remember names is still a huge frustration. It took me an hour and a lot of mental flailing to remember Nicole Cliff’s name, for example. I loved her on Twitter but could not for the life of me remember her name. I am still feeling what seems to fit rejection sensitive dysphoria (RSD) pretty intensely and have to work hard at avoiding that spiraling.
A fun new problem, maybe related, maybe not: severe orthostatic intolerance – my world spins wildly when I stand up, or my BP drops precipitously, or both. I have come near to blacking out several times.
It might be time to reschedule that ADHD assessment. Maybe in a couple weeks.
February 15, 2022
Everyone handwaving COVID and omicron makes me want to bite something. It’s “just a cold”, it’s “no big deal”. Except for a lot of people, it causes Long COVID and there is not one thing in the list of Long COVID symptoms that makes me say yes sure sign me up! That’s because I know better – I already live with most of the COVID and Long COVID symptoms. In a nutshell, it sucks.
I talk about fatigue here a lot these. I talked about chronic pain here a lot over the years. I’ve lost a LOT to my chronic pain. My ability to enjoy most parts of life. My ability to function completely independently. My favorite hobbies in the world. My ability to care for myself. My ability to sleep. My ability to trust healthcare can help with anything. I was gaslit about my pain for over 20 years because they didn’t have the tools or training to help me.
I didn’t realize how much I was losing to my chronic fatigue, which I always chalked up to being tired of being in so much pain all the time – it’s exhausting walking around feeling like your entire body is on fire! It’s exhausting to experience inflammation in every joint. It was logical! After all if you’re twisted into knots with tension from pain, that’s tiring! Turns out that wasn’t the only problem.
Over the past two years, as my chronic pain baselines started to get lower, I noticed that my fatigue continued to get worse. That didn’t make sense. I’m not at all cured and I still hurt every minute of every day, but it’s less than before. Before was the equivalent of having various body parts clamped into a vise, cranked tight until just before you lose feeling, all the time. Now it’s more like it’s cranked halfway there. There’s a significant difference. Why is my fatigue still so deep?
I’m not just tired. Though, honestly, I don’t clearly remember how it feels for an adult human to have energy, I have an intellectual recollection. Once upon a time, if I could sleep, I’d wake up and feel like I’d slept. Not like I’d gone twenty rounds in a boxing ring. In the before times, if I ran to catch the bus, I’d huff for a while, catch my breath, and then feel ok enough to walk to my next stop. If I went for a run, I’d feel the burn, walk for a bit and then have a second wind to run back home.
That’s not how it works with chronic fatigue. When I sleep, I wake up feeling like I just hit pause on my downward spiral. I didn’t recharge or reset, I just slowed down the drain. When I walk or run, if I feel good enough, and I hit breathlessness, that’s where I’m stuck the rest of the day. But if I feel good, I have to take advantage of it because it’s going to go away no matter what I do. I can’t conserve it for later. There is no later for that very momentary bit of bliss where I almost feel like a human. If I choose to do an activity on the weekend, that’s the only one I get. I have to factor in a two hour rest period after the activity in hopes that will let me stabilize my tiredness enough to continue to function. If I’m fool enough to schedule two activities in a weekend, I will be scraping the bottom of the barrel for at least a week, probably two. If someone is a big enough jerk to expose me to their “just a cold” (a real cold), I will struggle to get back on track for six weeks and I will hold a grudge.
I start each day with the weight of an anvil on my chest. Bonus mornings bring with it 50 pound weights on each limb. Even worse mornings include all the above benefits PLUS the feeling of having been hollowed out so I could blow away with the next little breeze. Lucky I have those weights weighing me down! That’s how my day STARTS before I plunge into child caretaking, making breakfast, school dropoff, dog walking, more childcare, work, more childcare, more work, school pickup, more work and dog walking and household management and dealing with dinner and bath and bedtime or more work, then bedtime. I am (non sarcastically now) very lucky that PiC and I share the shareable load a lot without ever having to ask – he’s a fully capable responsible adult who wouldn’t dream of leaving it all to me. He always takes as much of the physical load as possible to spare me and I do much of the planning and logistics wrangling. But half of too much work is still a ton of work and I never start any day with a full tank of gas. If I’m particularly well off, I start with half.
All this to say: I DO NOT WANT COVID. I’ll never understand how people can blithely dismiss the risk to others if they had an easy experience with it. “We had it and we were fine, why vaccinate?” I hear way too often. I knew people were selfish but this is a PARTICULARLY awful kind of selfish that truly doesn’t care if it destroys lives.
In any case, I have no interest in arguing with those people. I’m not going to change their minds and my energy is far too precious to throw away on knuckleheads.
On the chronic fatigue front, I have been getting some medical guidance on managing it a bit better than I have been.
I used to take magnesium for restless leg symptoms I’d get now and again and a Vit B complex. We have added Vit D, zinc, coQ10, omega3 fatty acids, and Vit C. My doc also prescribed a medication recommended for fatigue as an off label use for days when I’m flattened and really cannot afford to be. It becomes ineffective if taken it on a regular schedule so it’s prescribed as “take on random mornings as needed.” Hilariously my doc apologized that the prescription sounded so weird but that’s exactly what I wanted. I’m not looking for a habitual medication-based fix, mainly because I know there isn’t one short of going with hard drugs (I hear that’s one reason cocaine was so popular and I get it boy do I get it but also boy do I not want to get addicted to cocaine), I just need some help to survive on the worst days. For the days that range between the worst and the best, I’m relying on lifestyle-based changes.
In some ways the lifestyle changes are a disappointing route to take. The major theme is don’t do the things. Don’t do all of them. Don’t do most of them. Only do the ones you can do without hitting your hollowed out, point of collapse, feeling.
You know how little that leaves me? With MAYBE one fun thing per week for up to two hours. Sometimes I don’t even feel up to that much.
It’s a hell of a way to live but I’m still more fortunate than most and I do want to make the most of what time I have. That doesn’t mean I’m willing to gamble with what I do have in the lottery of “will it be ‘mild’ COVID with long lasting effects or not?” I truly don’t understand people who blithely assume everything will be fine if they get it and that they’ll get great medical care if they need it. That has not been the experience of many people with long term illness or disability.
I don’t have any grand conclusion because I’m still living this chronic life. But I refuse to voluntarily make it worse!
March 18, 2019
Going gluten free was WAY easier than this latest iteration of eating of cutting out sugar and way down on carbs. We searched out a few GF substitutes for my usual favorites and called it a day.
Cutting out sugar and drastically reducing carbs is a lot harder.
I started this journey last year and after six weeks of experimenting with a gluten free diet, I wasn’t getting concrete results. If gluten was my problem, cutting it out should have definitively decreased pain. Instead, it seemed, mmm, iffy. I sort of hurt less, but it was really hard to quantify. When my friend separately suggested I give her no-sugar thing a try, I figured it was worth a try too because really, why not? It couldn’t hurt. Besides, as my doctor said: whatever the reason, reducing processed sugars is always a good thing.
We started with increasing vegetable intake on the theory that would be better than starting by taking all the tasty foods away and languishing with boiled eggs and cheese left on the menu. Not that I’d ever turn my nose up at cheese, I love it, I could eat it at every meal. (I probably shouldn’t.)
As we made the changeover, the results were almost immediate. I had my first low-pain day in years. Then another. I literally had trouble identifying what I felt was different because it was an absence of teeth-clenching pain. (more…)
November 28, 2018
PiC and I grew up eating tv dinners, fast food from McDonald’s and the like, and all kinds of other junk food. I still have a nostalgic yearning for those Jeno’s frozen pizzas, we used to buy a huge stack of them at a time for $1 each. Or the cheap Chinese takeout from the place across the street from high school, we’d swing by there on the way home and for $5 fill up our tanks to the brim with the veggie medley, orange chicken and chow mein. (I miss chow mein.)
It was cheap easy sustenance, if not quite nutritious. We both had parents who worked away from the home and while my mom cooked hot dinners for us every night (in addition to working 15 hour days, thanks for the help Dad) we were mostly on our own during the day once we could be trusted to be home alone.
I learned to cook basics very early – rice in the rice cooker by 4 or 5, boil water for hot tea and ramen, scrambled eggs or eggs over easy on the stovetop by 6 or 7. The frozen food life started in our preteens and my addiction to boxed cake mix started right around then as well. As a teenager, my Saturday (late) morning breakfast treat to myself was a fry-up: french toast, scrambled eggs, whatever else that could be fried. The idea NOW makes my stomach turn a little bit because I remember how much grease was in there!
PiC started on a healthy food kick in his mid 20s, and my acquiesance to the whole thing started in my late 20s, so now we’re largely a healthy foods family. That’s not to say that our diet is totally boring, it’s not! At least it’s not because of choosing to be healthier. For that, I just find ways to reduce saturated fats and increase vitamins, minerals, and other good things for a balanced diet. It IS boring in that I rotate the same 20-30 recipes depending on what I can think of and what’s in season. (more…)
September 5, 2018
Month 4!
I didn’t get creative this month with food, travel logistics ate my brain, but my family did. For our trip to SDCC, my beloved Mama S made me so much good food, adapting my favorites to a GF version. She’s the best.
This was a very baking month. I turned out a few versions of rolled oat and peanut butter cookies. They’re still not quite right, they come out too flat and nearly crispy. I hate crispy cookies. Chewy is the goal! Next round, I’ll sub in powdered sugar for the granulated sugar and refrigerate the dough before baking to see if that helps.
Do you suppose reducing sugar in a cookie recipe without any substitutions would be dreadful? If the recipe also has peanut butter and chocolate chips, it feels like a 25% reduction in sugar should be safe.
It was also Muffin Month. I bake like I work, I do what I feel like when I feel like it. And July felt like a muffin month so I baked as much as I could and froze the rest against a month when more cooking than baking was happening. It’s my version of making hay while the sun shines – when there’s energy and willingness to bake, roll with it.
Month 5!
Meatloaf! This was my first meatloaf since going GF and I substituted ground up rolled oats for the breadcrumbs. It was a little softer than usual, probably because I used a giant zucchini instead of a small one like usual, so I’ll double the breadcrumbs and reduce the zucchini next time.
Coconut curry (from a packet). We picked up a GF curry packet at Sprouts and combined that with my sauteed chicken thighs, cubed potatoes, and sliced carrots. We usually don’t like cooked carrots much but JB especially requested them.
Roasted pork log. I don’t remember which part of the pork this was but I slow roasted it at only 275 degrees with garlic, sadly we were out of pesto or it would have been covered in that, and we ate it for daaaaays with rice and veggies on the side. Later, the second and third pork roasts I made were slow roasted with pesto, for 3-4 hours, and it was perfection. I’m not making it any other way again!
Pork turned into enchiladas. PiC was perfectly happy eating the pork as is but I decided not to push my luck and transformed the leftovers. He was skeptical the first time I pondered this aloud but as is almost usual when it comes to experimenting in the kitchen, my idea panned out. I made red and green sauce enchiladas in the same pan because each packet only makes 4-5 enchiladas but our casserole dish holds at least 10-12. Leftovers!
Shrimp and cheesy grits. I finally perfected the water to grits ratio (3 cups water to 1.25 cups of grits) when I’m also adding lots of mozzarella cheese, and cooked it all on low. We get our large shrimp frozen on sale from Sprouts for $7/lb every so often and I grill those babies right before serving dinner. This was a hit – so much so that JB ate all the shrimp that we adults didn’t eat, and nearly all the grits as well.
Speaking of perfecting ratios and recipes, I’m not there yet with zucchini but they’re back on our dinner table and not just hidden in pasta sauces, muffins, and cake. It turns out, when done well, we all like it. The problem is the darn things go from not cooked to over-roasted in some mysterious and mystical way that has no relation to temperature, cook time, or cut size. It’s driving me up the wall but also got my attention in a way that no vegetable has since we discovered brussels sprouts and bacon are a winning combination. For the moment. Update: 7 minutes at 400 degrees seems to be doing the trick as long as the quartered slices were big enough. My store bought zucchini has also been going into several rounds of a modified lower sugar version of Erin’s chocolate cake.
August 1, 2018
I’m an introvert, through and through. I’ve preferred to work from my home office, sofa, bed, a dark corner, over going into the office since 2006 and pretty much nothing has shaken my core love of being alone for 8-10 hours a day to work my work thing, dog at my feet.
On the other hand, I adore my little family so I always look forward to seeing them at the end of each work day. In those hours that I’d normally keep working or cut bait and relax … well, no, bury myself in a book because I don’t relax well, my evenings have been wholly subsumed with family time and I’ve been happy with that.
It’s limiting, of course. There’s no such thing as a late night date, or even an early night date, when you’ve got a ravenous wee beastie to feed before meltdown. Spending time with friends is almost entirely relegated to the weekends, as well, though I can’t in good conscience pretend that I was ever a fan of meeting up socially on a school night.
I’m a creature of habit, so all in all, it’s been a good balance of alone time to family and friends time.
Of course, whenever I settle happily into my routine, something comes along to shake it up. Like, for example, PiC deciding to take JB on a trip without me earlier this year.
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July 11, 2018
Photo by jousi osorio on Unsplash
We are living in particularly stressful times. 2018 is even worse than 2017. GRAND.
I knew things wouldn’t be easy as we got older but as I told a friend, I never fathomed that we could be spending our middle years (ish) fighting the rise of fascism in America.
And even if we weren’t, living as a responsible adult and parent means that stress is a natural part of our lives. We have to have healthy coping mechanisms, and we have to be able to reset to neutral or happy, or we’ll never make it.
Here are a few things I do.
All things in moderation. I have a sweet tooth but the myriad of carbohydrates that would normally take care of it are now out of bounds. Now I rely on a package of Immaculate brand gluten free cookies, bought on sale. I used to think of this as cheating but that was unenlightened me. A lot of the time, I only want a couple of cookies. Mixing up a full batch is just too much trouble, but pulling out two cookies? Perfect. Which leads me to….
3 cookies. 2 for now and 1 for later. I’ve developed a little ritual of baking 3 cookies from my break apart cookies pack once a week when things are particularly tough. Two get eaten with lunch on that day, and the other one is for the next day.
#SweetTooth
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