I had several revelations this week. The first one happened when we went to Ohio Renaissance Festival. I’m not fond of crowds, feeling crowded, too much noise that I can’t filter, and overall loud people in small spaces. I once got a migraine back in college at a store in one of the malls that was so full of circular racks it was hard to move anywhere. When we went on our road trip back in 2015 and I got sick between Portland and Arcata, CA, that illness exacerbated my sensory issues that I didn’t realize were sensory issues back then. We found a place to eat dinner but it was a wide open space that was full of not only students at Humboldt, but older locals who live and work there. There was so much going on, the light was dim, I had a hard time reading the menu, and I really just wanted to crawl into bed. Every minute that passed, the internal buzzing intensified until I felt I was going to explode. Chaz saw how it became painful and as soon as we were done, we got out and it was like releasing built up pressure as soon as we were away. I was still sick though.
Being able to filter out conversations and focus on doing a thing or another conversation became something I had to force myself to do when sharing an office with other people and not enough buffers between us like a modular wall. Whether it was my-coworkers having at least two different conversations going on or one conversation and several on the phone with clients, service providers, state social workers, or Kentucky’s Medicaid gatekeepers. I was less inclined to eavesdrop so I could focus on meeting my own deadlines and getting as much done on my task list before leaving for the day. At one point I was going in an hour to an hour and a half earlier than everyone else just to be able to get as much done with no one else there and have music playing in the background to keep me going. If I could’ve, I would’ve used headphones to listen to music the entire time I was in the office but there was that pesky telephone of mine that I had to listen for.
Back home, we have big street festivals called Ho’olaule’a. Waikīkī is the biggest of them, blocking the main drag of Kalākaua Avenue for entertainment stages and vendors. People at the stages generally stay in the street, but because it felt like the entire island was there, there are areas where you have to squeeze through the crowd on the sidewalk to get where you’re going. I didn’t go every often because the crowds were too much for me and Waikīkī is one of the last places I would want to have a meltdown (not that I realized that’s what they were back then).
When I went to Bonnaroo with Chaz and two of our friends (the three of them had gone together in previous years. I always looked for a spot that I knew wouldn’t get crowded at every stage we went to. That’s how much I try to avoid crowds in crowds. And I’m pretty sure this is why I dislike General Admission only shows where there is no seating and shows where people crowd into the seats that aren’t theirs. I end up getting surrounded, the buzzing starts, and I hyperfixate on the people crowding me instead of enjoying the music.
So, there we were at OHR in the 3 Fools Pub, me eating smoked turkey with relish on it (because there were no sides or veg at that vendor that were safe for me), listening to Pirate’s Creed at the edge of the pub where people were passing by behind me and everyone inside was clapping, stomping, and yelling along. I thought that I should probably prepare myself to leave when I knew it would be coming. But. BUT. I sat for a minute and really paid attention to my body. All was calm. CALM. I should’ve at least had a low level buzzing. I’m not saying I like crowds now, but having Adderall on board made it more tolerable. There was a point in a shop that had very little room to move in the first place and people were just standing, not really looking, just standing and I was stuck. Brain kicked in and screamed, OUT. Which I did after saying “excuse me” to everyone literally standing between me and outside. Without Adderall, it likely would’ve been worse and strangers would’ve thought I was rude.
My next revelation yesterday after a perfect storm of things I couldn’t control in a short period of time—an order arrived that was missing things and my attempt to contact the seller with their link was just me talking to an AI thinking I was asking a hardware question and then finding out another order was delivered around noon (which was hours before) but there was no box—spending an hour dealing with those two issues and trying to do ALL THE THINGS to fix them at once because I knew I’d forget if I didn’t, being 60 words away from my daily word count goal with dinner closing in as this happened, hormones going bonkers before my period starts (hormone changes affects our neurodivergence), and being late taking my afternoon Adderall because I forgot to reset my timer after my midday dose. I was melting down. Big time. As mentioned, I was trying to do all the things while worrying about my writing and dinner and Brain screaming, GO CRY, all at the same time. With everything going on at once in my head, it was hard to do anything at all. I got up from my desk and went out to the living room to cry but tried calling the charity that picked up donations that morning in case they accidentally picked up the boxes…but I hung up since I knew they were there before the order was delivered. Returned to my desk still frazzled and absolutely paralyzed by too much in my head going on simultaneously—like having multiple TVs on at once with different shows and no matter how hard you try you can’t focus on one and tune everything else out to take care of the first thing. That’s when I looked at the clock and realized I was late for my Adderall. That turned out to be the first thing. Then I did the next thing and the next thing and the next thing. By the time I was done I decided I wasn’t going to cook dinner. I told Chaz I needed to eat my feelings. What I realized later was, I needed the foods that were going to give me a good dopamine fix—burger (lettuce wrapped), fries, and a chocolate peanut butter shake that took me back to the KC Drive-Inn days—Waffle Hot Dog and an Ono Ono Shake with chocolate. Once I was done with the things, I focused on those last 60 words and getting to a place where I felt comfortable enough to stop for the day.
Later, as I was brain dumping in my Morning Journal I had another revelation. When I get overwhelmed like that it’s not that I can’t keep my composure as I order through everything and do it—if I was still working in a psychiatric residential treatment setting, I could. External controls had me able to do a 1 second freak out internally and then jump into doing what needed doing. I was very good at assessing the environment in a crisis quickly and deciding what needs to happen first, next, potential backup next, potential second backup next, and on and on. But there are no external controls for me anymore. It’s all on me. What it is is that I can’t keep my composure because my brain is short circuiting 24/7 and only dopamine can fix it short-term before I need more again. It’s wild to realize all these moments I’ve had before where I felt like I was about to break social norms because I couldn’t keep it together, that I was somehow defective because I lacked “control” and “patience” and blah blah blah…I think my fellow Neurodivergents know what I’m talking about. But no, they were true neurodivergent meltdowns that I cannot control. None of us can. It’s like expecting someone with a tic disorder to control their bodies to prevent tics. That’s not how it works and society needs to accept that their precious norms are ableist. Honestly, I’m done masking and pretending. I’m not going to do it anymore. It got me nowhere for decades and I was punished/abused for my neurodivergent traits—it’s a stunning eye opener to realize that and maybe even if I had been diagnosed sooner, adults and my emotionally abusive ex would’ve still acted as they had while telling me I couldn’t keep using my neurodivergence as an excuse.
For those of you not familiar with what dopamine has to do with neurodivergent brains, it’s the neurotransmitter that not only helps us feel pleasure, but how we think and plan as well. It’s not that we don’t make enough of it, we do. It’s that the dopamine we have is as ADHD as we are. It works like this: Dopamine Ships need to make it to the Dopamine Harbors for everything to run smoothing. The problem is our Dopamine Ships space out and miss the Dopamine Harbors disrupting what our nerves are able to transmit between each other.
I don’t know what next week will bring, but avoiding another meltdown like yesterday would be nice.
I can’t pinpoint exactly where I realized I had undiagnosed ADHD but I can tell you a few things that kept leading me on this current path. Some years ago I got really frustrated with people being judged for being on their smartphones, especially when it was being used to call people “addicted.” It was around that time I learned about masking, a term that wasn’t used in either agency I worked for when I worked in the mental health field. It clicked that maybe I’ve masked my whole life which is why I tricked myself into thinking I didn’t have it. Then I realized, what if smartphones were actually taking that mask off for us. Have you heard the saying that we carry a computer around in our pocket. I carry an endless supply of dopamine hits.
I think it was 2018, I was at my integrative doctor for my monthly acupuncture at the beginning of December (it was the first week) and I’m on the table with a cloth gown on as she’s sticking needles in where she feels I need it. She always asks about what I’m currently writing, if I’ve done anything fun lately/have any fun plans for the weekend, and what I’m reading (because I always have a book with me). Because it was holiday season she happened to ask, “Are you ready for Christmas yet?” She was surprised when I said yes—tree was up and decorated and all the presents that needed to be mailed were wrapped and sent—and with genuine interest asked how I did it. “Panic.” She paused and looked at me with concern. I was rather shocked myself. It just came out of my mouth, but it was the truth. I had a plan in my bullet journal:
Day 1: rearrange living room, vacuum, get out tree and decorations, set up tree.
Day 2: decorate tree
Day 3: wrap presents
Day 4: box presents, create labels, set pick up date for boxes
Day 5: tape up and affix shipping labels to boxes, set boxes by the door
Day 6: set out boxes for pick up
That’s how my preparations usually go. I break everything up into manageable pieces, including housework. I don’t have a cleaning day. Every chore has a different day. Deep cleaning the kitchen gets broken down into several days. I don’t know how it happened but something in my brain went off and a real panic mode set in and I had to do everything NOW. And yes, it was early. My bestie is Jewish and her son’s birthday is before Christmas. So if I have to get all their stuff out before Chanukah I might as well get everyone’s done at the same time.
The shock of my answer stuck with me and all the memes and TikTok videos I’ve seen since then pointed with giant flashing arrows to ADHD, but I kept forgetting to ask my doctor if she knew anyone who does evals for ADHD.
Then the pandemic came, Chaz began working from home before Ohio locked down, and I settled into a nice little routine. I wasn’t getting everything done but I finally finished Tainted Love and sent it to my editor and was spending time in the morning on our lanai, reading and drinking my morning coffee before going for a walk and then fixing breakfast. When fall rolled around and it became too cold for me to sit outside, everything pretty much fell apart. And then (yes, there’s more), I sprained my ankle so bad it took months to recover and during that time, I kept it elevated as much as possible. That means I wasn’t doing anything but reading and binge-watching shows and movies.
When I returned to seeing doctors after getting fully vaccinated in March, my integrative doctor wanted to do a full set of lab work because this is the year I turn 50. Fast forward a couple of months and I’m sitting with her reviewing the results of the labs and she asks at the end, “Do you have any questions?”
“Yes! Do you know anyone who does ADHD evals?”
“You weren’t tested for it in school?”
I shrugged. “No one was looking at girls back in the 70s for ADHD.”
It was July before I was in my therapist’s office for the first consultation. I already had a conversation with the intake coordinator about why I felt I needed an evaluation and filled out several questionnaires for the therapist before that session. My biggest complaint was difficulty getting started in the morning. I would sit for hours trying to get myself going and nothing. If it weren’t for the meds I need to manage my MCAS in the morning, it would’ve been me not getting out of bed for hours. It wasn’t until after I felt the caffeine had kicked in that my brain would finally sputter and chug along like an old car on its last legs. I had difficulty organizing my mise en place for dinner and actually getting to where I could get into the kitchen to do mise en place, like there was a baby gate around my brain that fenced me in place. To compensate, I would start mise en place when I’d go in for a drink (it would end up being just one of many side quests in that particular moment): get out everything I need that’s non-perishable, if it was an hour or under before dinner should be ready, I’d get out everything. And with all that, I’d still miss things and not realize it until after I was done or in the middle when it was too late. If I was really lucky, I’d catch it before it was too late. To go along with the disorganization, I’ve been using a bullet journal for years. When I was still working in mental health, I used a planner and had a spiral bound journal I kept in my purse for lists and whatnot. Little did I know the latter would be called a bullet journal years later. So now, here I am using a bullet journal as a planner because random lists on notepads and Post-Its weren’t cutting it anymore. But was I really using it? I used to just do weeklies but it wasn’t working for me. I had already gotten rid of using a habit tracker because seeing it mostly empty was deflating and separating weekly chores from daily chores threw me into that panic mindset of “get all the weekly stuff done as fast as you can.” So that’s when I wound up assigning them days. I’m not constantly thinking, “do the vacuuming, get it done, you need to get it done. now do the windows, come on, do the windows.” But doing that meant I’d run out of the room some days, so then I switched to making dailies each week. This gave me a full page for my lists, any notes (usually of the medical variety), decorative stickers, and memory keeping. Even with all that, I would go days without checking it and when I would check, I would find I forgot something.
Back to the food/meal prep for a minute. Up until Celiac reared its head, I would grocery shop without a plan. Maybe an idea of what I wanted. If I did a list, I would forget to put something on it or I’d miss something on the list which meant many cross store trips to back for the thing if I was with it enough to notice. I don’t remember exactly how I started meal planning other than choosing what I wanted to eat ahead of time and then making the list, but I know I did it out of necessity because gluten would put me out for days. This is where I started to break down my lists into the store areas: protein, produce, packaged, dairy, and non(-food). I rarely buy non-food items at the grocery store now so if I need something it now goes under packaged and so does dairy because that’s a rarity these days too. When my doctor went over my labs with me, my A1C was borderline and my cholesterol was out of balance (but total is fine). She was very optimistic with the goals she set for me. And by optimistic I mean they felt like a fantasy. I was lucky if I could get myself to walk twice a week and I didn’t know then that it was ADHD related. The dietary changes she suggested were overwhelming. This is me talking. The one who has had to face so many food challenges that I’ve learned how to adapt easily. This time was worse than when she had me do the histamine elimination. The struggle felt like a windup toy that ran into a barrier, popped back, and ran into it again. Rinse. Repeat. In a moment of frustration, posted on FB that the low-glycemic food lists don’t include much non-Western foods. In came Cheryl like a unicorn riding a rainbow telling me the Plate Method (1/4 protein, 1/4 starch, 1/2 non-starch veg) is easier to use when it comes to non-Western foods. It unlocked a bank vault door. Everything became easier in an instant. Then I met with the dietician in my doc’s office and she liked what she saw in my food diary. The only thing she wanted me to do was use more coconut sugar and maple syrup instead of refined sugar and as much non-processed as I can. Basically old habits I got out of. She also told me about resistant starch, how the starch in rice and whole potatoes changes went they are refrigerated after cooking. This is one Asian used to cold rice. But snacking is my weakness. I will feel hungry and not be able to think about anything else or focus on my task once I think about being hungry and a snack. Hyperfixation, anyone? It’s also sensory. I can cut up all kinds of veg to have ready in the fridge and they still won’t be eaten because I will still want something after eating them. Years I ago I would get cravings for a specific food and it wouldn’t go away until I somehow appeased it. Apple pie? Make fried apples. No, eating an apple won’t do and I never really liked eating an apple whole but did because I was “supposed to.” But a mountain apple? Yeah. I’d eat those all day right off the tree. There were also times I’d be eating something and in the middle of chewing I’d want to spit it out and not eat the rest. I learned this is an ADHD thing. Or if something needed a lot of chewing, I didn’t want it anymore even if I liked it. I always thought I was weird for this but it’s totally normal for us neurodivergents.
My eval with the psychiatrist was scheduled for August but a week and a half before, I got a call that something came up and it had to be rescheduled, but it wouldn’t be until October. I was on my way home from my monthly acupuncture and pulled into a movie theater parking lot while talking to the person. I rescheduled with her and then sat there stunned after I hung up. I was looking forward to the appointment ever since my therapist said she thought I’d benefit from meds. I was getting little dopamine hits from that excitement. Then, POOF. It was gone. I wasn’t sure how I was going to make it another 2 months. I knew I would. I survived this long without ADHD meds, I knew I was capable of making it. But “survived” is the key there. I’ve merely “survived” for nearly 50 years. All the struggles in school with daydreaming/spacing, difficulty staying focused, difficulty keeping up with lectures and taking the right notes, not being able to copy things from the overhead projector fast enough before the professor changed it (1) I couldn’t remember enough at one time to write out big chunks at a time so I had to keep looking up and 2) what they were saying while I was copying would crash into each other like a surfer and their surfboard in wipeout while being thrashed by a set of waves), having to reread entire pages because something didn’t process (I still standby my opinion that my Social Psych professor was a terrible writer and her books we were forced to buy for her class were repetitive, but), math being taught in abstracts (algebra and geometry—don’t get me started, I won’t stop) but it clicked in classes like Chemistry, and the struggle meals before I knew there was a name for them (I could do an entire post on struggle meals). That’s not even a comprehensive list of the difficulties in school and college. The way I am and feel on meds right now, I could’ve thrived in educational settings and having undiagnosed ADHD is probably why I disliked school so much but could never explain why.
I got an unexpected call from my therapist a few weeks later. My psychiatrist had 2 slots open up sooner. Folks, I’m not kidding when I say I almost screamed. It was with glee that I scheduled a 9am Saturday appointment. Yes. 9am on the weekend. It was virtual so I didn’t have to get up my usual 2 hours before (to compensate for any time that I spend with fighting executive dysfunction and ADHD paralysis) and I wanted her to see me uncaffeinated in all my executive dsyfunctioning glory.
The morning of the eval I realized I had no idea what to expect and I was worried about technical difficulties with the virtual appointment. I was in my writing cave early, setting up my phone. In all, I think she asked me questions for 20-25 minutes–I forgot to check the time on it. One thing my therapist did was make sure I was paired with this particular psychiatrist who is also a neurologist and takes everything into account like functional medical doctors do. So, this means she understands my overflowing basket of chronic illnesses and we went through all of that. She settled on Adderall, having me take 2.5mg (breaking a 5mg in half) in the morning and 4 hours later for the first two days and then upped it to 5mg each time. Her first concern was that the fillers in the Adderall not trigger my mast cells—because there is nothing worse than your body treating something you need like it’s at war with an enemy (currently it’s warring with water, I hate it here).
Let. Me. Tell. You.
I fucking love it.
With my work experience and personal experience with medication, I know full well not to expect results right away. I know that sometimes we start with a med that isn’t the right one for us so we try something different or up the dose. I know that I might start with something that my mast cells are okay with and then a few days later it’s an all out revolt inside.
That didn’t happen though. And I’m damned lucky. And thankful.
On Day 1 I was able to interrupt a task (checking email) to take care of the laundry as soon as the dryer went off, then went right back to my task. This means, I got up when I heard the dryer go off and didn’t say to myself, “empty your inbox first, then get it” which would normally lead to me hyperfixating and forgetting I was supposed to take care of the laundry; AND I didn’t do a bunch of side quests while taking care of the laundry. Then, while switching over loads later on, I remembered I wanted to put up a Command hook in the kitchen for my aprons to increase the chances I use them (because object permanence is also an ADHD thing, if we don’t see it we forget about it). I interrupted my task, got the package of Command hooks in the hall closet and then went right back to switching over the laundry. And now I have my aprons hanging in my kitchen after I don’t even remember how long of “I should do this” running in my head. Several times during the day, I remembered I forgot to get a Vitamin Water while I was up as soon as I sat down. Popped right back up to get it without the usual negative self-talk that usually happens a minute later when I finally remember I forgot something. While posting this news on FB I forgot the “trap” part of “lint trap.” Normally, when my brain won’t hand over the word I want and makes me play hide and seek for it, it takes a long time to find it, if I find it at all. It really sucks as writer, especially since I know I have a large vocabulary. But as I was typing on my phone and hit that block I didn’t even try to look and intended to type “thing” knowing my friends would get what I was talking about. As soon as I made that decision, Brain handed over “trap.” I sat there thinking, “SORCERY!” Honestly, I thought that a lot those first few days. Because, wow. No wonder neurotypicals think it’s so easy to do things, stay focused, remember things, get organized, stop snacking/make better snack choices, etc. They aren’t constantly fighting their brains so it IS easy, but it has nothing to do with willpower. I opened up packages that came in that day, unpacked them, put the items away, and broke down the packaging to put in the recycling or trash. That doesn’t happen either. Packages will pile up, a mix of opened or unopened, until I finally unpack them all. I might or might not put the items away, sometimes they sit a pile until I do a declutter later. I might break down the boxes or I might put them near our recycling bin to break down later. I wrote that first day for the first time in what felt like forever. Ever since publishing Tainted Love, I haven’t been able to write. I’d open up Scrivener and just stare, like a car with a dead battery that won’t even attempt to turn over when starting the car. I didn’t just write either. I made my word count goal without taking all day. I was able to Google something for the story or check notifications on FB or Twitter and go back to Scrivener without falling down dozens of rabbit holes for hours.
Day 2 was a little more of a struggle. Day 1, I had some heart palpitations and I realized that it was likely the Adderall + my usual caffeine consumption, so I told myself to cut back on the caffeine. What I did was not have any caffeine at all—unintentionally—and so Brain decided to fuck with me at every opportunity. I still got things done, even writing, but I found myself fighting Brain more than I did on Day 1. Then, before I needed to start dinner, I needed a transition activity. Day 1 was a Sunday and Chaz cooks on the weekend and I didn’t need a transition activity to appease Brain before moving on to the next thing—that’s pretty significant too, the time I have now that I’m not needing that transition time between everything. But on Day 2, I wound up hyperfixating on the transition and started dinner late, missed prepping something and missed getting a few things out while doing mise en place. It was like I spent all day building a castle out of blocks around Brain and then Brain imploded and the blocks collapsed. I’m used to Brain imploding but I didn’t like that it happened after a productive day, even if I had to struggle for it.
Day 3 was the first day on the full dose. I noticed my chronic pain levels were down. On a good day, I’m Whistler or Rembrandt. Now, I’m down to Vermeer. After posting this on FB and Twitter and having someone on Twitter tell me their endometriosis pain decreased after starting Adderall, I went and Googled it. Turns out the stimulants are catecholamines which have analgesic properties. WHO KNEW? A happy side effect. This decreased chronic pain means I’m taking walks more often. No such luck in my period pain decreasing, but.
Day 4 included a follow up with my therapist by phone. I typed out everything I wanted to tell her beforehand, because I didn’t want to miss anything. To address things falling apart before dinner, because that’s when the midday dose of Adderall peters out, she had me start an afternoon dose. It was up to me to choose between 2.5mg or 5mg. I went with 2.5mg. Another huge difference. Dinner preparation went much better and I was able to pay full attention to the entire episode of What If? that we watched that night without picking up a device or a book.
I’ve been writing daily (yes, writers work weekends) and making my word count goal each day. I’ve toyed with increasing my word count goal but I’m going to keep it where it is for now since I’m using my reclaimed time to do extra chores and projects that have been put off for too long.
Later that first week was when I noticed the connection between hyperfixation and snacking. During the day if my stomach grunts its displeasure, I can acknowledge it and then keep on with what I’m doing. However, once the Adderall is out of my system. I can’t stop thinking about it until I have a snack in my mouth. I used to think it was weird that I would get specific cravings and couldn’t stop thinking about it until it satisfied with either the thing I’m craving or a close enough approximation. Now it all makes sense to me.
The start of Week 2 on Adderall came with a happy accident. I got up that day and told myself to do all the household tasks first and then get on the computer to check email and write while listening to the last day of MAM Fest. FOLKS. What. Is. This? It seems so simple, yeah? Do everything that requires moving around in one chunk of your day and do the sitting tasks in another. But if you’re neurotypical you need to understand that our brains don’t work this way. I see a list and there’s a big neon sign over it: DO ALL THE THINGS NOW. Which is why breaking down tasks into do this sometime this week and do this daily didn’t work. I wanted it all complete and that tracker fully filled ASAP. It’s like a short circuit in Brain got fixed. So now I finally have a routine again that works, that is flexible if I have appointments or something comes up, and doesn’t have me constantly trying to multi-task to get it all done. In another follow-up with my therapist, I told her about this breakthrough and she asked if I thought I could’ve figured out the new routine without Adderall. My answer was, “No. I’ve been trying to figure one out for nearly a year and never got it until now.”
That week I also noticed Brain is quieter at night because I’m getting everything done during the day. Not completely quiet. There’s still the running list of things to do the next day and in the future even though all of that is written down. The difference is the things that didn’t get done that day aren’t added in the mix with me telling myself to just do it and Brain throwing out a roadblock.
It’s a weird feeling of having half to sometimes mostly unfinished tasks lists daily (I use the Franklin-Covey key because I used their planners for so long) to now seeing everything with a check next to it, and in the case of things like working on my next book, a dot to show I worked on it and it’s still in progress. Monday I had a long list of things and in between my first and second dose I got so much done that when my friend Angelina asked everyone on FB what we were up to, I listed off everything I had already done and what I was about to do. According to her, I won Monday.
I. Won. Monday.
Other than all the personal wins, the best outcome of my evaluation is that in being open with my friends about it, those who have thought they have ADHD too are now in the middle of their own evaluation or looking for a provider to get one.
If you are struggling and think you have ADHD and have the resources/access, get that evaluation. It may take a few medication changes to find the right one for you but it’s worth it. It’s worth being able to go through the day without being in a constant battle with your brain; without feeling like you have ten tabs open in your browser and nothing will load even though nothing is wrong with your internet connection or router; without feeling like a cat that never sleeps lives in your head and bats around their favorite toy non-stop. We don’t have to be so tired all the time just from that internal struggle. We can live a full life and really thrive.
If you’re still on the fence or just now climbing onto the fence, here are some TikTokkers and FB pages I love: