Miller August & September Update 2024
A quick reveal of John’s TWO-year project:
The Pumish!
(Pumpkin + Fish; we didn’t like Fipkin as much)
This cute glowy creature is for sale. Please message for details.
We've experienced quite a lot, yet at the same time, not much at all.
For most of August and September, we either rested or focused on reorganizing and cleaning the home in preparation for winter. Since we'll be staying indoors for most of the season, we want to have our projects, materials, tools, and space easily accessible—not only for working on them but to get to them as well. Additionally, we're ready to start inviting a few people over, one group per month, since our opportunities for socializing will be limited.
It's quite strange trying to slow life down so we can focus on our own needs. Throughout our lives, we were taught to ignore our needs and focus solely on those around us, constantly pushing ourselves to keep up with everything and everyone. But in doing so, we ended up with severe health issues, repeatedly landing in the hospital. What good does that do anyone? How can we encourage others to take care of themselves if we can’t even recognize our own needs?
There is a difference between stress and burnout. Our normal day-to-day state typically falls into the "stress" category. We've been trying to set aside ONE day a week to be completely free of stress. This year, that day has been Wednesday, as weekends are filled with events and activities. On Wednesdays, we stay home and avoid talking to anyone. However, if we happen to receive a call—like one from Medicaid or Food Stamps about errors with our account—our energy for the day can be drained in seconds.
It's like sitting in a car that’s running, but you can’t turn it off until all the gas is gone. You just sit there in the rumbling vehicle until it 'dies.' Then, you have to rest or sleep and try again in a few hours. Yes, it’s possible to 'train' this out, but after being in this state for more than 20 years, it takes several years of being allowed to "let go" to get there. This also requires a SAFE HOME, which has been difficult to maintain here with maintenance coming up with non-emergency reasons to enter our home.
We're only in year one of recovery, against decades of being kept in a constant state of stress. It's a slow process.
Staying at home more often now. So there’s less of a chance for maintenance to enter without us knowing. This triggered the familiar fear of not having control over our home and feeling like it could be invaded at any moment. They’ve already done this twice, making excuses during our time living here.
We are fighting a lot of outside factors not in our control, so our journey and recovery process is an extremely slow and arduous one.
Just a few months ago, Michelle was discussing with her therapist how she felt "fine." However, as the therapist pointed out, we aren't. Almost every single appointment she's had over the past four years, she's been on the verge of tears—exhausted, in pain, and with a to-do list far too long for even three people to handle.
Our normal state is still in the "Surviving" category, constantly tipping into "Struggling." We've lived a life "In Crisis" for decades, so we're now focusing on trying to stay out of that range in the months and years ahead.
Yes, it may look like we're able to do quite a bit, but that's because we've been able to rest enough or avoid engaging to keep ourselves from falling into crisis mode. However, it doesn't last, as we keep pushing ourselves beyond our physical limits.
We can hit burnout extremely fast and have to slow down to become aware of our broken internal alarms that signal we're approaching collapse. Based on the range shown in the image above, we live at a minimum of Stage 3, 24/7/365. Throughout the entire year, we might have only a handful of days in Stages 2 or 3 and never below. For the past two years, we've been trying to avoid falling into Stages 9–12. Those stages have always taken us out for two weeks to a few months, often resulting in hospital visits, especially since we're below the poverty line and have no means of earning enough to cover our needs due to our health struggles. We cannot "pay" out of situations that arise leaving us various challenges many don't need to face.
Michelle used to hate hearing about the welfare system’s shortcomings or whatever anarchists were saying in the '90s. But living below the poverty level for the past two years has made it clear—the government really doesn’t want you to live comfortably or in a healthy, self-sustaining way. Even if you're disabled, they’ll deny you if you make just a bit too much. For example, we learned that, according to the government, making $1,900 a month for two people is considered "too much." If you try to save up for a down payment on a vehicle, you’ll get penalized for having too much in savings and be kicked off food stamps and Medicaid. Try to pay off your debt, and even that gets used against you!
Michelle has been John's full-time caregiver, and while there's paperwork protecting her pay from being counted against us, it took them three years of submitting paystubs every few months for them to finally tell us this paperwork exists. And now, we’ll have to follow up to get that paperwork they promised to send 2 weeks ago—again. We have to do an ungodly amount of follow-ups for our account, costing us precious time and energy. And money, their mistakes and we pay the loss.
You might think there are plenty of medical professionals and poverty-level resources out there to help people get back on their feet, but there really aren’t enough. We’ve been at the bottom for years and have seen the gaps and holes in the system. Unless someone has personally used these services within the last three months, I wouldn’t trust any advice "through the grapevine." Those stories are usually unique cases tied to the individual sharing them. Anytime we reached out we got emptiness or just no results. Just a shrug and a wave goodbye.
As a professional evaluator once said about Michelle: "You are [both] very capable and intelligent, but your adaptability skills are almost nonexistent." This observation applies to both of us, though it was said during Michelle’s evaluation (John was evaluated later and it was the same for him too). We physically collapse after even minor interactions, the result of decades spent in unsafe environments without any support for emotional regulation.
In addition to experiencing 'burnouts,' we also face 'Autistic Burnouts,' which further explains that professional's comment.
These three images should help give a better sense of what we are dealing with.
What we experience in normal burnout is somewhat different from autistic burnout, though there are many overlaps. However, the causes and which abilities are impacted are more specific in autistic burnout.
The difference between clinical depression (which we also have) and autistic burnout lies in a few key factors, as shown in this image:
For us, the biggest indicator of Autistic Burnout was reducing social demands. This improved our symptoms—such as limiting interactions with cashiers at stores—and the exhaustion and reduction in skills became less frequent. Though we are avid readers and love dense research articles, there are days when even simple words don't process. In fact, just knowing that something is supposed to be a word can give us headaches and leave us in a daze. What's the point of a to-do list if your brain hurts just to remember it exists? (And Michelle loves writing lists—they're EVERYWHERE in our home.)
We often find ourselves on the far end of the burnout spectrum, and that's where we've been for as long as we can remember. Being at rest and doing nothing feels abnormally WEIRD.
On top of that, we have random nights where neither of us can sleep. For example, before this was posted, Michelle had a strong fear of falling asleep. She could feel one spot in her brain creating a block, preventing sleep from settling. Anytime she got sleepy and tried to lie down, as soon as that 'drifting' feeling began, tears would stream down her face, jolting her awake. The only time she can sleep is when extreme exhaustion sets in, and even then, it’s only for an hour or two a day.
As for John, he can go days without sleeping due to his nightmares. When we were first together, he had gone over a week without sleep.
This is what we mean when we state that we do not know what our health will be like that day until the morning of.
At this point, we tend to overexert ourselves because we can't always stay home and rest when we need to. The government keeps messing up our accounts, requiring us to take action, as they can take months to process anything. We overexert ourselves because we've run out of food, barely eaten for the past two days, and HAVE to get groceries. We overexert ourselves because we don't like breaking promises or missing appointments. We overexert ourselves because we were always taught to put other people's wants before our own needs.
I know some people might think we don't care about them because we don't talk or see them for months. In reality, we only have the energy to focus on a few people each month (as friends, maybe 2 people a month). We do care, but we live on a very slow timeline that requires us to constantly monitor our health, often putting everything else on hold.
September extended this pattern a bit longer. Unfortunately, just as we were ready to start getting things done again, we both came down with an illness that kept us bedridden for over two and a half weeks. Even sitting up for 30 minutes would give us a fever and physical pain from the effort of trying to "stay awake and wanting to get something done."
We didn’t accomplish much—not that we could. Even staring at the wall was too much. We're still taking things slow to avoid a relapse. Many of our appointments had to be postponed to October, and that will take up a lot of our time this month.
Oh wait, well after we fix our Medicaid account again. They didn't update our account when we sent our information to them a few weeks ago that they asked for, so it expired.
This happens at least twice a year also postponing our medical appointments.
Now I go into all of that because:
1) that was our main focus in August and September of learning who we are, what we have to work with, and to accept our limitations
2) to give perspective of our struggles versus our accomplishments (as small as some may be)
We will improve in time. But it will take time.
Summary of the past two months:
Recycled egg cartons with construction paper for color. Experiments happening!
In August, Michelle got back into making paper, focusing on cleaning up and using the recycled paper sitting around ready for shredding. We are increasing the number of handmade papers for an upcoming craft with Crafter’s Clique! You’ll get to learn how to bind your own book using these unique circular pages. She also found a few new shapes to create other fun pages to be used for future projects.
Michelle has a few hundred papers sitting waiting for their next steps.
Each batch is about 40 pages every other day as the quickest turnover.
John and Michelle entered their art into The Resource Exchange Art Auction! We are quite proud of our results. Unfortunately, on the day of the showing, we were extremely sick—another year, another missed opportunity. =( Think next year will be our year?
Their theme was "Tree of Life". We each have our "Style" now!
John has created several new pieces of artwork. Focusing mostly on ATC sizes. He's been making a lot more lately and enjoying the vibrant color palette of papers.
Dont' you just love the Calvin and Hobbes one?
While Michelle has been working on her own creations. A lot of little things here and there. Here are a few that were completed.
August’s Crafty Card Collective Artist Trading Card Event had a theme focused on “Positive and Negative Space.” We forgot to take pictures of what people did during the event. One attendee made a very well-made intricate positive and negative space card duo using John's X-acto knives.
John even made a wonderful guide on learning about positive and negative space in artwork! Feel free to download a copy for yourself to use!
Paper Day was on September 7th at Who Gives a SCRAP!, a $5 event where people could enjoy 4 hours of crafting with papers, stickers, and ephemera alongside other crafty folks. You could bring a project you were already working on (like a junk journal or scrapbook) or start a new one there. We hosted our little ATC table by the front door and had the chance to talk to everyone walking in. It started out wonderfully slow during the first hour, allowing us to rest and get adjusted. We began working on a few cards to show what we were doing. We met so many lovely people and shared our excitement for ATCs in the following 3 hours!
We made quite a few cards during this event. Even John made 5 (3 shown above in John's ATC art gallery)! He normally barely finishes one in a 4 hour time period. So we were both very crafty that day.
We had 11 people (not including Michelle or John) attend our crafting fun!
September’s ATC Event didn’t have a specific theme, allowing for a free-for-all crafty buffet! (As John puts it.) We brought out materials people had mentioned wanting to try or revisit but had missed in previous sessions. Michelle completely changed her mind on the original theme planned months ago, and the new choice just fit better—people seemed to really enjoy it! We had five new visitors who joined us whom we talked to earlier in the month, and it was a pleasure to see them again and watch them enjoy creating ATCs.
Thanks again to the Rainy Day Anime store for allowing us to host our monthly Crafty Card Collective there!
We are hearing some very similar comments "These are so cool! I didn't even know these existed!" At least a few times every time we host an event or table. We enjoy sharing the joy of creating~
Cheech came over for a fun paint day and we used up leftover or recycled papers with old paints. Lots of future planning occurred for both Crafter's Clique and OnOurTrail.com partnership to bring crafting to others! These papers will be used for future projects or made into kits. We had fun with it, trying various things and seeing their results.
oh. I just realized none of Cheech's artwork managed to make it into my photos?!
QUICK CAT BREAK!
Sherlock is as adorable as ever, bringing us daily joy with her antics.
Ok, you may continue.
Painted with melted crayon~
We finally made more Top Hat Tom business cards! Michelle decided not to number them anymore, as it took way too much time and energy, especially now that we’re in the late 400s. So now, you can get a pretty handmade card with one of John’s designed stickers if you are lucky enough to snag one!
Michelle is still continuing her 365-Day ATC Art Therapy project and is currently on card 276. For those who aren’t familiar or don’t remember, Michelle and her therapist came up with this project to help communicate her struggles through art. For years, she had difficulty explaining her medical issues to get the help she needed, so art became the primary method to visually express what she’s experiencing.
The rules are simple:
1 card a day within a 24-hour period.
Once the clock hits midnight, the day is over, and you cannot work on the prior day’s card.
One idea per card, preferably without repeating the same thing. Using a different visual to express a new feeling or perspective on the same issue is fine.
You cannot work on more than one card per day (for this project). Extra cards can go in a different binder or IDEA can be saved for the next day (if remembered).
This project presents challenges for various reasons:
Exploring how many ways you can visually explain an experience.
Identifying how many different struggles are being dealt with.
Recognizing that missed days are just as important—whether missed accidentally or on purpose.
Observing the consistency of committing to a year-long project.
Understanding which health concerns are most pressing during the year. Does it reveal any patterns?
So far, Michelle has missed less than 7% of her cards, having completed 277 days of the project. That’s impressive, considering there were only about 3–4 days where she consciously chose to skip due to exhaustion, a few days where she was too tired to work ahead of time (e.g., needing to pass out by 7:30 pm and not waking before midnight), or—most commonly—days where time simply slipped away because her sleep cycle doesn’t follow the solar/lunar cycles.
Michelle is planning to collaborate with her therapist to release a book covering a majority of these cards, hopefully sometime next year.
Overall, we've had quite a hit to our health the past two months, but we’ve done our best with what we’ve got. We still see these months as full of successes and hope that the time invested will pay off in the near future.
Oh and one last thing we did...
We managed to get into Casa Bonita and even have a Founder's Card! John had signed up for their early waitlist a while back, and with his ridiculous luck, he was randomly picked before the waitlist ended. Now they are open for reservations for everyone. Of course, you don’t get the card until you actually purchase your meals ahead of time when you reserve your spot. So, we went with Michelle's family because they could afford it, and they wanted to go too. It was a two-month wait, which for the most exclusive restaurant in the USA, wasn’t bad at all.
It was so much fun, and we encourage everyone to go at least ONCE. Such a fun experience! We were there for 4 hours and still didn't explore half the place. Will have to go again in the future. Also, have you read their history? It's such a wild ride and highly recommend you read how this attraction came to be today! (It's insane!!)
Some Fave Recommendations~
A few items we would love to share and have you try for yourselves~
Not sure if we have mentioned this before, but it deserves another shout-out. We recommend the game Splendor! We got our hands on this game last month and had the chance to play with Michelle’s little sister, Kylie, when she came back from college to visit!
In the game, you start by trying to collect gems that go towards buying properties that produce gems, some of which also have points. These properties can help speed up your future purchases or bring you nobles that add to your final points. It requires a lot of pre-planning and resource management skills. Michelle tends to win most of these games, as pre-planning and management are the only types of games she can excel at. However, in any game that involves luck, John wins hands down. If there is any game with a factor of luck involved, Michelle will always lose, with John coming out on top, no matter who else joins the game.
This is from observing 25+ yrs of our life involving games. Weird isn't it?
Frozen on the left and freeze-dried on the right.
For food, we highly recommend Tru Fru, both the frozen and non-frozen versions of this product. Both are extremely delicious and made with minimal ingredients. We have had to be very careful in choosing our foods lately, as many recipes are changing ingredients without any indication of a changed recipe on their packaging. A lot of those substitutes we cannot stomach, so we are looking for options that are as healthy as possible with minimal ingredients involved. Our health has improved.
[Just to clarify, we are not sponsored and will not gain any affiliate bonuses for recommending these products—we just genuinely like them and want you to enjoy them too!]
Yes she's judging you. But with such a cute face...do you really care?
Thanks for reading! See you next release!
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