bipolar-disorder – Stories That Are All True

Daily writing prompt

Share a story about the furthest you’ve ever traveled from home.

Literally, the furthest I’ve traveled from home is Paris. I did not feel at home there because I did not speak the language, but I found unparalleled beauty everywhere in the urban jungle. I particularly liked the Metro’s dedication to typography. Luckily, my dad was with me so I didn’t spend the whole trip unmoored by unfamiliarity. He does speak a bit of French and had been to Paris before so he could lead me around.

I will never forget misreading a menu and accidentally ordering two ice cream sundaes for dessert, then to the amazement of my father, proceeded to take both of them down in stride. I think it was all the walking- my appetite was insatiable at mealtimes. At the Musee D’Orsay, I ate what amounted to an entire duck…. or seemed like it.

We actually got trapped in the Musee D’Orsay for a while because the yellow vests were protesting and they locked down the museum just in case. It didn’t matter, I was lost in the Van Gogh room, looking for signs of Amy Pond (there are none, it was just fun).

I would fly back to Paris just to eat breakfast at McDonalds, strangely enough. The cassis sundae I had was better than anything I’ve had in the US, and the same for silver dollar pancakes with Nutella. Proof that in France, the ice cream machine works……….

Figuratively, the furthest I’ve been from home is this time in my life. I have no idea what I’m doing. My apartment needs to be majorly overhauled and my executive dysfunction is having none of it. I made some progress by doing some laundry yesterday, but I’m going to need help to get everything clean. There’s no way all my blankets are going to fit into our washer and dryer, and it’s becoming the season to need them.

I’m overwhelmed by the prospect that I really do need to apply for disability and get the ball rolling, because my bipolar disorder spinning out three times in 10 years has convinced my cognitive behavioral group this is what’s best for me. I am on board because bipolar disorder is not the only disability I have, it’s just the only one that’s heavily documented.

I was diagnosed with hypotonia at 18 mos old, with no follow ups. I think it might have been a misdiagnosis in the 1970s because the people with CP that I do know say that I walk with the “CP Shuffle.” But whether it’s CP or hypotonia, it creates problems with movement, particularly outside where the sidewalks are uneven. CP could also be responsible for my lack of stereopsis, another disability that causes problems while walking and driving. Things literally come out of nowhere because I can only use my left or my right eye one at a time in terms of focus.

The laundry list of what’s wrong with me and why is starting to add up…. that disability is something I could have gotten at 18 and am now only starting to deal with my disorders because I was masking so hard to cover them.

It’s a journey that’s incredibly far from home if you’ve never taken it. Unmasking can be a kind of freedom, or it can slowly become a prison as people see you more and more differently.

You don’t leave home. You drift.

Daily writing prompt

What are your daily habits?

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When I wrote about this prompt last year, I remember saying that I didn’t have any daily habits. That was 100% true at the time, but now I’m charged with creating a structure with which I can live. My care team at Cognitive Behavioral Health does not think I am ready for a job yet, so I am muddling through what that actually means. Am I disabled for good and should start pursuing government assistance, or am I capable of slowly creating my own recovery into the workforce? My writing does provide a little bit of income, and as I get more popular here and on Medium, I see results. I’ve been a blogger for a very long time, but so far I’ve only had one fan who was so impressed she thought I should be world famous. I would like a few more of those. 😉 But nothing good will happen if I do not take care of myself.

This starts with setting medication reminders in my phone. My day flags if I do not have the correct doses at the right time. I have always been good about taking my medication because I had a doctor tell me that most bipolar patients stop taking their medication when they feel better, not realizing that it’s the medication that’s making them feel that way. However, I was not so on top of it that I remembered to take it at the same time. I’m also on a lot more medication than I used to be……………

I’ll talk about my psychiatric drugs because I think that people need to learn about them. I am not a doctor, just a waiting room that doesn’t suck (thanks, Paul Gilmartin. I stole that line from you). Crazy meds need to be talked about because it’s such a major undertaking to be put on them:

Lamictal (lamotrigine)
- The first time I was put on this mood stabilizer was the first time I knew what it was like to live without depression. It took about six weeks for the fog to lift, but I’d never been more grateful in my life. The only side effect I’ve experienced so far is nausea, and it was very hard to deal with for a long time. Now, I’ve just decided to stay on it regardless of the side effects because other mood stabilizers make my weight balloon. It’s also an old drug now, so it’s relatively cheap if you don’t have insurance.
Lexapro (escitalopram)
- This is the gold standard of SSRIs, and most bipolar people don’t take them. That’s why I think my diagnosis may be wrong, that I actually have autism and not bipolar disorder. In a bipolar patient, SSRIs tend to make them flip out with suicidal ideation, negative/intrusive thoughts, etc. My SSRI keeps me at an even keel when I am really paying attention to my body. As for side effects, I haven’t noticed any of them.
Buspar (buspirone)
- This is what replaced my benzos for anxiety, because it is not related to them and yet performs the same function. It’s better for me because there’s no risk of addiction long term. I do not have an addictive personality, but better safe than sorry. I have been on Klonopin for over 10 years, but my new clinic doesn’t prescribe benzos to anyone. The entire hospital system has put their feet down over it, so I have to adjust. Now that I’ve been on it for several weeks, I am unsure whether it works or not. I will keep you posted. The one thing I do know is that it’s the most important drug for me to take at the same time every day, because it will flat stop working if I miss even one dose.

My crazy meds aren’t the only ones I take, they’re just the most important for keeping my structure stable. It feels like everything is hitting all at once as I age, because I didn’t have to worry about hormone replacement therapy even a year ago.

As an aside, it’s a big joke with my sister that because I’m enby, I thought that if I was going to do hormone replacement therapy, it would be in the other direction…. after that particular doctor’s appointment, I went home and consoled myself by buying both the book and audiobook of “Fried Green Tomatoes at the Whistle Stop Cafe.” I needed some Stress Tabs #10 and some candy bars (but maybe not 11). As it turns out, the book and audio were not enough. I also watched the movie on Prime just to see Kathy Bates… “how do you accidentally run into someone…. how do you accidentally run into someone six times?” I get it now. I’m older and I have more insurance.

My medication is working, and for that I am grateful. Now, my schedule runs from sun up to sun down, skipping the night owl routine altogether. And in fact, when I took my sleeping medication yesterday, the sun wasn’t even fully down yet. I prefer to work in the quiet of the morning, especially on the weekends before the kids in my apartment complex wake. The ones who live above me are particularly loud, which is why I’m glad I have good headphones. I hunker down in my office after a night of wild dreams and try to remember what they are. It provides a writing exercise that’s all my own, propelling me into really thinking about my life and what I want to accomplish. I accomplish nothing without coffee, through which all things are possible.

Coffee is also part of remembering to take my medication, because I have found that a lot of caffeine is just enough to control my ADHD, but Ritalin or Adderrall is too big a jump. I have a coffee machine that makes a cup at a time, and my preferred coffee is Cafe Bustelo. It’s in honor of my old chef, John Kinkaid, because we used to walk to a Cuban restaurant between prep and service for their Cafe Bustelo lattes.

I mentioned in “Why It All Still Hurts” that I was working on a nonprofit, and I am… but that dream has been deferred. Kinkaid was killed in a car accident. I am still reeling from the grief, but I got Kindle Unlimited and added five books on starting a nonprofit to my library. Again, the idea is dinner with dignity, offering the unhoused food they could never afford on their own, and opening my kitchen up to take homeless people on as apprentices if they’d like to learn the trade. I am still sold on this idea, it’s just going to take a lot longer to accomplish than I thought.

That’s because the longer I think about it, the more ideas I have. What if instead of this one nonprofit, we were able to build a library like Oodi in Baltimore? There, I could have my cooking classes and a place to serve food, plus books and maker tools for everyone. My structure these days is centered on how to spend the government’s money for the good of the people. Learning about Oodi and all the services they provide gave me a bigger goal than just “dinner with dignity.” It would give the unhoused a place to go. Maybe my purpose is not to go to Finland, but to bring Finnish ideas to a city that needs them. I want to redirect Maryland’s money from the DC metro area and Annapolis to Baltimore, because it is so underserved. A lot of the city is completely trashed out with no way to fix anything…. or so it seems from an outsider’s perspective that just moved here in December.

I need more time to watch and wait, gathering stakeholders and formatting a business plan. Perhaps my structure will always be internal, because that’s how autists work best. I do not want to go down in history as merely a blogger. I want to create something beautiful that will last and bring hope to people that might not be feeling it that day.

I find that working on giving hope to other people is the easiest way to claim hope for myself. I am slowly building a structure into which I can grow, taking others’ ideas and implementing them like a plant takes root in the soil.

But it all starts with remembering to take my medication.