Tag: mental health

How to Be a Functional Adult When Your Mind and Body Don’t Want To

danielleshanti

Hello, my name is Danielle, and I am a YouTube addict. I love watching people declutter and organize their closets, turning chaos into something functional and nice. I love watching people mow and trim overgrown yards and sidewalks, turning chaos into something functional and nice. I watch people restore furniture and renovate houses and make food, I watch the Vlogbrothers, I watch people with disabilities share their lives, I watch dance and music. And I do it all sitting down. Or lying down. My mind and body are at rest and there are stories and journeys unlimited to jump into and I could stay there in that cocoon forever and ever amen.

Sometimes I remind myself as I click on one more video that this is my one life. Is this how I want to spend it? Is this video enriching my life in any way beyond passing enjoyment? I know it’s time to close my laptop and do other things. But it’s so hard. I know it’s not just me. I know that it’s a worldwide cultural phenomenon, with the internet in our hands, our heads bent to our phones, scrolling and scrolling and scrolling. I’ve been very careful to not join Instagram or tiktok or whatever else is out there because Facebook and YouTube are already too much. They are almost magical places where we can create our own bubbles of people who love what we love and we can immediately find a site or a video on anything that piques our interest. This kind of internet was unfathomable to me in 2005.

I think about 2005 me sometimes, and not just because I was in my twenties and had more energy and less pain. In 2005, I walked from my apartment to the public library and I logged on to a computer to check my email. I checked my beloved message boards where fans of figure skating and Broadway musicals gathered. Then I logged off and checked out books. Paper ones. Or movies on disc, or CDs! That was the time of listening to every Beatles album and finally hearing Leonard Bernstein’s MASS. Oh, my heart. The way the internet and our lives have changed since then makes my head spin and my heart ache. The internet has been a tool for so much good, for connecting people and making political movements like #metoo and #BlackLivesMatter, and so many others, globally accessible. Accessibility is one of the greatest positives of the internet. I watched Joan Baez dance on her 80th birthday! I saw the original cast of Ragtime share their memories and the cast of The West Wing come together to play trivia and encourage people to vote. These moments brought me joy. 

But my daily consumption of YouTube and Facebook does not typically make my heart sing. 2005 me could not conceive of YouTube and Facebook. 2005 me was reading, journaling, listening to music, and going outside, for goodness’ sake. (And watching a lot of TV and movies, too. Let’s not be too rose-colored about the past.) 

The title of this post is utterly laughable because I don’t know how to be a functional adult when my mind and body don’t want to. We all know what we should do. Of course we know. I know that I should go for a walk and do my PT and eat less sugar and more vegetables and put my phone down and do deep breathing. I have tried to curb my internet addiction. The truth is, I do not want to give up Facebook and YouTube entirely because there is real value in them for me. 

I have tried no phones in bed, no screen time after 9pm, only allowing myself access on one or two days a week, or only after 5pm, or for only thirty minutes a day. All of these self-imposed limits work for a while and then I gradually let them slip away.

Now that I am legitimately middle-aged, only working a few hours a week, and finally back on SSDI (hooray!), I have the kind of time so many people dream of. Everyone out there who’s working full time and raising kids, they wish for some free time to work on labors of love or to rest and read.

But what am I doing with my one life? I am existing. I am tired. Sometimes I take a shower and sometimes I don’t. Some days I cook and do laundry and some days I don’t. Some days I read and listen to music. Some days I don’t. I am not alone in this, and my company isn’t only others with disabilities.

When did we become a society that makes half-serious jokes about earning a sticker for putting on pants? When did “adult” become a verb? Why does everything feel so hard? Not just for those of us with disabilities, but for so many?

I did not create this sticker. I found it here: https://bigmoods.com/products/i-put-on-pants-today-trophy-sticker

I don’t think social media is helping, with its ocean of “morning routines” and “night routines” and “how to be productive” videos. There is literally–and this is the correct use of the word–only one task I consistently complete every day of my life. I brush my teeth. That is it, the single task that is my daily routine. I can almost add one more thing to that list. Since adopting Maddie, I have fed her and scooped her litter box. Because she, through no choice of her own, is dependent on our care, and she needs and deserves food and water and pleasant conditions in which to carry out her bodily functions, I have met those needs out of love and respect for her. But I have not done these tasks every day. On days when I’ve been injured or my knees have been hurting, my husband has taken over. (We need to help out my body by raising the litter boxes off the floor, but we haven’t gotten there yet). 

Meeting the most basic of bodily needs, my own and my cat’s, seems to be what I am capable of. Will this ever get better, or continue to slowly get worse? Even when I successfully avoid endless scrolling, it doesn’t mean I have the energy to complete the tasks required in order for us to stay clothed, and fed, with a clean-enough body and a clean-enough home. 

It’s not that I feel I must be productive. Let’s continue to dispel the idea that one’s productivity is tied to their value as a person. It’s not productivity that I want, but to live a good life, to not feel that I’ve squandered precious time, to live with care and gratitude, to be present, and to nourish and love myself and others.

I love making lists. Yes, I am absolutely one of those people who will write something on the list that I have already completed, just so that I can cross it off. The items on the list might be as simple as taking my vitamins or journaling. Lists are not only for “chores,” but also for self-care. There are so many little things to remember to do every day, even things that I genuinely want to do, or to incorporate into my life, that I just don’t seem to be able to make stick.

My latest method has been the kanban board. This method of project management is not new; there are lots of versions out there, and it can be as simple or as complex as needed. Mine is simply three columns: To Do, Doing, Done. I found a magnetic whiteboard and ordered some magnetic dry-erase rectangles to use in place of sticky notes, and I put it up right next to my desk. The idea was to have the visual there for me, and to have an interactive component (moving the magnets across the columns).

I liked it for a while, but I’ve learned that it works well for some things and not for others. I put things that I want to become part of my everyday life in the To Do column: vitamins, PT, meditation, tapping. (I set up my environment so that I have the time and space to do them, and yet…) I added in other tasks as they came up, like laundry or vacuuming or making phone calls. Then, after the billionth time I kicked some of the clutter under my desk, I added “Hang art on the walls,” and “list XYZ on Buy Nothing.”  There are big and little, short- and long-term to dos, like taking old medication to the drop-box at the pharmacy and getting caught up with printing photos and putting them into albums. Or writing a blog post and updating a website. Soon the To Do column was full and daily goals were next to long-term, procrastinator-extraordinaire projects. I stopped moving the magnets over and went back to paper lists. I look at the board guiltily. I still have not updated my website. 

Having things that I theoretically want to do mixed with things I’m actively avoiding, well, that didn’t work. Or was it the smaller daily goals mixed with the big long-term projects that didn’t work for my brain? A week ago, I got fed up with myself wasting time on YouTube, as I sat right next to my kanban board that was reminding me that I still hadn’t done any stretching or meditating that day.

These aren’t all chores, I reminded myself. These are actions my body and my mind need, and I can’t expect to ever feel any different if I don’t at least try to be consistent with at least some of them. I needed this shift in my perspective. So I created something like a kanban board, but with self-care as its only focus. True tasks, different from self-care, will go on short-term and long-term paper lists somewhere else. I find pleasure in writing with a pencil on paper, and crossing items off lists, so I’m going to keep doing that.

I’d tell you that the picture below is the rough prototype, but I’ve never been into crafting, and I’m trying to let go of perfectionism, so here we have the new system, laid right atop the old one.

The three sections are Body, Mind, and Soul. I want to stretch and do breathing and tapping and meditation. I want to journal and listen to music and put my bare feet in the grass. But often I do none of these things. I’ve learned so many kinds of mindful breathing! Just do one. So I’m trying to see if I can get myself to do just one thing (or two?) for each part of myself each day. 

If I simultaneously take the pressure off myself to do all the things every day, and also provide the visual reminder–Why, yes it would be nice to do some journaling today–maybe I’ll be more likely to do some of the things, some of the time?

Furthermore, I have once again reinstated the “YouTube only on Fridays” rule, and the “For the love of sanity, don’t click on Facebook every hour of every day” rule. We’ll see how long it works this time. Scratch that, it sounds a bit self-defeating. What I mean is “Good job, me, for setting realistic goals, for switching things up, and for trying again.”

Trying again is all we’ve got really.

Happy New Year? 

danielleshanti

I’d love to be able to write that since October, there’s been much progress and improvement on fronts cerebral palsy– and mold-related. But I am not able to write such things.

With the mold, we had been waiting, waiting for results and estimates. We got the mold culture back later in October. The culture was taken from the original dust sample, and then it took a while to see what was still active and growing in that sample. Out of all the scary oranges and reds on our ERMI (see previous post), there were only five active molds in the culture. And the alarming “black mold” was not one of them. So we don’t have any active black mold, but there’s still lots of old black mold spores that need to be cleaned out of our house. At least, that’s what I gathered from the whole thing.

After the culture, we then had “Pathways” testing done. Rather than have someone come and start pulling up baseboards and just look for the mold, we had the whole interior perimeter of our house sampled (and around windows) to see where the mold might be coming from in a nondestructive way. We found, unsurprisingly, that there’s a strong indication for mold under our sink/dishwasher, and around our skylight, as well as a couple other odd places. (Even though we’ve not seen water damage it doesn’t mean it isn’t there.) But since then in early December, we’ve made no progress. We are still waiting for the remediation company to give us an estimate based on the Pathways results. Should be any day now.

We have been advised that our original 1980s skylight will need to be replaced once remediation is complete. Did you know that no one makes ten-foot skylights anymore? No? Neither did we. We have one long, narrow skylight above our front door. Lots of light. Lots of trouble. We are going to have to put in two or three smaller ones, in place of the big one. That just means more potential for leaking skylights in the future, though. Skylights are notorious for leading to water damage. One smaller one, and close up the extra space? We could close it up altogether, but we do like the light. I do not enjoy this part of adulting/home ownership.

I do very much want to get the mold dealt with so that I can see if I will indeed start feeling less sick. I’m so tired all the time. Exhausted by the throat pain, like I have strep throat every day of my life, tired of my forearms and my hands hurting. These aren’t CP things, so I need them to be mold things. I want CIRS to be what’s happening, because that means I have a chance of someday feeling better than this.

On the cerebral palsy front, I had been waiting on a referral to UC Davis to see a pediatric orthopedic surgeon who is familiar with both (younger) patients with cerebral palsy, and open surgery techniques in case that is what my hip was going to need. Eventually, I received a letter from UC Davis turning down my referral. I’ve never been given a flat-out no like that. They said they just don’t have the time/doctors. I let my doctor know, and they said they’d keep looking for other options for me. But, I didn’t hear anything.

I recalled that from my own research, there are two places I know of in the United States that specifically state that they work with adults with CP: the Weinberg Cerebral Palsy Center in New York and the Center for Cerebral Palsy at UCLA. They hold two clinics weekly and one of them is a “lifespan clinic,” meaning that they see adults.

It sounded very fancy and hard to get into. I filled out the online form and was never contacted. So I had my doctor send a referral and was never contacted. Then I called the number and it was the general UCLA Health number (“If this is a medical emergency, hang up and dial 9-1-1. If you are calling about COVID testing…”). Eventually, I stumbled upon the right number to make an appointment. I thought it might be months away, especially given that the clinic is only held weekly. But I got an appointment for February 16th. Hooray! The man on the phone gave me the address and parking information and asked if I had any questions. I asked how long the appointment would be.

“They’re usually about fifteen minutes.”

“Fifteen minutes?” I repeated, shocked. This world-renowned cerebral palsy clinic, where you’re fully evaluated and referred to any number of specialists goes by the same maddenly inadequate fifteen-minute increments as a regular doctor’s appointment? “This is for the adult cerebral palsy clinic?” I clarified.

I was assured that yes, it was, and that was that.

So, we are now making a six- (seven, eight, who knows) hour drive to Santa Monica and staying overnight for a morning doctor’s appointment that might only last fifteen minutes. What, then, am I hoping is the outcome? I am hoping, at the very least, that this doctor will be able to refer me to someone who is experienced in doing labral tear and FAI repair on someone with cerebral palsy. Maybe somewhere closer to us than LA, like UCSF. I’d also like someone to care and understand and listen and not just suggest a new pain medication, but that is asking too much in this culture.

So, I am still struggling, in all areas of my life, as I know so many of us are. I am still making some efforts to stretch and exercise. Occasionally, I even put on my ExoSyms. I had been trying, through November and December, to put them on and practice more regularly like I had been before the labral tear. But when I do, then it hurts more for days afterward. I think I am just not in a place mentally or physically to use them right now. I want to return to them someday soon, but just now, I’m putting what little energy I have into, you know, basic functioning.

I am reading The Book of Joy and using its accompanying gratitude journal. I am trying to meditate regularly, but not succeeding. I’m also looking into calming the vagus nerve, and I think it’s amazing and weird that a nerve can affect so much of the body and mind. 

Caring for mental health is always important, and it’s even more vital when physical health feels so precarious. Do what you can to take care of yourselves, everyone. I’ll be here, trying to do the same.