Control issues and chronic illness

photo credit: Evan McDougall

Five things that are on my mind, inspired by Ashley Story’s blog.

1. Life has been both wonderful (I’ve been able to maintain routines that are good for my mental health) and stressful (several really difficult conversations that hit on almost all of my traumas). Feeling out of control in some areas manifests itself as tighter control — or attempts at tighter control — in others. 

On Thursday, I stayed up past 3am creating and organizing a new shared project management space for Alexa and I, along with a shared private Slack channel for the different types of communication we need to have in order to function in our relationship, as well as within our chosen family structure.

I feel absolutely horribly sorry for people that don’t or aren’t able to have healthy communication with those they’re in relationships with. Relationships are both-ways process, so any one person in a relationship that is doing all the emotional labor is as effective as one hand clapping.

2. I’ve been experiencing an increase in joint pain in my right hand and wrist, and I am right-handed. This kind of pain is a very effective way to stop me doing any of the things I usually do: typing, writing, knitting, folding laundry, using a mouse. 

I re-discovered a stretchy brace that is hook-and-eye adjustable and wraps around my wrist, during one of my recent Organize All The Things!! events. When I wear it, there’s just enough adjustable pressure on my wrist that using my dominant hand is possible again, and usually prevents pain for at least an hour or two. 

3. Accepting my body’s needs and the reality of my various disabilities has been really hard, and I don’t like it.

There has been a radical shift in the way I think about and judge myself — and I already had self-esteem issues — and it’s forced me to look at my environment and my habits and wonder where they are set up to support me as I am, and where they are set up to sabotage me.

Somewhere during organizing and sorting and rethinking my personal, digital, and emotional personal spaces, I let go of the stubbornness that was keeping me from admitting that things I want to do will be easier to do if I stop trying to do them the way that I used to; and so, now I am making small inroads into the spaces that are mine, where I can rest more effectively, ask for help when and where I need it, and where I can work on all the projects that matter to me, without harming myself — or, at least, with less harm.

4. I am doing better at being still physically for a period of time, so that I can heal and/or wait for extra pain meds to start working, but I don’t seem to be able to keep mentally still without a serious dip in my mental health. 

I need things to do, and when my body needs time off from doing things, I need things that require only my mind, and perhaps the speech-to-text function on my phone, although usually that is more ridiculous trouble than it’s worth because I abhor it when I personally have misspelled something or failed to use punctuation in the ways that I understand it to be correct.

To keep myself entertained, distracted, and intellectually stimulated during these down times, I’ve been listening to a lot of podcasts. Which, of course, meant that I needed to re-organize that specific digital space: I gave myself permission to stop subscribing to so many political podcasts because they all raise my blood pressure, which leads to MCAS flares and migraines and extra days of brain fuzz and an inability to get up and do things the way I prefer to do them.

Instead, I’m subscribed to podcasts on topics like true crime, mythology, histories as told by and about people without an American-centric worldview, the paranormal, spirituality, religion from a comparative perspective, and one or two shows that aren’t exactly about current events but also aren’t NOT about current events.

I’ve also been watching more shows on streaming services. Well, more accurately, I’ve been starting shows and then becoming either bored or intellectually offended within the first five minutes or so, and that’s definitely a topic for another essay. A few have made the cut, and none of that is because I’m particularly discerning about media. It’s because I am extremely fucking picky.

Lastly, I logged into the Duolingo website after months of making the owl incredibly disappointed in me, and now I’m getting daily notifications again that it’s time for me to just take five minutes and learn a few goddamn words. Cross your fingers for me that I can do this enough that I get Cheerleader Owl and not Dishonor on Your House Owl.

5. Related to thing number four, I have asked my doctor for advice on how to better manage all the things going on with me: my health issues, my busy life, the stress that is specific to a twelve-plus month custody battle that has cost me a lot of money ($17,000 and counting) and fucked with the relationships I have with each of my kids and with my other family members, running a business, and training on the job to fix Big Problems.

My doctor is understanding, compassionate, and has no problem blurring the lines of the traditional medical model in order to best treat her patients; most of us who see her have the same combination of trans identity (with or without medical assistance or intervention) and EDS/MCAS/POTS.

A little more than two weeks ago, I started an adjusted meds regimen that seems to be working miracles. I’m waiting on an appointment scheduling call from a local therapist that takes my insurance. And, I am finally back to meditating almost every day (my best streak so far is four days in a row, so don’t kid yourself that I am amazing at this).

I forgot how to end a written post, so, uh, here is a favorite webcomic of mine, poorly drawn lines by Reza Farazmand, please enjoy:

Image description: a comic in six panels, two rows of three. Two birds stand over six cashews. The bird on the left says, "Things won't always be this good." The bird on the right says, "This is good?" The bird on the left says "This is incredible." The bird on the left points at the cashews with its wing and says, "Do you know how rare it is to find six cashews?" The bird on the right says, "Very?" The bird on the left says "Fucking incredibly very."
Image description: a comic in six panels, two rows of three. Two birds stand over six cashews. The bird on the left says, “Things won’t always be this good.” The bird on the right says, “This is good?” The bird on the left says “This is incredible.” The bird on the left points at the cashews with its wing and says, “Do you know how rare it is to find six cashews?” The bird on the right says, “Very?” The bird on the left says “Fucking incredibly very.”

You’re welcome.

xox, Nix

Nix Kelley
Nix is a genderqueer person with several chronic illnesses and probably too many projects: among them are Ever On And On, a home for their death doula work; and Anchor & Fox Consulting, a place to support spiritual specialists. Nix is also known as FireHeart, and is training as a Seeker on the Path of Light with Renewal Coven.

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