Everybody has an evil little voice in their head that tells them they’re a piece of shit, or that something nice that happened to them was really sinister, or a good friend is out to get them. Many people name their evil little voice. I never have, but lately I’ve been thinking “anaconda” or “Brenda.” Mainly because my anaconda don’t want none unless you’ve got buns hun, and Brenda sounds like an annoying girl name. Like the Karen memes, but for a 14 year old. A blonde, cluelessly destructive 14 year old.
My Brenda anaconda (this is getting weird I know) likes to distort memories. Sometimes I wake up in the morning and she is flat out screaming at me that I am a horrible person and I should just… well… not deserve to live and I am an idiotic piece of shit how dare I take up space?
Brenda is not fun and she is basically a dick.
Brenda’s anaconda likes to blame other people and bite me into becoming a victim which is way not cool because other people have their own damn lives and I am a fucking person too.
So fuck off, Brenda. I don’t want none of your anaconda. CONSENT BITCH.
My psych meds are literally killing me… and I can’t get off of them. Yet.
I have medically-induced lupus, which can be cured once the person is off the medication that is the culprit. However, each time I’ve tried to taper off, something insane has happened. Running away from home, suicidal ideation. I miss the days of binge shopping. It was a bad habit but much more harmless than sneaking off in the middle of the night to try to make it to Marfa.
Recently I talked to a family friend of my dad’s who is around my age. We played together as little kids (think preschool), but I never really hung out with him. He was accepted to Stanford and moved out to California. I knew a little bit of his mental health struggles, and I was desperate to find a way to get through grad school. Because I knew he did it, I called him up and we had a long conversation. I was probably too negative and stole his vibes, but he was kind to me and talked about tapering off meds and healing. It was a bit of an awkward conversation due to us not really being friends for 20 years, I’m sure, but he handled it well.
He suggested I go on a retreat into the desert while I went off the medications, once I had a plan in place. Which sounds really cool but also scary to me, considering how wild I get during withdrawals.
After our conversation I did some research and discovered The Withdrawal Project, a non profit, pharmacist-vetted, FDA approved resource dedicated to guiding those withdrawing from psych meds. I also reached out to a research neurologist who had previously said she would refer me to a research psychiatrist at the medical school.
I have had fellow friends who were diagnosed as kids who tried getting off their meds and ended up developing epilepsy and needed to get back on their meds. I am very afraid of this happening to me, as we take similar bipolar medications.
Right now I am typing up a plan, called the Freedom Itinerary, to try to roadmap out of here. Hopefully I come up with something that works and I can stick to it.
I have been taking steroids in order to walk around without a mobility aid. Somehow I can get up at 6AM and do yoga, but after that I have difficulty moving. A big problem is that my legs and feet are as big as water balloons. They constantly itch and burn, and it’s hard to put any pressure on them at all. Imaginably, this makes walking almost impossible.
This past week, I had to go into town for a doctor’s appointment. I had my cute pink mask on, and the only pair of shoes I could get my feet into – some Franco Sarto Chelsea boots I had gotten as a Christmas present. While sitting in the passenger’s seat, I had to peel off the boots 3 times because of how badly my feet were swelling.
Eventually, my husband, family and I decided that I needed to get some high quality shoes that would be versatile in Texas. My mom has owned and worn a single pair of San Antonio Shoemakers, SAS, sandals for 35 years. She bought them right before her wedding to my dad. The shoes are handmade in San Antonio and I discovered when I walked into the store it was the kind of place that didn’t have prices listed anywhere. Fancy.
I settled on a pair of straight-up Velcro sandals fairly quickly by asking for help (as I was in my boots, I needed to get out of those things and be assisted while sitting down). They were the Cozy Slide Sandal in a double wide. This time in stores they were on sale for $114, the shop keep told us – if you click the link, you’ll find the full price.
The Cozy Slide Sandals are really, really comfortable – and they do their job in assisting me in moving around without a mobility aid. I wear them all around the house because they feel like walking on clouds. This adds a layer of fluffy but structured cushion between me and the floor, making it easier for my feet to hold up to individual steps.
The sandals might not be the most fashion-forward, but I was so relieved and proud of them that I took a couple of pics of them on my feet. (These will not be shown, because, well, I don’t want to end up on a google search for fat feet. I have sick feet, not fat feet, thanks.) I purchased the matte cream color that still sparkles a little in the light. The versatile color and the fact I’m in Texas means I’ll be able to wear these 2/3 of the year with basically any outfit. And for the price, I will probably be wearing them with all of my outfits.
I used to tease my mother about her SAS sandals, because to my young self they looked like old lady shoes, but I totally understand now. Hopefully these last 30+ years. I’m not much of a shoe person, but nothing quite feels like a brand new pair of shoes. With the addition of my neuropathy and swelling, shoe buying has a new layer to the hunt. Knowing where to look certainly helps.
I’ve been off the internet for a while trying to figure out good ways to care for myself as I went through my latest pain flare and manic episode. With the help of my EMDR therapist, I came up with a daily routine, scheduled by the hour, for about 4 different tasks I could do, excluding morning quiet time hour.
I’ve been practicing a rough version of the routine for about 4 days now, and it really helps when the anxiety kicks in. Knowing I have something to do at all times is extremely grounding. In the back of my mind I do know I have something to do at all times, but having a printed out schedule for a visual cue really helps.
So, my biggest tip for fibromyalgia self-care is to have a broken up schedule, especially for days you don’t work, or to manage your work day.
Morning Quiet Time Hour
I have about 7 tasks I do in morning quiet time hour. That sounds like a lot, but they’re all in the same vein – spiritual and relaxing.
I begin by putting on some chakra healing music. Then there’s yoga, with a minimum of 5 asanas (AKA poses), each held for 10 breath cycles. After this I grab some water and I meditate for at least 10 minutes, maybe more, to a morning time meditation on gratitude. Then I do intention setting, a type of meditation where you place your hands on your heart and reflect on what makes you afraid, what gives you strength, and a spiritual power. The point is to find a word that comes to mind when reflecting on the spiritual power to center your day around. When you know your word, write it on a piece of paper and place it in a drawer or your pocket, and at the end of the day read what it was. Once I find my word, or intention, I write a gratitude list with the chakra music on and sit in the dark until the sun comes up. Once the sun is up, I grab a coffee and sit on my back porch with a sacred text to read and my journal to reflect in. The point of this last step is to grab the first 20 minutes of sunlight.
I do set an alarm every day to wake up before everyone else. Some might think this is pretentious or impossible, but I really do think with fibromyalgia personal quiet time is key to starting off your day right. Investing in yourself alone and having niches for yourself is paramount to cultivating positive energy that you will need to fight the pain off throughout your day. Sometimes putting in a little more effort at the start results in ease the rest of your day.
The Rough Schedule
7AM is breakfast and more coffee. I mix up writing, laundry and job hunting until 11AM, when I hop in the shower and make sure I’m dressed with my hair and full makeup done for lunch. After lunch, around 12:30 I do “music in the dark” – either chakra healing music or my favorite tunes of the day for thirty minutes to an hour. At 1 to 1:30 PM I start continuing education. I have a few free Udemy courses on web design and writing I’m taking, and I spend this time until 5pm with a few music and writing breaks. It’s time to cook dinner at 5. After the family finishes at 7, I either hang out with a friend over Zoom or read a book and do a DIY home spa. Lastly, I finish the day with a relaxing meditation. I’m done by 9:15, and it’s off to bed.
DIY Home Spa
I’m big on physical pampering to fight fibromyalgia. I like to feel physical joy, and I take pride and pleasure in grooming myself. This is why I put on makeup every day and do my hair. Another thing I like to do is take a large tupperware container, big enough for both my feet to be submerged in water, and put a kettle of hot water (not boiling), 2 cups regular temperature water, 1 cup lavender epsom salts, 1 cup coconut oil, and 10 drops eucalyptus essential oil in it. I have a little space of the house to myself and a comfortable chair. Then I turn off all the lights, light a candle and soak my feet for 20 minutes while reading a light, fluffy book and listening to my current favorite music. If you do the foot soak, be sure to put lotion on your feet afterwards!
The alternative variation of my nightly home spa is a epsom salt bath without the coconut oil and two cups of epsom salts.
Special thanks to @KarenDScotland and @AManWithFibro who made this iteration of the book possible.
I am on iteration 4 of the book. Right now I am awaiting the official MS notes from my editor. But she did send me some more notes in an email. Right now my job is to:
Beef up word count (sitting around 20,000 words which is a bit short after gutting the book)
Make the book more hopeful and peppier
The book’s job is to serve:
the mobility impaired (meaning wheelchair users, cane users, walker users, anything that helps you move, etc)
those who suffer from chronic pain
those who have chronic illness (this is a huge range – and includes those with epilepsy)
I’ve taken a break for a week or two from writing because of various stressors in life and I’m going to take advantage of a calm day of chaos to get back in the saddle again. Thank you to those who have helped me with my interviews and surveys, you are invaluable and amazing.
If you should wish to contribute to the project, email me at firstname.lastname@example.org. The more research the better!
Today, I had to take steroids. For the third time this week I ended up walking around the house using my wedding cane. It was terrible but the steroids helped and I’m keeping my legs elevated.
Another thing about today and the other days of the week I’ve used a mobility aid, whether I’ve left the house or not, I’ve done a full hair and makeup getup, and worn a pretty dress. Yesterday I tried the Pinterest listerine pedicure, which exfoliated my feet but turned them blue, and painted my nails red. I’ll probably stick to Korean feet masks.
Every time I make myself pretty, I take a selfie because of all the extra effort that went into it, especially if it was on a bad day. I am proud of the work it took to doll myself up, whether it’s a pedicure, skincare, an outfit, my hair, my makeup, or a mix.
Going back to being a child, I have found strength in my femininity. Many people denounce selfies as vain, but after my illness, it’s simply me saying, “hey, I did it!”
I’m not looking for attention or accolades. Just the fact that I did it for myself and have something to look back on is enough to help me fight my battle against chronic illness.
Few things have saddened me more in recent days than the unjust murder of George Floyd. First is his death, and second is the response certain Americans have given to the type of protest seen in Minnesota, including the mocking of it.
“It was wrong for him to die but it was also wrong of THEM to riot and burn a Target,” some Americans say.
Who are these THEM? Why are we devolving into US vs THEM language again?
Because it’s about control.
The African American community has been ushered into oppression for hundreds of years. No matter what form of protest they attempt, it’s seen as wrong – taking a knee during sporting events, to now riots. How are they to be heard?
Most people I see denouncing the riots claim to be Christians. I came across this tweet on my Facebook timeline this morning and it makes a solid point:
As someone who is a Christian and familiar with this specific text, I wanted to take a closer look at it, because having some theological background really hits this tweet home.
Jesus Clears the Temple Courts
13 When it was almost time for the Jewish Passover, Jesus went up to Jerusalem. 14 In the temple courts he found people selling cattle, sheep and doves, and others sitting at tables exchanging money. 15 So he made a whip out of cords, and drove all from the temple courts, both sheep and cattle; he scattered the coins of the money changers and overturned their tables. 16 To those who sold doves he said, “Get these out of here! Stop turning my Father’s house into a market!” 17 His disciples remembered that it is written: “Zeal for your house will consume me.”[c]
18 The Jews then responded to him, “What sign can you show us to prove your authority to do all this?”
19 Jesus answered them, “Destroy this temple, and I will raise it again in three days.”
20 They replied, “It has taken forty-six years to build this temple, and you are going to raise it in three days?” 21 But the temple he had spoken of was his body. 22 After he was raised from the dead, his disciples recalled what he had said. Then they believed the scripture and the words that Jesus had spoken.
23 Now while he was in Jerusalem at the Passover Festival, many people saw the signs he was performing and believed in his name.[d]24 But Jesus would not entrust himself to them, for he knew all people. 25 He did not need any testimony about mankind, for he knew what was in each person.
Okay, why are you reading this?
Well, let’s examine what exactly these temple courts might have been. Some theologians, such as the biblical historian Ray Vander Laan, speculate that the temple courts mentioned were the Gentile Courts, where the Gentiles were allowed to worship JHVH in the temple.
Jesus was enraged not only by God’s house being used as a market, but also by the specific place where the money changers were conducting business – the Gentiles could not worship God there in peace. This was ethnic injustice.
So, what did Jesus do? He rioted. Literally.
You could be wrong about the Gentile thing.
But even if I’m not, Jesus did literally do that whole riot thing. He turned over money changing tables. Cash was lost. Is that theft? What is that? Is that looting?
You are thinking in a worldly, not heavenly mindset.
Yes, Jesus alludes to raising Himself from the dead and us all having eternal life through Him. But that didn’t stop Him from action while He was on Earth, as we should not waste our time here.
I think it’s also important to note that nobody understood Jesus when he said, “Destroy this temple, and I will raise it again in three days.” We often misunderstand each other. These gross misunderstandings and exploitations of them are contributing factors of injustice.
You are saying controversial, ungodly things and people will unfollow you.
Yes, I am. But I’m saying them in one of the few ways I know how. And I must say something.
On zoom a very good friend of mine and I have a bible study for just the two of us almost every day. It’s a good way to keep connected, learn more about ourselves, each other, and Jesus.
Right now we are studying Philippians and one of the last questions for the study yesterday was something along the lines of how you learned where you needed to improve and how you could implement it.
I struggle with being joyful, and I told my friend that perhaps being reminded of the joy I have in the Lord would help me. Maybe I could have visual reminders?
Next I recounted an anecdote about Stephen Colbert and how he supposedly kept Hebrews 1:3 on his computer monitor.
The Son is the radiance of God’s glory and the exact representation of his being, sustaining all things by his powerful word. After he provided purification for sins, he sat down at the right hand of majesty in heaven.
Hebrews 1:3 NIV
I could try sticky notes around my office space. Then my friend texted me the verse.
Hebrews 1:3 is pretty deep. It reminds me of the sun and moon, how the sun nourishes all living things and we can walk by night by the moon’s reflection of the sun. And both of these heavenly bodies are, well, in heaven. I know it doesn’t mean that at all most likely and means more than that, but this is an allegory that comes to mind.
Jesus is powerful, and he loves you tenderly. Have a little joy in your heart from that! I’ll try to have some in mine.