Category Archives: Chronic pain

Chronic pain, Spoonie

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As someone who routinely has to give significantly less than 100% I have a tendency to give more than on should on the days I feel good. While I am aware that giving too much on good days contributes to being worse off on bad days, I seem to be unable to stop myself.

An ai rendering of my dumb ass feeling superhuman and burning through all my spell slots at once.

Today I was finally feeling decent enough to do some things around the house. I started the day acknowledging that it’s been a hell of a summer and I should be low key and not do too much. I read on the porch and drank coffee, talked with my mom, and enjoyed the morning.

Then I was alone in the house. Superhero me began whispering in my ear. I decided to finish the flooring the trim on the storage closet we had redone. No big deal, the tile we are using is basically just big stickers and the trim is minimal. Besides, I will feel accomplished and have an easier time resting after I finish that right?

Except I had a really itch reaction to the cold plunge yesterday and it really needs fresh water, I’ll go ahead and drain it, clean it out, and refill it. Then I will be ready for new cold plunges on bad days and be in better shape for self care!

Except I really needed to empty the catboxes while the plunge was draining because they were gross and while I am throwing that muck away I might as well clean up any dog mess in the yard so that’s taken care of.

Time to scrub out the plunge! It’s empty of water and needs a solid scrubbing, rinsing, and then refilling.

As least I sat and rested while it refilled.

Then I went to get showered because I was sweaty and gross but there was a tile on the bathroom floor that had shifted ever so slightly resulting in a gap that has been driving me crazy for months so I trimmed a tiny piece of new tile off and fitted it into the gap, then using wood floor repair markers I colored in the piece to match the pattern on the pieces next to it.

Then I showered.

Then I got dressed and it was dinner time already! Good thing there were left overs. I decided that instead of heating and eating them I would make Fried Rice.

Then I cleaned most of the kitchen so my mom wouldn’t be stuck with that mess.

Now I feel like I’ve been flattened by a steamroller.

Is it the ADHD that makes me run around like that on a good day? Unable to stop flitting from task to task until I hit the wall and collapse? I would like to employ the myriad of coping strategies I have learned for energy management but I never seem to be able to access that part of my brain while I am up and doing things.

I’ve only been disabled by this damned disease for 16 years, it’s not like I’ve had practice or anything!

art, Art Antics, Chronic pain

Why creating ANYTHING is important…

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if your body is convinced the world is trying to kill you all the time.

I am more than 16 years into my chronic pain journey. In that 16 years I haven’t gone a day without a headache or pain somewhere in my body, usually both. I’ve spent a fortune visiting the country’s most knowledgable doctors, having the most in depth tests, and trying the most outlandish treatments. I have tried all the drugs, including Ketamine Infusions, and I have done all the botox.

What I discovered was this;
Pain killers don’t work with neuropathic problems. They just add fatigue, confusion, constipation, and eventually addiction to the problems I am already facing. They also impair my ability to drive and make decisions.
There are medications that will bring neurological symptoms to a dull roar, but there aren’t any that will make it go away. Medicine isn’t there yet.
So what the eff does give me a break from the unceasing pain coursing through my body?

ART.

Making any creative thing really. Fine art, crochet, designing stickers online, making miniature gnome habitat parts, it really doesn’t matter as long as I am losing myself in the process of creation or – as the artists lovingly call it – the flow.

See the little watermelons on the right of the bamboo decking? I painted acorns I found on my walk with paint pens. Not fine art but it sure was a fine pain distraction.
See the shiny sparkly thing on the left of the house? Beads, wire, and several hours distraction from pain. (I made 5.)

I have created art my whole life, whether through singing and dancing or painting and writing, whether for myself or for profit, and I can tell you the meditative deep dive your brain goes through when you start making something, is the best pain break on earth.

One of the heartbreaking things I have discovered in my time as an artist is most people believe they cannot create art. Our culture has monetized everything to the point that we all believe we can’t do something unless we can do it to the level of selling it. When it comes to the creation of art, we are selling ourselves short. Humans have been creating art since we’ve been around. There are cave paintings from our earliest ancestors. Our very existence on this earth has grown up with art and the process of creating things and expressing things through music or sculpture or drawing or anything is deeply rooted in our brains. We benefit so much from making things. Any things.

This “Little Free Gnome Stuphs” library I made day before yesterday took me 5 hours. I was in a horrible pain state in the morning so I brought out a glue gun and some popsicle sticks and a YouTube tutorial and as I worked my body began to relax. My pain eased.

I devoted more than half a day to making that tiny popsicle stick library for neighborhood children to open and take gifts out of. It is not something to sell on Etsy or to hang in a gallery but it was fun and meditative AND very effective pain control. It will not solve the crisis in the Middle East, or earn some art dealer a giant commission. It did give me several hours of lessened pain and made at least one little girl smile as she took a trinket out of it on her walk this morning.

Now, if you had told me in year five, or seven, or even nine of this horrible chronic pain journey that I would be controlling my pain with popsicle sticks and glue I would have shoved some choice words up your ass and moved on to my next doctors appointment. I am in no way telling you to stop getting treatments or taking medications. I am simply suggesting you also pick up a coloring book and some pens and see if you get a bit of a break from the eternal weight of chronic illness with an art project.

Being a sarcastic person I am a fan of this stripe of coloring book. You can get your art zen on and swear a blue streak at the exact same time. The important thing is to find the flow.

My flow has been very Gnome Garden directed lately. I’ve made a well, tiny produce, repurposed various jewelry pieces for decor, and created a little village under my juniper bush for the folk. I even treated myself to a few pre-made solar houses that light up, though I did repaint some of them.

I’m not sure what my next art project will be but I know there will be one. It’s a vital to my continued existence on this planet as my PT and my cold plunge.

Chronic pain, headache, health, Spoonie

A constant house of cards…

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is the best description for life with a chronic illness.

Sometimes it feels impossible to live inside this body. It’s as though I am built out of a house of cards and the slightest puff of air can send me spiraling apart.

Every day I have to balance environment, medication, diet, exercise, mood, rest, etc. in order to minimize my pain and maximize my health. If a single thing is out of whack, my house of cards collapses to the ground and I am down for the count.

It’s a difficult feeling to live with and it can leave me feeling lonely, anxious, and depressed. I sometimes feel as though the balancing act is impossible and question why I even bother trying.

After all, how can you plan for tomorrow when you have reason to believe your plans will be cancelled? How do you take on new challenges, develop new interests or even keep up with the minimal required steps for modern life when you are repeatedly ripped away from those things by failing health?

The truth is, sometimes you do and sometimes you don’t.

There are times you can do absolutely everything right and still there is something outside of your control that wrests your meager portion of good feeling out of your hands and sends you back to the sick bed. There are too many days when everything is truly outside your control.

Then, on the good days, just the rigamarole of survival can be tiresome.

Making sure I eat enough protein, avoid inflammatory foods, drink enough water, have the right amount of electrolytes, take all my vitamins, take all my medications, stretch in morning, use the cervical pillow to stretch my neck, use the vibration plate to strengthen my legs, use the hula hoop to strengthen my core, use the balance board to combat vestibular damage, use weights to keep my arms strong enough, use trigger point balls to unlock frozen muscles, cold plunge to lower inflammation, move around to rebuild nerve fibers, have enough coffee to lower my headache pain, have enough yogurt or kombucha to maintain gut health. All on top of the normal things one does in a day to be a person.

How jealous I am of those who can just get up, shower, eat and leave for a day of activity.

I try to keep up with those things on all the days but really bad days result in missed exercise, less movement, lowered food and water intake, and less self-care, which sets me back. A string of really bad days sets me back enough to make the litany of items I have to do on my good days overwhelming and I begin to feel like my health is slipping through my hands. I worry that each setback brings me closer to further disability. I worry that each flare up is the new normal.

If I catch a lucky break and I get a long enough string of good days to catch up on laundry and cleaning and other life maintenance tasks I will start to create and engage with life again. A long enough string of good days and I start to think “maybe this time we’ve found a system that works.” Oh that’s a dangerous hope. It gives me the slightest belief that I can stay right where I am in that moment, well enough to do all the things I’m doing, and there may not be another string of bad days.

But we haven’t found a system that works because there isn’t one. There is only the house of cards, the random puffs of air, and me caught in the middle. It’s human nature to see strings of good days as a good sign and strings of bad days as a bad sign, we are pattern seekers.

In reality, my only reliable pattern here is unpredictability.