I’ve been thinking a lot about the Spoon Theory and what it is like to live with chronic pain lately.
Part of this came out of the realization that while leaving the house is a rare and special thing for me, there’s this wonderful resource called the internet – which I use for so very many things – but until recently had never considered using it to find comrades-in-chronic-ness.
Even with that realization I haven’t exactly gone out and looked, but I have found some people, and it has been a wonderful experience.
‘Solidarity to you in the struggle,’ I was told a couple weeks back. It stuck with me. One of those weird random touchstones that settle into your mind and help your sanity.
As I commented in our most recent updates post, I’m not alone with my issues. I am lucky in that I have an actual support structure. Mister Tea is amazing, I have some pretty awesome (mostly in other states) friends, and Dulce keeps me from breaking bones – and Stays Her Human Put when she feels it necessary… but I had felt a little lonely in zebradom. For me, at least, I skitter around the edges a bit when speaking with people who don’t have similar problems. There’s just too much explanation involved.
Additionally, the first reaction of many is pity or a weirdly awkward sympathy. There’s nothing exactly wrong with either, but… it isn’t what I seek when I talk about things.
Honestly, sometimes I forget that my average day isn’t normal. So I will talk about things that, for me, are facts. And it startles people. Sometimes it horrifies them. And then suddenly, everyone is uncomfortable, including me. Often especially me.
Since pondering chronic <insert unpleasantness here> had been taking up so much of my brain-space lately, I decided to hunt up things on Etsy for a treasury. Given how infrequent my treasuries are, I’m mildly worried that when I make it live something signifying a step towards the apocalypse will happen.
If you’d like, you can proceed directly to the full treasury without ‘listening’ to me ramble first.
And now, on to the rambling.
I’m going to start with the pieces of jewellry, because whether I would wear them or not, having things to wear that are both pretty and mean something helps. Some of these I would wear, in my “becomes the stuff you feel naked without” way, some of them I would wear were it not for cats and a sometimes overly-energetic wolfhound. (Even when she’s being gentle she can lick non-stud earrings out through sheer intensity of love.)
Charm bracelets have fascinated me since I was a small child. I’ve never actually owned one, strangely. When I was younger it wasn’t an option, and later on I had to bow to practicality.
I used to imagine that each charm would be a talisman, and that running your fingers over each one would help. Sometimes I envisioned this in a more magical way, and sometimes it was just the sense that it would help to center and soothe you.
There have been a couple of pieces of jewellry that have acted as that sort of talisman for me, and I think a charm bracelet would be helpful to others in the same way those pieces have been for me.
In her shop message and as a primary part of her header image, Pammytail talks about the capacity to tell your personal story – which is something that appeals to me. One of the things I always try to remember when interacting with other people is that everyone has their own story to tell, and you can never know upon first glance all the chapters within it.
This is the listing for the bracelet.
I fiddle with necklaces, typically the dangly bits on them have meaning, and are a mental solace. When I’m having a particularly rough few moments, a hand will drift up to touch them, or if it is stress based, worry them like a stone. (For hours of rough I have a teddybear that my partner made to be representative of him. Also an assistance wolfhound.)
This seemed like a necklace that would fill that sort of a space. The Spoon Theory was a eureka explanation for me, and discovering that there were so very many others out there that understood the concept…. it is something I am thankful for.
SoSimplyQuaint actually listed a couple of new spoonie necklaces today, and they are well worth a look.
I love dangly earrings. Especially ones with multiple bits. They tend to have their own personal rhythm and tone, and I used to choose earrings as much by the sound as by the look, when perusing my personal collection.
Due to the cat and dog issues I only wear dangly earrings when I leave the house, these days, but I still find them very nifty.
These didn’t catch my eye just because of the Spoon Theory, they also made me giggle due to the days where I run out of proper teaspoons when measuring out samples or making new teas. I seem to need more spoons in many arenas of life.
The woman who runs the Spoonie Store is working on saving up enough money for disc replacement surgery, so purchasing anything there will put her a tiny step closer to something much needed.
Additionally, she has an interesting website, where she talks about using photography and other creative methods to help deal with some of the constant grinding issues attached to chronic pain.
For me, at least, sometimes the bad mental/emotional days are worse than the truly bad physical ones. Granted, I don’t enjoy having no choice but to curl up in a ball as my brain melts out my ears because life hurts so much breathing almost feels like too much to remember… but it is easier to face than the days where the feeling of worthlessness seeps through into your every thought.
Learning how to fend those off, and change your internal dialogue, is an important component to dealing with chronic illness.
Just a word, on a chain, you might say – but it is a powerful word and an often needed reminder.
I mentioned that the pendants on my necklace are touchstones for me. One of them is actually a ring that I used to wear on my thumb. Simple silver with a ribbon twist at the center, and the words “Nothing is impossible.”
It was a gift from Mister Tea because he thought I needed those words. Not just from the perspective that someday the things that are wrong with me might be able to be fixed, but also from the angle that according to some of my doctors and friends, I accomplish the impossible almost everyday, and perhaps I should give myself a little credit for that.
Believing that you can actually make it through a bad day, believing that you still have something to offer the world, believing that there is actually a point to continuing to try… this is part of the journey.
The last piece of jewellery in this treasury is something I actually could wear, and am considering, as my right wrist is currently bare.
‘Breathe.’ My favourite pair of socks are plain black with the words ‘just breathe.’
Whether it be due to stress or sudden bad news or a pain spike or…. sometimes what you need to remember to do is take a step back, take a few breaths, and level yourself out.
Sometimes it is a little too easy to get caught up in your own personal whirlwind of thoughts and emotions, and doing so usually makes everything a bit worse.
Wordy Woman has quite an array of choices of neat words on a variety of different styles of object. She also has the option to customize just about everything, including what metal you would like to use. As a person with weird allergies, that last made me very happy.
Switching gears for a few, I’m going to move into the more pragmatic choices for this treasury.
Flaherty Naturals is run by an amazing artist specializing in “turn herbs and things into externally usable awesomeness.”
One of my persistent issues is that depending on the level of pain during a particular day, I don’t receive other important messages. Hot, Cold, Hungry, etc… This causes a variety of different problems, one of which this salve addresses quite nicely.
A lot of hand-washing occurs when you work with things other people will be consuming. If you can’t tell how hot the water is, this can cause some interesting skin damage fairly swiftly, especially in winter. Last year this salve saved my hands, and let me get back to working far more quickly than I had feared. It has also helped with the skin response Mister Tea occasionally has to stress, as well as with the chapping that occurs when you have to blow your nose a bazillion times a day.
She is another one of the ladies from The Handmade Forum, and she is brilliant and hard-working and helpful. I’m not sure if she ever actually sleeps. Her ethics regarding her ingredients mirror our own, and she has a wide array of helpful things for just about all of your toiletry needs.
Heat/Cold packs are a concept that I know I need to remember more often. Sometimes my approach to medications of various sorts (only when I really really desperately need it) carries over into areas it really shouldn’t.
We’re discovering that Mister Tea should think about using them more often as well. Sometimes the crushing headache is being caused by the muscles in your neck and shoulders working tirelessly to remove your head.
Natural Therapy Packs has an array of shapes, sizes, and colours. She is also willing to discuss custom fabric options, which is pretty neat.
She fights fibro, and I get a particular warm fuzzy from people who take a particular aspect of their own issues, and try to help others with similar problems.
You can find the particular pack I chose here.
Still in the pragmatic category, but also sliding over into the more difficult wishlist category, we have this wheelchair leash from Cody’s Creations.
My Dulce puppy has great instincts, as far as being an assistance dog. The things that she has figured out on her own are pretty impressive. We’ve wished we could get her the actual full training, but it is terribly expensive, so she can’t come with me everywhere… no matter how much she wants to. (She worries, and is generally unhappy with me being out of possible sight.)
However, for many reasons, I think this is an excellent concept. I know many people for whom dogs are a needed support and aid, and others for whom they would be.
The shop focuses on pet accessories, for a variety of different needs, wants, and aesthetics.
I love her shop name, and it is attached to a community centered around this website. The tagline is “making chronic illness suck less,” which is definitely a sentiment I can get behind.
As far as bookmarks and useful… I am a voracious reader, though occasionally in fits and starts. I am also awful at one-book-at-a-time. Part of this is because of my constant research, and part of it is just a personality quirk. Add to that the chaos for small objects caused by cats, and bookmarks are useful to have in numbers.
I still haven’t figured out how to craft a proper pillow fort, but I have a decent setup involving a Mister-Tea-Made-Pillow-of-Comfiness+3, a corner of the couch, a wolfhound, and one of a number of happy blankets. (Some made by me, some made by people who care.)
This is another object that falls into the self-reminders category, and even her shop name is almost a mantra.
She’s had to put her shop into vacation mode due to health needs, so I wish her the best in things improving.
She does state she will get back to people as she can, but her own health needs to come first for a bit.
Spoons and Geekery. Excellent.
For years and years now I’ve been beating the odds, surprising people, and stubbornly refusing to die or become paralyzed or…. any of a number of other truly awesome options.
I do take the statements and advice seriously, but… there’s a point at which numbers, statistics, and predictions get a little wearing.
The shop seems to do a different sort of donation per sale each month. For October it is Chemo Care kits.
I hadn’t expected a PATCH to pop up in my searches for things to put in this treasury.
I used to wear sleeveless vests with patches all over them near constantly. Many hours were spent ironing and stitching and…
I can’t really vest anymore, due to complications involving wheelchair and canes and the muscle groups that expand when you have to arms-as-legs with frequency. However, I have a long-term project where I am going to create a skirt with closing pockets anywhere they might be useful, and the plan is for each pocket to have a patch. (I figure that design will give me useful pockets again. Pants pockets can be a bit… pointless… when in the chair.)
This patch is on my list for adding to that skirt.
Another surprising find were these greeting cards from Elly Hartley Designs.
I actually had a tough time choosing which card image to include in the post, as I liked them all.
In the end, I went with the Geek option.
She has designs for sending to other spoonies, and designs for thanking people for being willing to deal with the “schedule issues” your friends can be confronted with when your body is treacherous.
These are things you don’t find in the greeting card aisle at <insert standard store here>, and I was pleased to find them.
This image came up in my first page of search results, in the first search I ran.
It leapt out from the array of images, and all I could think was “Wow. I know how that feeling.” The sensation being presented visually was… impressive.
The artist struggles with fibro, so it makes sense she’d be able to translate pain into paint skillfully.
Her art ranges over the spectrum, and I’m fairly certain there is something in the 400 odd pieces that you will fall in love with.
The last two spots in the treasury were planned from the beginning, in a general sort of way. Originally it was supposed to be three, but I could not find one of the quotes I was looking for.
There are two places where I spend most of my “work” time. One of them is at my desk – dealing with things on the computer, shipping, scribbling, reading books too sizable or heavy to cart around the house…. and the other is in the kitchen. (Where I do not, in fact, have a cauldron or any bottles labeled eye of something or toe of the other thing.)
There are three magnets with words on them on the hood over the stove. Two of them have been following me around for quite a while, and the third was a more recent gift from a dear friend.
One of the best parts of being Desert Sage is knowing that we have helped people. Some of the feedback we have received, the heartfelt messages we have been sent – we’re definitely doing Good Things.
Which is a happiness.
This quote was the gift.
I am thankful for the reminder every single day, and doubly so on the bad days.
I’ve come across the words-you-can-stick-to-walls concept a couple of times, though it isn’t something I have tried. I am fairly certain there are people I know who would suggest sticking this somewhere in our house. Possibly where I could see it from the couch corner spot I described earlier.
You can visit the shop here.
Oddly hard to conclude this post, as I still haven’t finished the ruminations that were part of why this treasury was created.
I know that dealing with a chronic/degenerative condition has taught me a lot, both about myself and about other people. I have met people who inspire me, and have been told that I inspire people.
I would not have written this particular series of chapters for myself, if I had had the choice. But scattered through have been strange little silver linings, and people I never would have connected with in the same way.
I have also garnered a greater depth of understanding of a variety of different things – and that opens new capacity for empathy across a broader spectrum.
It can’t all be bad, right? Or, perhaps more accurately, one can find good things in the midst of the bad.
Beyond that, whether you are a fellow spoonie or not, I hope you’ve found something in the treasury or in the words talking about it that speaks to you.
Whatever your personal struggle – I wish for you strength, hope, and a few extra spoons.