A short statement on the utter exhaustion I can feel after a normal day of work.
Anyone who has been following me for the past few years is aware of the long, tedious, and side effect filled journey that has been my tale. I have tried the leading medical treatments and hospitals, I have tried some outlandish theories, I have found some successes, and I have given up.
After years of ups and downs and pain I am finally at a point where my peaks and valleys have largely grown closer together until I am at, if not a constant state of wellness, at least a relatively manageable and stable level of pain. I have also dispensed with the side effects that usually come with the treatments and trial periods, so I am better able to reliably guess my limits.
I am dialing it in.
Is it time to try more? If I am achieving balance in this current state is it time to push myself a little? To see if I can eek out a closer to normal existence? Do I dare?
This weekend was PirateFest in Northglenn and as usual I overdid it preparing for and dealing with the event. In addition to creating a slew of last minute items last week I also reinvented my displays. I did manage to rest some leading up to Friday but not a lot.
Friday early afternoon I grabbed Oliver and we headed up to Northglenn to set up. He was amazingly helpful, especially for a 10-yr old. I am certain I wouldn’t have faired as well without him. He helped me set up the tent, the tables, the chairs, the decorations, the displays, and even the items. During the Pirate Ball he even ran for food and drink and minded the store while I used the restroom. By the end of the evening he was up to speed on using the credit card reader and counting back change.
Sales went well. I completely sold out of chokers, which tells me next year I will need more of them. My ‘mermaid tear’ pendants sold well too.
A goodly number of people bought my charm necklaces and some bought my higher end silver items. It was a good feeling to see those pieces find homes.
As usual I learned a few things:
- Never, ever, use a red camping shade tent in high wind for a jewelry show. To begin with you will have a red cast to all your pieces – see above photo. Secondly, you will see said tent break as the wind whips all the things around. It’s far better to just buy the commercial tent.
- No matter how careful I am I will always overdo it during a show. Ouch.
- Electrolytes do help with the headache. Not so much with the swelling and stiffness of fibro.
- My back won’t actually snap in half when I force it to move after an entire day on my feet.
I have been pretty good about resting today. I did some hydrotherapy on the advice of my massage therapist. Using epsom salt and peppermint I scrubbed all the sore spots vigorously under warm water and then rinsed with cool. It seemed to loosen me up enough to take a short walk with the dog, which in turn loosened me up even more. Sometimes it’s hard to remember that movement itself, as much as the initial bits hurt, ends up making me feel better.
Next week I have Denver Handmade Market, which means I will need to get more things finished this week and then spend three days in a booth hawking my wares.
Let’s hope I can save up enough spoons for it!
You know that thin veneer of socially acceptable behavior we all wear throughout our days and nights? That veneer that keeps us from tossing our wine onto the shirtfront of the idiot at the cocktail party who insists on cloaking his misogynistic ramblings under the heading of “devil’s advocate”?
Some might call it self-control.
Well spoonies have masterful self-control. We maintain it with an iron fist when we are out of the house because chronic pain creates an inner voice that is almost always an asshole or a whiny bitch.
So we shut the fuck up and do our best to ignore the urge to burst into tears at the slightest inconvenience or collapse into a puddle of completely broken human being-ness as we give in to our pain and finally, at last, stop trying to pretend it hasn’t rendered us animals.
Well today my self-control decided to fly off to Katmandu for some sightseeing and I got a glimpse at the monster that lives in the depths of my soul.
Maybe it’s my medication. It’s possible that my inner voice is altered by the ugly addition of Lyrica. I’d like to be able to blame the handful of mind altering substances I pour down my throat twice a day. If not, my inner voice is a manic, terrified, angry, sick-and-tired-0f-the-pain, psychopath who wants to throw up my hands, crawl into bed, and never get up again. Ever.
With my self-control on vacation in the Adirondacks my inner voice is screaming: FUCK THIS CHRONIC PAIN SHIT. I GIVE UP!! IT’S TOO MUCH. MAKE IT GO AWAY OR MAKE ME GO AWAY OR INVENT SOMETHING THAT MAKES ME NOT CARE ABOUT IT.
Because it is too much. It’s too much. I am forty years old and I actually believe that today’s life expectancies are too. fucking. high. I don’t want to feel like this for another forty years. I don’t really want to wake up in the kind of pain that makes me uncertain I can get out of bed every day for another fourteen thousand six hundred days. That is too much of ask of me. It’s too much to ask of anyone!
It’s complete and utter unfair bullshit. It’s the kind of bullshit that makes me want to walk through my house slugging wine, pulling things off of shelves and throwing them against the walls. It makes me want to take a walk of complete destruction wear I inflict the pain I live with on every inanimate object in sight.
Why don’t I? Because then my fucking self-control would come back from helping orphans in Africa and I would have to clean it all up. Which would make me hurt more. Which is, again, fucking bullshit.
So why today? What is it about today that made my self-control hop onto the back of a bird and fly off to Borneo? My dreams.
Here is the story: I don’t sleep well. I never really have. So one of my many doctors discovered I clench my teeth like life depends on it all night long. He prescribes a night guard. I start wearing it. I sleep. I sleep well enough that I begin to dream.
Night after night I dream these freakishly intricate dreams about me as different people in different times. One night it’s a burlesque dancer who did the USO circuit in the 1940’s. Another night I’m a nurse who treats victims of Agent Orange. It’s different every night.
Two things about the dreams remain the same. One, I am always someone dealing with something that causes intense PTSD. Two, I always reach a point in each dream when I start to cry so hard I can no longer speak, even when I desperately want to.
I dream every night about desperately needing to speak about my pain and being rendered physically unable to do so.
Every morning I wake up tense and afraid. I lie in bed and think about how fucked up the most recent dream was as I feel my consciousness return to my body and the pain filter in. It’s like putting on clothes. Pain in my feet, arms, hands, head. Stiffness in my back so bad I am not sure I can move.
I lie in bed as my body puts my pain on and I gather my self-control and my intention to make it through another day. To make something beautiful in that day. To love and to be loved. To feel the wind and the sun and the rain and to remember all the reasons I should do it all again tomorrow.
Today I needed someone else to take me to tomorrow. Today my inner monster was loud enough to make me give up. Today Dan came into my dark, dank, cave of bad feelings and despair and he held me there. He let me cry and listened as I shared my dreams and this sense that no matter how much work I do this is my life going forward and it has so much suck in it. He didn’t try to talk me out of my feelings or point out the good. He just held me. He listened. He took me for a walk. He got me out of the house. He helped me make a delicious dinner and ate with me while we snuggled and watched Game of Thrones.
When I was done my self-control was back. My desire to see another tomorrow, despite the pain that will inevitably come with it, was once again strong. My monster in the depths was once again locked away.
So if it is strong again why am I writing this?
Because your monster may not be. You might be hearing it tell you all the awful you have ahead of you.
Well, it’s right. You have a lot of awful ahead of you. You have pain and medication and doctor’s visits and missed opportunities and the feeling that you have to remain silent about it all.
You also have those things that make your day wonderful. That person who really sees you and still loves you. That animal that curls up next to you when you can’t get out of bed. That show you really want to see the end of.
So let your monster scream. Let the unfairness of it all come out for a bit. Cry.
Then shake it off, lock your monster away, and begin again. You have a long fight ahead of you but you are not alone.
Being disabled comes with a wide range of emotions every morning. Today, for example, was exchange day, the day I hand my children off to my ex-husband for some much needed Daddy time. In general, I love having the uninterrupted thoughts that come with child-free time, but today I found some loneliness setting in with my solitude. When my children left they took with them the constant needs and demands that make it easier to forget that I am as sick as I am. As the quiet settled in around me my mood began to sink and I felt the potential spiral that is depression wake up and take notice.
Usually the best thing for me to do at times like these is get moving on something low energy but useful, like making the bed or folding laundry. As the dog had done her hurricane Penny act on the blankets, crawling to the exact middle of them and turning around and around until they are a tight spiral of warmth around her, I decided to make the bed.
I am so glad I did.
I am blessed in this life to call two excellent quilters friends. One is also my mother-in-law so I also call her mom. In my life I have been gifted with gorgeous, warm, hand-made quilts from them. Today I have three of them on my bed. One, from Mom, is a warm flannel shag quilt that she gave Dan. It is rarely off our bed. Another is a gorgeous batik quilt Ellen made me. The last is a smaller rainbow comfort quilt mom made to cheer me up when my headaches are bad.
As I smoothed out the wrinkles in each lovingly made layer of quilt on my bed my mood began to lift. Here, under my fingertips, was proof that I was loved. That two people cared so much about me that they would spent countless hours and money to make comfortable, beautiful reminders of their support. I can literally wrap their love around me every time I feel the slightest bit alone.
I hope quilters know how much the time and energy they put into their creations means to those of us who cuddle underneath them on cold days and warm, not just our bodies, but our hearts.
Thank you Mom, thank you Ellen. I am so blessed to have you both.