Despite this week’s uncanny decision to render me miserable after I posted such happy thoughts of managing my illness I am bouncing back. Today I am at the gallery, surrounded by stunning things. I am so blessed to have such a lovely place to be and such an understanding work family. How many people can barely manage a 60% attendance at work and still feel like a valued member of the team?
I am also getting my Empathy Fish up on my website today. I have photographed them for posterity and have ordered Giclee samples so I can see if they work as limited edition prints.
I have four ready for sale and another that just needs touches to be ready. Already there is something large and tentacled floating around in my mind, awaiting time to set paint to paper.
This upcoming month is going to be a challenging one with two different shows for my jewelry. I am doing my best to be prepared and to carefully manage my spoons. Here’s to hoping I can succeed!
I wish you all the best today, here it’s cool and sunny, a perfect day for walking around.
So there I was happily explaining how well I was managing symptoms when BLAMMO!! yesterday I was down and out for the day. Not only was my headache being obnoxious but my feet and arms and back and legs, well you get it, my fibromyalgia came forth to remind me that no matter how well I manage on good days, on bad ones I am one unhappy little pain puppy.
I tried walking the dog, because you are supposed to move around when fibro gets bad. Moving helps right?
No, no it doesn’t. It is miserable while you do it and miserable when you get home. My feet and back were throbbing and aching and otherwise horrible during the walk and once I stopped moving everything seized up and I was stuck in bed for hours until my muscle relaxant kicked in.
So it was Harry Potter and sleep for me last night.
Then today it was headache central again though thankfully my body is calmer. I got so sick of hurting I designed a headband for holding ice packs in place, chopped up one of my favorite scarves, stitched the thing together and voila!!:
I may not be able to function without ice today but now I at least have the use of my hands and I look at little, if not fashionable, at least intentional.
Tonight I have a board meeting for the one charity I still volunteer for. I cannot miss it so please wish me, and my bohemian ice wrap, some luck.
Happy Eclipse! I hope you got to see some cool stuff. Here are some of our photos, the trees treated us to a really cool experience here in Denver:
A while ago I posted about the benefits of giving up. Since then I have been dealing with my pain mostly on my own. I have a muscle relaxant to take the edge off my fibro-stiff muscles and an anti-depressant to take the edge off living with daily pain. For emergencies I have vicodin, but I can only take one a week max.
So far I am happy to report things are pretty good. I still hurt every day. I still get stiff and sore and feel my joints like no 41 year old should. I still have a headache that will never, ever, end. However, I have my life back. I no longer spend three to four days a week making my family drive me to different specialists and physical therapists. I no longer have the added pain of recovering from procedures that don’t really seem to work. I am no longer dealing with huge amounts of medication side effects as my doctors cycle through them trying to trick my broken nervous system into thinking it’s better.
Instead I have time to blog again. I work in the garden. I paint. I paint a lot. I read and play games and hang out with my kids and take my dog for long walks. I cook dinner and can sometimes clean the house. I kind of have a normal life again.
I’m still falling down on spoon management from time to time. Today I just had to paint a new Empathy Fish and while I felt good during the painting process I can already feel the stress my decision caused my body. I got ambitious and tomorrow I will pay. However, so long as I am patient with myself I can manage this illness with exercise, mindfulness, a couple of helpful meds, and art.
Art has become my solace, my healer, my place of peace. Somehow in the last month I have turned on whatever neuron housed my painting ability and I am loving every minute I hold a brush. My headache recedes into the background as I mix color and create shapes and play with light. Somehow I can paint, nearly every day, even though everything else takes careful moderation. Maybe I have finally found something that takes fewer spoons than everything else.
So I have said goodbye to my life as a busy lawyer and advocate with a million charity events and causes to attend and am embracing my life as an artist. I will create, if nothing else, a place of less pain for myself and with any luck a few pieces of beauty that bring joy to a small section of the world.
Today I write this to remind myself during the hard days that I have days where I feel like this. Where I feel hopeful and strong and capable. Days when I don’t feel like less than my old self. Days when I even feel like more than I used to be.
Managing life with chronic illness requires savvy spoons