Facing up to face pain…

Sometimes my trigeminal nerve likes to make my face feel as though someone is slicing through it with a super sharp razor blade, over and over again, non-stop. Nothing really helps with the pain once it’s been activated, except for dry needling.

I have been staying away from dry needling as I was feeling better and didn’t need it anymore right?

Wrong! I need it now! It’s nearly 1 am and I can’t sleep because some invisible sadist is carving the left side of my face like a jack-o-lantern.

So tomorrow, phone calls and needles. Lots of needles. Also, when did my spirit animal become an ostrich?

 

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Up and at ’em…

Things are brewing. My paintings are gaining a modicum of popularity, a complete stranger bought something from my Amazon Handmade page, and Pirate Fest is coming up in about three weeks.

I am determined not to give in to the desire to flounder.

Having said that, I have something I have to do and I admit I don’t want to.

I have to, HAVE TO, treat my body better. I stretch a bit and walk almost every day, but it’s been years since I really pushed myself to exercise. This is really stupid of me because all the literature says the only thing that really helps Fibromyalgia is exercise.

In the past I haven’t exercised as much as I should because I was working. Now I am not. I no longer follow the 40 – 60 hour a week schedule I used to use as an excuse to stay away from the gym.

So my doctors have suggested it, the literature suggests it, I have time for it, why am I not shaking my booty?

I think I’m scared. I think I am afraid I will be disappointed or embarrassed by my limitations, which really is stupid because I’m the only one whose going to be around really so why would I be embarrassed?

Ugh. Maybe it’s just easier to walk and call it good. Who knows. All I do know is the excuses are gone, the medical situation calls for it, and if I am really going to try and manage my symptoms with minimal medication I have no excuses for not exercising my way to a more well managed disease.

So. Swimming twice a week. Crunches every day. 15 minutes of yoga when I wake up and 15 minutes before I go to sleep. Arm exercises with my wrist weights on when I am resting in bed. Then maybe, just maybe, I can get myself to run again.

Time to program the new Vivofit, set myself some goals, and get up and at ’em.

Three steps forward…

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.

Spoke too soon…

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!!:

Bohemian Migraine Snood
SavvySpoon’s Bohemian Migraine Snood!

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 new path…

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.

 

Overload…

I can only begin this post by stating I am aware of the privileges I have as a white middle class woman. I recognize my experience is different from that of a person of color. In fact, I recognize my experience is different from that of a person with a visible disability, instead of my invisible illness. In societal terms I am, within the boundaries set forth for women, acceptable, and to a large point, welcome.

So I can only begin to imagine the stress my less welcomed fellow Americans are undergoing right now. I can only extrapolate from my own sense of powerlessness the helplessness they must be feeling. I share in their anger and dismay but I cannot fully understand how they feel.

I can only hope there is something I can do to help put an end to this madness.

There’s an added complexity for me, one that is the underlying cause of this post. My invisible illnesses are made significantly worse by emotional stress. I am literally making myself sick reading about everything that is going on with my beloved country every day. So I need to strike a balance between knowing what is happening so that I can find ways to help and giving myself space to process so I don’t make myself sicker. (Again, I recognize that being able to give myself that space is – in and of itself – a privilege.)

This is a concern I have heard repeated in the SpoonieSphere. Many spoonies want to help, want to make a difference, but are experiencing this same drain on their already limited resources. Many can’t march with protests, most don’t have extra money to donate. What are the best ways to help while still “putting on our oxygen masks first”?

Let’s begin by choosing some reputable news sources that come out once or twice a week. For example, Code Switch by NPR has been recommended along with New York Times’ The Daily . These two podcasts provide fairly thorough reporting on what’s happening in the U.S. You can also give British papers a read through, I find the U.K.’s take on our happenings to be less biased one way or another.

Second, there are some things we can do at home to help support the fight against hate.

  1. You can stand against hate in social media. Confront those who spew hate, and loudly disavow it on your social platforms. Be one of the voices condemning it.
  2. You can support your local marches and vigils, even if you can’t attend. Perhaps you can make a few signs and give them to the organizers to hand out to people, or you can use your social network to enhance the message of the protest.
  3. Write to your representatives in the government. Let them know you stand against racism and you want them to stand against it to. Write to everyone who represents you. You can do it in email, through the post, or via petitions.
  4. Personally message the people you know who are targets of these attacks. Send them a loving and supportive text or email or card. Call them. Let them know you are a member of their community who loves them and wants them to be there.

There are things we spoonies can do without making ourselves sick and we should do them. I don’t know about you but sitting around doing nothing is untenable for me.

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I tripped over a Stone.

My life with Fibromyalgia.

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