All posts by Misty Ewegen

I am a writer, a jeweler, and a Spoonie. Before becoming a Spoonie I was a very busy high achieving attorney and advocate bent on saving the world. Now I'm struggle to redefine my life to fit within my reduced energy level. Some days are better than others. I have fibromyalgia and chronic daily migraine.

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.

 

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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.

Beset…

Like many spoonies I spend a lot of my time trying not to look sick. It’s not because I don’t trust you to be sympathetic and supportive, it’s mostly because I get sick of my symptoms and want to be able to enjoy whatever event I am attending without paying too much lip service to them.

However, they are always there, hiding in the background and working hard to pull my attention away from your story, the movie, or the amazing meal you cooked. I have to chastise them like poorly behaved toddlers to keep them in line.

Which is why I hate getting sick on top of being chronically ill. That nasty, achy, flu-like, feeling you get with a fever is a daily occurrence thanks to my Fibromyalgia, so when I have an actual fever things suck.

It begins with me feeling like my body is filled with jagged pieces of glass when I move. Everything hurts. Then when I lie still everything hurts. (It turns out lying on jagged pieces of glass isn’t pleasant). Then I will get cold, really cold, deep freezer cold, but the second I pull up the blankets I am boiling hot. Lobster death hot.

At this point I will recognize something else is going on. I will take my temperature, it will be high. I will feel completely and irrationally betrayed by this additional invasion of my already sick body. Shouldn’t I get some kind of “Get of the flu free” card? I have a chronic daily illness, well two actually, shouldn’t that make my body a no fly zone for summer colds, winter flus, and the bacterial crap that hovers around polite society waiting to turn us all into wretched piles of indiscreet bodily functions?

I have become incapable of pushing through colds. I guess it’s because my daily push is so much work that adding the extra layer of suck renders me a wibbly wobbly mess. Every single thing becomes a personal affront to me. I cannot handle the smallest difficulty.

So today, on day two of fever and suck, I feel beset by my illnesses, both chronic and extra. I feel like a presentation exhibit for “What can go wrong with the human body”.

 

Spoonie Box?

I came across this subscription service for Spoonies the other day. I am not sure how I feel about a business profiting off of chronically ill patients but I am also intrigued and wondering if this could be a useful support tool.

My concern is based on my past experience with subscription boxes. They usually consist of one or maybe two relatively nice interesting things you might like but don’t need and a bunch of smaller crap that no one needs. Ever.

If this follows the same pattern than I’m not sure it would be a worthwhile. Often in Spoonie households money is tight, so making sure you are getting the biggest bang out of every buck is important. This box is $39.99 a month, which is a lot to spend when you aren’t sure what you are getting.

However, the business was started by a Spoonie and they claim they are constantly searching for new and useful tools for managing chronic pain so it’s possible this service could be a way to easily be introduced to new-to-market items that might help manage our spoons.

What do you think? Good idea? Bad idea? Don’t care show me some T&A?

Empathy Fish…

When I am in the throws of a really bad pain period, a week or more usually, I begin to feel less able to cope with life than I am when my pain is well managed. I get irritable, more depressed, and less desirous of activity and company. I also begin to feel anxious and desperate, certain that I’ve hit that point when the pain isn’t going to ebb and I’m going to descend deeper into the depths of pain induced despair.

This past week has been really bad. It might even have been really bad for longer than a week, I’m not sure, I have a tendency to lost track of time as my symptoms worsen. There’s been a hell of a series of weather fronts fucking around in my area and that usually sends me into a downward spiral.

This time, as I sank down into the sea of pain I normally float of top of throughout my day I found an unusual coping mechanism.

Fish.

It started with this guy:

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I was lying in my room for yet another endless day and getting really down on myself for not being productive at anything so I grabbed an old copy of the Colorado Revised Statutes, ripped a page out of it, and began drawing. Soon I was painting over the drawing. As I painted I entered that state of “mental flow” where the world withdrew to the background and all that remained was me and this slightly sad, slightly desperate denizen of the deep. The pain receded into the back of my mind and I felt real relief for the first time in days.

So a few hours later I drew this:

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He’s a funny guy, all swirls and thorns and angry red eyes. He’s trotting along, doing his thing, despite having no evolutionary tools that would make things easier. Once again I felt better. As I painted I was able to set aside my pain again, as I normally do. Only this time I was able to do it when I hurt too much to do it the way I normally do.

The next day, being no easier than the last rendered several sketches and this lovely lady:

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Finally late last night I created this fish after I dreamed about him:

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He’s worried. Worried I’ll run out of paper, or paints, or creativity, or maybe he’s worried that the world is going to end. Whichever, he has consumed my worries and taken them as his own, so I can go and sleep.

So apparently painting is one of my new coping skills. Do you have a non-medical coping skill you use during times of high pain levels?

 

Operation FITYMI…

Fake it till you make it. That’s the motto for today. After a week of chest colds and increasingly bad face and head pain I am pushing through. Ok, I am trying at least.

Last night ended somewhere around 6:30 am with me watching the first half of PBS Masterpiece’s Rebecca. Sleep wasn’t happening. Each time I would feel tired enough to turn out the light I would curl up and the pounding in my head would become the sole source of sensory input. It would pound and pound and pound and pound…

So instead of trying to find a way to sleep through my body’s version of a late night Blue Man Group performance I decided I would just watch something until I could not keep my eyes open.

As a person with photo and audio phobia at times like these it’s interesting to turn to the tv for distraction. I had to put the sound to a level that didn’t cause pain but also didn’t make me strain to hear. I had to significantly lower the brightness on the screen. However, after these things were accomplished my headache and I dove into the mysterious and potentially murderous passions of Maxim DeWinter.

When I awoke this afternoon it was to more strong pounding and a desire to sink into bed and never get up. At moments like this I borrow from the Hunger Games. After Rue has been killed Katniss goes into a quasi catatonic state in the arena. When she comes back to herself she does so with simple instructions.

“It’s time to get up Katniss”, “It’s time to drink water Katniss”.

When I feel that desire to sink into pain and lose the day I follow her example. “It’s time to get up Katniss.” It’s time to shower Katniss”.

This is how Operation Fake It Till You Make It began. (FITYMI) I have canceled virtually everything this week because of pain. I have accomplished very little. I actually went 7 days without a shower before somewhat abashedly discovering that fact. (Thank the goddess for lavender oil) So it’s time to use the routines of a healthy Misty to get out of this hole.

I showered. I put on makeup and did my hair. I put a goddamned bow in my hair. I dressed in something other than pajamas. I put on lipstick. I ate. I made my bed and grabbed my computer and checked email.

Do I feel better? No. No I don’t.

Do I feel like curling up in a ball at the bottom of a well until the world slowly seals me over for a lifetime of eternal darkness? No, not anymore, not today. Even if all I do today is stay in bed and watch my quietly dimmed television set my mood is more determined. I am once again ready to continue this never-ending grind of a fight.

So my fellow spoonies: It’s time to get up.

Spooooooons…

So I had intended to write about my progress from healthy, fully functioning member of society to managing life as a spoonie. Unfortunately learning to manage life as a spoonie has been an increasingly time consuming prospect.

I have had periods of increasing levels of energy. Of course, they last long enough that I get greedy and push myself to accomplish more, see more people, etc. As a result they are inevitably followed by a sudden and unavoidable crash into the wall and days, if not weeks, of virtually no accomplishment at all. I have got to get better at reigning myself in when I feel better so I don’t crash as hard when I don’t.

Interestingly I am beginning to believe that the first casualties of climate change may be us weather sensitive spoonies. As the weather patterns in Denver shift from our traditional indian summers into a moody series of summer storms reminiscent from my childhood I have been laid low by pressure changes more often than not. While my body relishes in the lower temperatures my head throbs and squeezes and beats it’s unrelenting tempo with increasing levels of pain. Are we in for an increase in symptom frequency and unreliability as our world’s weather patterns shift to accommodate our greenhouse gasses?

Regardless of the cause of the increase the symptoms are getting harder to manage. I am determined to revive my blog, despite the sense that I am whining. So I will try to say something, anything, here a couple times a week.