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.

Broken… a haiku

muscle memory

sense of who you are inside

liars, all of them.

 

new limitations

heartbreaking in their number

pull you down, down, down.

 

despair becomes you

inner screaming, outer smile

hide it from the world.

 

learn to be broken

make mosaics of your self

see beauty in cracks.

 

be your creator

build something new within you

make your broken whole.

 

new self emerges

introduce yourself proudly

you have survived.

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Holi-daze

Getting through the holiday season is like walking around with a backpack on. Oh yeah, and that backpack is full of rocks. You initially start the season with a rock or two in it if you are lucky but by the time New Years Day comes along your backpack is filled to the brim with nasty ass rocks and you are nearly crushed under the weight of it.

It begins with the normal spoonie issues; a. making sure you rest enough to handle the additional socializing, present getting, baking, cleaning, etc. b. making sure you eat right so you don’t trigger anything, c. making sure you get enough exercise, d. making sure you have rescue meds on board.

Once you have those dominoes in place you sit back, cross your fingers, and push the first domino down. Being a smart spoonie you started planning for gifts early, you ordered most of them online, you did everything you could think of to avoid a store during the Christmas season. Inevitably, like death and taxes, there was somewhere you ended up having to go to make sure you didn’t actually forget that cousin or family friend you can never remember to buy for but who always gets you something. You went into a very busy store with very florescent lights and very loud holiday music chock full of very tired and angry people. You left with what you needed and a few extra rocks in your backpack. You came home, you wrapped said gift. You sat and felt the added weight settle around your shoulders.

Next you attended a holiday event. You shifted the backpack around so it was at it’s most comfortable and tried your best to ignore the extra weight you were carrying as you put on your very best smile and tried to engage in meaningful small talk with people you do actually love to see and talk with. You tried your best to make sure the backpack full of rocks wasn’t really noticeable. You laughed and enjoyed yourself, shifting the rocks around from time to time to reduce stress on your back and neck. When you got home that night you crawled into bed and noticed that some asshole had slipped another rock into the damn backpack.

Maybe you baked pie or cookies or made dinner next. Perhaps you cleaned your house so when people came by they wouldn’t find out what a desperate slob you are when your choices are rest or cleaning. Despite all your best planning and careful practice you suddenly find yourself spending spoon after spoon on things you hadn’t planned on spending them on. Your kids are hyped up because PRESENTS!! and your pets are peeing on the floor because it’s really cold outside and who would want to pee out there? and your trying to keep up with mundane tasks like laundry in addition to everything else and you keep falling into bed so tired you are pretty sure you were sleeping during the last half of the day.

Each task adds a rock to your backpack and every time you begin a new task you have a harder time ignoring the huge weight pulling at you. You take your rescue meds and hope you can still enjoy some of what the holiday has left to offer. You manage to engage but now everyone can see how heavy your backpack is and you are having to rest a lot and can’t participate as much as you would like. You start having the conversations about your health and disappointing all the hopeful faces who really want your being there to mean you feel great. You struggle to hide as much of the discomfort as possible so as not to take up too much emotional space during the holidays.

Finally you long for January 1st when you can crawl back into your cave and hide until you have emptied all the rocks from your backpack and are once again thinking you can emerge into the world without appearing to be miserable.

You had fun, you saw loved ones, you made memories and you are so glad it’s over.

 

Basically you’re kicking a sick puppy…

One of the hardest things for me to do when I became chronically ill was keep a ‘chin up’ attitude. I felt put upon all the time. It was grossly unfair for me to hurt so much, to lose so much, to feel so isolated, etc. It was at it’s worse whenever I got sick or the kids got sick, or something fell apart. It felt like I was already dealing with so much why did this thing have to happen too?

It took years. I had to cancel Facebook for six months. I had to hide away from mostly everyone in my life for a while. I had to adjust to the new normal so that hurting all day every day was the baseline, and one I could actually work from.

I did it. I am here. I can smile and feel pretty damn lucky about my life even though I have chronic illnesses.

There is only one nemesis out there that still wins in the battle over my cheerfulness. The common cold.

I hate the common cold. I become a whiny put-upon little bitch when I have cold. I don’t know if it’s because a low fever makes my already achy body screamingly achy or if it’s because colds seem to bring out the small child in all of us but I cannot keep a smile on my face when I am sick.

It feels like I am being kicked when I’m already down. It’s as though I have come to terms with feeling yucky all of the time so damn it world don’t make it worse! How much yucky can one person take?

I also struggle more when I’m sick because I can’t do the minimal things I normally do, so it feels like a backwards slide into the years of being able to do very little indeed. Of course then I risk flare ups when I feel better because I have that urge to ‘make up for’ the days I missed when I was sick.

So despite years of mentally preparing myself of a very different life from the one I imagined, I am basically a puppy when it comes to colds. Nature is a big bully who just took my chew toy, kicked me in the head, and is pointing and laughing while I whimper pathetically on the ground. Viruses are jerks.

 

Fibro fog… and the other stuff I initially forgot to write about but eventually remembered.

I was going to write a blog post about something but as soon as I sat down to do so the topic flew my mind.

Here I am, computer in lap, preparing to wax poetic on something pertaining to … well … something, and instead my mind is a blank slate. White. Clean. Boring.

Don’t you hate losing the ability to think? It’s making me quite insane!!

Ah yes… it’s coming back to me a little. I was going to write about things we can do to make the world a better place, even if we have little energy to leave the house. Take that fog!

I was shopping for holiday gifts when I realized I was doing two good things for the world while doing so. On AmazonSmile a portion of my purchases goes to a charity of my choice (for me it’s always the Southern Plains Land Trust) every time I buy something. I buy more Joint Comfort Tea, SPLT gets a small percentage. I buy a new hot water bottle, more money to my chosen charity. A tiny bit of good doing for absolutely no extra spoons.

Then I popped over to The Rainforest Site and started clicking the buttons. The GreaterGood store has some pretty awesome stuff that is fair trade and benefits animals, the environment, veterans, the hungry, and many more. Best of all, all you have to do is go to the website and click their pretty shiny buttons every day to make a difference. You can go further and do your shopping there to increase your impact but if you don’t you still make a difference.

These got me thinking about FreeRice.com, where you can practice your vocabulary and stretch your brain (which I obviously need) while donating rice to the hungry. For free. You can do it in other languages too, which is how I started practicing my Spanish.

So there, three things you can do from your bed while you feel like shit to make the world a better place. If you can remember to.

Now where did I put my phone…

Spoonie tips and tricks… Part 1

It’s been a hellish week here in Colorado. Fall has officially fallen and with it comes the inevitable pressure change induction flare-ups. I’ve been rendered pretty much useless for a week now, which begs the question, what the hell do I do to manage the pain since I am not taking lots of medication?

Here are my tips and tricks for managing a high pain flare-up:

Stop fighting the pain.

Have you ever been to the ocean or in a water park wave pool? You know how you can be standing up in the water pretty balanced until you get just deep enough that the combination of undertow and waves will knock you on your ass, every single time? Pain is like that too. The harder I fight the pain the more exhausted I get. Instead, I try to float on top of it, just like waves in the ocean. I go limp, I relax, and I imagine myself riding the waves. The better I am at this the more I can push the pain into the background.

Now, if the pain is above a 7 I am not going to be able to do much other than relax and push it into the background. This technique takes a lot of mental energy and can be very exhausting so it’s not a coping mechanism that allows for a full plate of activities. I can use the technique when the pain is lower and work and such, but not when it’s really bad.

Movement is my friend. 

Lying in bed is bad. My fibromyalgia pretty much makes my legs, hips, shoulders, ankles, and arms hurt after a normal night’s sleep so spending the whole day in bed isn’t a good idea. I move around. I have two 3 pound weights next to my bed that I use while I am watching t.v. I do curls, triceps, whatever I can to keep moving around. I also have a solid memory foam knee pillow I use at night to sleep. During the day I place it between my feet and slowly squeeze it. I also try to walk the dog every day.

Ice Ice Baby. 

Nothing is better than an ice pack on the back of my skull. I’m pretty sure I have signs of frostbite under my hair because of the amount I time I spend icing.

Binge watching t.v. is good.

I have a few favorite movies and shows I go back to when I am desperate and need to fall into a story but yet am not able to pay much attention to it. However, the rest of the time I like to pick a new show and watch several seasons of it. This allows me to lose track of the amount of time I have been in pain.

Treats. 

I’m currently on a diet so I can lose enough wait to have breast reduction surgery. (Yes, I am giving in to the wisdom that having less for my back and neck to carry might help my headaches.) As a result I am pretty strict about calorie intake most of the time. Unless I am in the middle of a several days to week+ long flare. After a couple of days I am looking for anything that will make me feel emotionally better so I can best withstand the onslaught.

Yesterday it was a GF pecan pie from Whole Foods. I ate half of it throughout the day. It’s all I ate, there was nothing remotely nutritionally redeeming about it, and it helped me feel pampered. I am pro-treat.

Tiny, fun tasks. 

I get squirrely after several days of zero accomplishments. I start to get panicky about being stuck like this forever and of course panic makes it all worse. So, I try to do small fun things that are on my to-do list. For example, today I set up a few of my Halloween decorations. It took about an hour, with lots of rests in between, but at the end I had enough up to feel I had done something, I got out of my room and into the rest of the house, and I had a bit of fun.

There are more tips and tricks I use but for now I am going to get off the computer and back to distracting myself with “The Unbreakable Kimmy Schmidt”. Best of luck to the rest of you, I hope you are not dealing with flares. If you are, you are not alone.

An inconvenient volcano…

I was having a lovely conversation this evening over dinner with several friends. One of my friends was talking about her son and how angry he is over some very reasonable things outside his control and how difficult a time she was having with her own anger about said things and his when I suddenly admitted something out loud.

I am really angry.

All the time.

I talked to her about the anger that has been ever present deep within me since my body became a traitor and a prison and a horrible place to live.

I explained I used to live with this ever burbling volcano of anger that threatened to spew itself all over whatever I was doing at the moment but that I had grown to exist with it instead of against it.

She was shocked. She said I seemed to be so calm all the time. I agreed. I explained that extreme emotions have a tendency to send my migraines up into the 11’s so I attempt to manage my feelings so that I can minimize the damage they cause me but that doesn’t mean they aren’t there.

They are there. The anger is there. The burning, burbling, white-hot, fury at my situation is always there. It has tea with me on cold days and toast with me when I can’t manage to make a real breakfast. Sometimes, it even helps me.

Sometimes my anger is why I go for the walk when my body is screaming at me to stay in bed.

Sometimes my anger fuels my art and helps me push myself.

Sometimes it stops the despair.

However, it used to threaten to consume me. It was this nearly out of control feeling just under the societally acceptable veneer of control. It was burning out of control beneath a calm surface of acceptance. It was there because it’s not cool to lose your shit in the grocery store and scream at the ice cream because you can’t work anymore. It was there because no one actually wants to see you throwing all your breakable dishes at the ground. It was there because at after age 6 I was no longer indulged when I beat my fists against the ground and screamed about my really unfair situation.

The anger lived a much stronger existence because there was societal pressure urging me to hide it.

I believe, to this day, that if I had been able to throw an anger party, an event where I had my closest friends come destroy shit with me while I talked about how fucked I was, I would have gotten to a point of acceptance far sooner.

Instead I had this monster eating away at me and threatening my calm when the coffee ran out, or the internet got a little slow, or the dog peed on the floor. It was barely leashed, straining against my control, for years.

It didn’t become an ally until I accepted it. Until I was able to let myself give up the Pollyanna shit and really live in the anger, really acknowledge I deserved to be mad. Once that happened a lightness entered me. I was free of this tethering feeling because I had incorporated it, instead of trying to fight it.

We suck, as a society, at dealing with negative emotions. We hate being angry, sad, you name it. We are happy or we are doing it wrong. Period.

I’m here to tell you to let your inconvenient volcano explode. Revel in your anger.  Let it wash over you. Cry, scream, stomp your feet. Be mad. You’ve earned it.

Once you do that, you can aim it’s energy at other endeavors.

 

The crush of fall…

I love the fall. It’s by far my favorite season. I love the rain and the mist and the cooler weather and fuzzy sweaters and tea.

Unfortunately the fall doesn’t love me. The rain and mist come with pressure changes that make my head feel as though someone is trying to crush it, unless it feels as though it’s going to explode.

I try to enjoy the fall, I break out my super soft sweaters and leggings first chance I get. I don my ultra thick fuzzy slipper socks and wrap up in my soft pink muppet shawl. I curl up with pets and coffee and try to relax.

It’s just harder to enjoy it. My jaw stabs in little reminders that the pressure is shifting, my head aches with an increased dull throb, and every little sound makes me want to kill.

Winter will be worse. Snow storms bring the worst in pressure changes, pregnant clouds will beat down upon me until finally releasing me when the snow actually falls.

There will be days spent in my room, curled up next to my cat, fireplace on, wishing I could do more.

For today I am pulling in the feelers, retreating into myself.