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.