Everyday is about adjusting my sails…

Freaking truth

Pain… yesterday was a high pain day. It was a high pain day that I had to power through. I wanted to curl into a ball and cry but instead I had to smile and interact. I couldn’t do my usual cancel everything so I can hide on the sofa popping narcotics every 4 hours praying for a meteor from space to come kill me. It was beyond exhausting and stressful.  I feigned functional adult though and for that I’m proud. I push myself hard everyday but days with severe pain are even harder.  

Living with chronic pain is… well… shitty. One day it could be reasonably controlled using modern medicine and the next day I could be unable to leave my bed. No rhyme or reason… it’s just how it goes.  I can’t really plan things with out the disclaimer “if I’m feeling decent”. I go to bed at night wondering what level of hell I will wake up in. That’s if I sleep at all. Most nights I either toss and turn or give up and lay awake thanks to pain and anxiety.  

Going out places requires planning. Will there be someone to drive me home if I have to take my strong meds? Will there be a place to sit? Will there be a quiet place to be for a minute if things get overwhelming? Will I be with a friend who will understand when I want to leave early? Can I fake a smile through feeling shitty so people don’t get put off?  Are people going to think I just want sympathy?  I’ve started just avoiding shows and other social activities that I used to enjoy.  

I feel like a drug addict. Traveling… even just overnight… means bringing multiple bottles of pills. I have to take my narcotics everywhere. If I’m gone for more than 8 hours that means I have to bring other meds too so I can stay on schedule.  My purse sounds like an 80 year olds.  

Much of the time my meds make me feel mentally dull.  I try to take the very minimun… just enough to take the edge off because I hate feeling dopey… but I hate being in pain more.  “Can’t you just deal with the pain” a former friend asked me once… worried I was going to become addicted.  I’m well aware about the risks of addiction but until you’ve been in a public restroom laying on the floor praying for death because you didn’t bring your meds with you and you were 2 hours past your scheduled dose please don’t lecture me.  

Most days I can sort of function thanks to my meds yet other days I can’t do shit. That’s honestly the hardest part of this illness. Gone are my days filled with physical activities like weight lifting, boxing, horseback riding, rock climbing, surfing, and every other hobby I had.  Gone are the days where I could just go go go then party all night.   Instead it’s pats on the back for getting out of bed, showering, and especially leaving the house.   That’s pretty shitty for a 30 something woman… that’s life though.  

My heart still beats and (thanks to a medication adjustment) my brain still works so it could all be worse.  I’m blessed to have awesome room mates who help me more than they know (huge step up from an abusive and neglectful husband), once again live close to other friends so it’s easier to see them and be social, and thankfully live near places that bring me great joy.  Tomorrow could be better… or it could be worse.  All I can do is pray and attempt to sleep… and thank God for that first breath in the morning.   

My life has done a massive 180 but it’s gonna work out if I can just keep myself from myself. I’m trying to learn how to be kinder on myself… to remember that I’m not lazy… that I ACTUALLY NEED rest.   I’m blessed with amazing friends who call me out when I don’t take care of myself and provide comfort and support.  The really good days are rare now as the bad days become more frequent but I have to keep hope that one day the storm will end and I will be left with strength and a story. 

With help I am standing in this storm. My favorite quote… human in picture is Stephanie Wall. Picture was taken during a performance. She has become one of the greatest friends I’ve ever had due to her unconditional love and support during this rough time.

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