And some days just suck…

This is not the blog post I wanted to make but it’s one that I need to make…
Today is bad. Today I don’t want to leave my bed because I’m in so much pain. Today I honestly want to die. I had a run of good and decent days so this was bound to happen. Last night it hit like a brick and hasn’t let up. 

I feel like every time one of these bad days hits it knocks the wind out of my sails. Every time my body hits this wall I wonder how many more bad days I can take. At what point do I say enough is enough?  

When you know your most likely never going to be healthy again you realize your life is literally just enjoying the good days as they become fewer and fewer. Yes most days I can get out there and slap a smile on my face pretending things are great… but that’s not how I feel most of time. 

So how long does one suffer? How many bad days does one face alone in bed while the world moves top speed around them? It’s funny how when you feel like this how many of your friends forget you. It’s easy to forget someone who has to stand still. It’s easy to walk away rather than stand by someone when it gets uncomfortable.  

So today will be a day of rest… a forced day of rest. It will also be a day of tears. This is the part of a chronic illness or chronic pain people don’t want to see. This is the part we all try to hide. This is the part we try to slap a smile over so people don’t uncomfortable.  

One day it will end. One way or another. Either the bad days will become too much or a cure will be found… but thankfully one day it will end.  I take comfort in that. Now excuse me while I withdraw from the world…

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.

What… I can’t look good?

Sensible fancy yacht selfie… holy boob sunburn

It’s simple… a friend asks how I am… I answer and they say “You still look good”. I am torn between cringing and saying thank you. Life with a chronic illness sucks on so many levels but the worst part is dealing with societies expectations of what should be happening. 

Many people feel that if you are truly sick you rot away in a hospital awaiting death or recovery. How dare someone fight through pain and illness to enjoy life… how dare someone stay active with doctor supervision.  

TV paints the picture of someone with cancer, for instance, as being bald and sitting in a hospital hooked up to IVs awaiting death. Did you know only a small percentage of chemotherapies can actually cause hair loss? Did you know that they try to keep cancer patients out of the hospital for their safety? Did you know that it is super important to stay active when fighting cancer?

Society looks at someone who doesn’t fit this picture the world paints and says they are faking… they just want sympathy. This drives a wedge between the ill person and society. It isolates them. This is one of the biggest complaints among the chronically ill. Isolation is already caused by things like lack of working, having to stay home more time, perhaps an inability to drive due to meds… etc. Isolation is the biggest cause of depression and hopelessness. Society simply adds to it. 

I’m thankful I still look good. I don’t look anywhere near as good as I did 2 years ago. It hurts to look into a mirror but I’m getting used to the changes. I’ve also learned not to go out on the bad days when I have to be doped to the gills on pain meds or am having confusion issues due to my meds. You learn to just smile and go forth when you can. 

Living with chronic illness or chronic pain is already hard… society simply makes it harder. Don’t be a dick. Most people don’t want sympathy… empathy perhaps… understanding during the bad days definitely. I’m thankful for my close friends… I’ve learned to ignore the haters… and I thank God everyday (usually after a good cry) that I still look as good as I do. I eat right, push through the pain when I can to stay active, and have learned to keep to myself and close friends about my struggles.