It’s another NSAID and coffee cocktail for breakfast this morning WordPress. I considered not writing at all as yet again, my brain feels like it’s about to spill out of my ears. But I promised myself I would. Living with a chronic illness is like walking a tightrope between giving up the things you can’t do anymore and holding onto the ones that matter, all to maintain some quality of life. I haven’t always been the best at this circus act. After years of jumping through hoops, walking through the fire, and lying on beds of needles, my body is tired. I am tired. But I only have two options.
To live or not to live.
After spending years on opiates for the pain and fantasizing about blowing my brains out many times because the drugs robbed me off my sanity, I knew I had to do something different. I knew I couldn’t live like that. I knew I wouldn’t continue to live if I continued to live like that. So I stopped the pain killers and just dealt with it the best I could. Some days this has put me down, unable to function because the thought of leaving my bed was far too great a feat to accomplish. Some days have been good and I’ve been able to function in spite of the pain and use this mind, which is now on my side in absence of the drugs, to the best of my ability. Some days I’ve cried into the arms of those who love me because I couldn’t imagine living one more day in the pain I was in. My point? It varies. My mental outlook is based off of:
- My pain level that day/week/month
- The success I’m currently having in cycling various NSAID’s
- Whether or not I’m in a flare up
- How many things I’m doing that I enjoy or that otherwise better my quality of life.
You may think that 1-3 are the most important, but they’re not. I’ve found that the first 3 are all subjective and can be made to seem better with proper implementation of number 4, “better quality of life” activities. What I mean by that is, if I have a day where I do feel even remotely okay I try to go out with my boyfriend, hang out with my friends, or in some way participate in my own life, even if I don’t completely feel up for it. I have seen too many times that if I stop living I get suicidal, fast. So while I may be utterly exhausted at the end of going shopping with one of my girlfriends or having dinner with Ryan, I do it anyway. Because a life not lived is not a life at all.
So I write to you today from my front porch, chain smoking as usual, with coffee in one hand and my phone in the other. I thought for 20 minutes or so about whether or not I should writing this “Morning Mindfulness” post at all. I felt like I didn’t have anything positive to say because of my pain today in combination with these migraines I keep waking up with. I told myself “no one wants to hear you bitch”, “just don’t do it for a day… It won’t matter”, and “you don’t have anything inspired or profound or good to say today, so just don’t”.
And then I grabbed my coffee, my smokes, and my phone and did it anyway. Which is basically the story of my entire life. I’ve always been the one to put one foot in front of another, even when everything in me screamed not to. I’ve always been the one who couldn’t give up, even when I wanted to. I’ve always been a survivor. Now I realize that writing this post on a rough morning is far from anything that could be recognized as survival instinct by the naked eye; but for me, it is. Because I know what you couldn’t and shouldn’t be expected to.
I know that days of not doing what makes me happy add up. I know that they pile atop me like boulders on a crippled old woman and that in time, if given the chance, they will crush me. If not my body, then my spirit. I know that little things like enjoying my coffee, writing each day, and going to dinner even when I don’t feel like I have the energy are the only reason I’m still alive. This is the only way I’ve found to combat the only deadly part of this disorder that exists, the mental game that’s played, hidden in plain sight from those who love me.
And so, I write; even when I have nothing inspired, profound, or good to say. I write, even when my hands are so swollen that my once loose rings are now cutting off circulation. I write, even when I’m crawling in my own skin and my clothes feel like sandpaper on raw flesh. I write, even when I’m moving from one end of my couch to the next and then to the floor and then to my bed, all in attempt to find a way of sitting that masks the way my ribs are protruding from my abdomen like something out of Alien, causing me pain that I can’t find a decent way to sit in. I write, even when the mental game gets the best of me and tells me that I “have nothing to say”. Because so long as I write, chances are, I’ll keep living my life and I’ll be more happy doing so 🙂
by Ashley Hebner
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Featured image courtesy of: http://www.goodtherapysandiego.com/chronic-pain.html