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The Roller Coaster of Emotions to Chronic Illness Acceptance

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I spend a lot of time reading articles, memes and quotes on what it’s like to live with chronic pain and fatigue, hoping to find the magic words to capture the essence for me, but I never quite do. Don’t get me wrong — many thoughts and quotes resonate deeply with me, but as I’ve come to realize, everyone’s story is truly their own. So this is mine.

For me, pain and denial go hand in hand. I spend so much time pretending to be “normal” that I almost believe I am. I’m then genuinely taken aback when I’m floored by it.

I can have a handful of “good” days, and by good of course I don’t mean pain-free but days where the pain is mostly background noise, where the fatigue is minimal and where I can, more or less, do what I need to do. I know not everyone has even one of these days, let alone a few, but every time it tricks me. I start to believe, “Yeah I’ve got this, I’m pacing, I’m grooving, I can do this. I’m so winning this chronic pain life.” And then it gets me. Every. Single. Time.

Sometimes the flare is like a bolt from the blue. It’s standing from the sofa and realizing I can’t walk. It’s waking in the morning as if I’ve been drinking heavily for hours and the fallen down.

It’s sitting on the sofa for a “quick five minutes” and waking up four hours later.

Other times it creeps up. It’s the discomforts that grow. It’s the inability to get comfortable in bed because lying on that side hurts my hips but the other way hurts my neck, lying on my back causes spasms and lying on my front makes me nauseous with pain. Knowing that whether I give in and get up or if I finally fall asleep, tomorrow is not going to be good.

And it hurts. Not just physically, ‘cause you know, chronic pain… but emotionally. Mentally. It’s a crushing disappointment that I’ve got to change the day or week or project plan and dammit, it’s not fair. I had it. I just had it. I was in control! But it’s gone, slipped from my grasp without warning.

It’s a grief I keep experiencing when I have to say no instead of yes, even if the invitation is just a 20-minute cuppa with a friend because I need every one of those minutes to rest. Then the anxiety creeps in that I might lose another friend, miss out on the next invitation, become an outsider to the life I am so desperate to be part of.

It’s the worry that my employer will finally have enough of my illnesses and limitations when I have to switch a face-to-face meeting to a teleconference because I only had the energy to work that day, not get dressed and drive to the office, too. Or the embarrassment explaining to a new colleague why I have to take the lift just one floor or drive the three-minute walk to the neighboring building when yesterday I could walk twice as far just fine.

It’s the guilt I feel when I’ve snapped at the children all afternoon because that discomfort isn’t a discomfort anymore, it’s a fire in my belly and a knife in my back, and I just can’t process their questions, mediate their squabbles or tolerate their elbow-y cuddles.

It’s a snarling frustration, at myself, the illness, that I just can’t do it, whatever “it” is, no matter how much I want to. That I’ve got to stop right now and lie down. The pain, the fatigue, it wins.

It’s that feeling of uselessness when my daily “things I need to do” list is already pretty small and I’ve used up all the help offered or paid for today for the cleaning, school run and cooking, so why do I need more? Why should I? That I’m already a shadow of myself, not the me I “should” have been and the me I keep convincing myself I still am. And then I feel like a failure. ‘Cause I don’t have it. Not at all. It has me. And every time I forget, it reminds me, sooner or later.

I get through these “down” times eventually, sometimes during the flare itself but most often some time afterwards, and I tell myself I’m not going to forget again. I’m going to remember, I’m not going to get complacent, I’m not going to let it surprise me again because it’s just too hard to keep getting my head around. But do you know what? Those few days when it is under control, and I do have it and I believe it will always be this manageable… they’re golden. So for now, on this roller coaster route to acceptance, I need those golden days of denial, the hope those days of pretending gives me, the days when I believe I’m “normal,” that I’ve I got this under control — because one day, I truly will.

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Originally published: April 2, 2017
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