When Feeling Better Doesn’t Feel Good

by Ariela Paulsen
Mighty Well | Chronic Illness | Ari

After a flare up, there’s a moment when it’s clear things are turning around.  I sense my energy coming back and think “yes! I’ve made it through!”  I picture the days coming just around the corner, picking up where I left off on work, relationships, and hobbies, all with energy to spare.  Happy.  

And, sometimes, that’s just what happens.  After a week or two of symptoms bad enough that I just have to let myself rest, I often do bounce back better than before, raring to go. 

But other times, I don’t.  Longer flares can leave my energy depleted to the point where I will have to rest even after the symptoms subside.  When I’ve spent weeks unable to do any form of self-care other than laying down with eyes closed for hours straight, it’s challenging to get back into other patterns.  And when work (of all kinds) has been neglected for that long, coming out of a flare means that I am now responsible for attacking a mile-long list of shoulds.

It’s hard to remember how challenging this return to life can feel unless I’m in it.  I spent the last month or two with debilitating nausea.  I couldn’t make it through two hours a day of teaching.  I couldn’t sleep at night, then kept falling asleep throughout the day.  Meals became a battle.  I couldn’t focus on anything, couldn’t fathom seeing friends, couldn’t sit up long enough to paint.  I was miserable and becoming depressed, but I kept thinking “if I can just get rid of the nausea, I’ll be happy again!”  I then tried a medication that actually fixed the problem (a phenomenon that rarely happens in my experience!) and, overnight, felt like a person again!  I suddenly had several more hours of energy each day.  I could shower, eat, stay awake throughout the day, work, exercise…

And yet, I still wasn’t happy.

It felt devastating.  I couldn’t understand why I could still be miserable when my body felt so much better.  What was wrong with me, that I kept sitting around doing nothing, now that I had the energy to be doing anything?  

It took me a few days, but I figured it out.  I was overwhelmed by work, living in a space that desperately needed cleaning, and simply out of practice with living my life.  I couldn’t work up the motivation to set up my paints, find a new book, or reestablish a routine.  I was desperately lonely, having barely socialized in weeks, yet didn’t have it in me to get back to seeing people quite yet — especially not during this pandemic, when figuring out how to socialize takes up the energy I would’ve spent on the actual activity.  

And through all of this, I had brutal expectations pommeling me every time I didn’t live up.  I slept well last night, so I should’ve gotten up before 11:00.  I’m no longer holding back vomit, so I should be a more engaging teacher.  I have energy, so I should be exercising for at least an hour every day.  And the most brutal expectation: I should be happy.  

I finally accepted that, no, I’m not happy.  I’m not motivated.  I’m not efficient.  I’m spending far too much time sitting on the couch doing nothing.  I spent an hour one night brainstorming what actions I could take the next day to change how I felt, and deciding which of those actions I felt ready to take on.  I wrote schedules for each day that week to reestablish routines (but still blocked in rest times just in case).  I got my art supplies out so that, if I ever did feel up for painting, I’d be ready to go.  I set up a walking date for the next afternoon.  I trusted that if my days started to be filled with things that made me happy, I would start to feel better over time.

But I also accepted that it might be awhile before I feel happy again, and that’s ok. I’m still grieving from the weeks lost, still undoing the patterns that I’d built out of self-preservation.  The world is grieving, trapped and isolated within a pandemic.  I’m still afraid, never quite sure when my symptoms might return.  I had a good cry with my therapist, in which she offered that maybe these aren’t problems to be fixed, but just sad realities that can’t be resolved quite yet.  

I try to end these ramblings with a solution, something you can do to make it better.  I’m not sure I’m there yet with this one.  I haven’t quite passed from noticing into improving.  But I think the more I am aware of this response to coming out of a flare, the easier it will be to move with it in the future.  Maybe writing this will provide a reminder — to myself or others — that these feelings are valid.  Or maybe by reading this, you will find solace in knowing you’re not alone.

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