What a "Bad Brain Day" Feels Like from the Inside

NOTE:  I started Ketamine Infusion Therapy on January 2, 2018.  Treatments are initially administered multiple times per week, and then slowly spaced out over more and more time as efficacy increases.  This was written in early February, 2018.


I was going two weeks this time between treatments (for the first time).  And I’d been feeling REALLY good.  The most like my “old self” I can remember feeling in this whole wild ride (I first sought medical treatment a year before in January 2017, though I'd been seriously ill for at least 6 months prior without recognizing it).  I started saying I was in remission.  Which truly felt like the right word as I said it at the time because I don’t know if it will come back—tomorrow or ten years from now—but for now I’m in remission.  And as much as I said that…I didn’t really mean “tomorrow” as a possibility.

That’s the thing when your brain is what doesn’t work.  When the meds or treatments are working, it’s hard to remember that, well, your brain still doesn’t work, it’s just being treated.  You start to doubt—maybe a little, maybe a lot—that you were ever really sick.  Maybe it was all in your head.  Maybe you were just lazy for a while.  Maybe you’re “over it” now.

As much as I said, “I’m in remission!” some part of me thought/hoped I was “cured.”

The day before my two-week apart treatment (a Wednesday), I started to feel a pinch emotionally unwell.  But I’d gotten some body work, which can loosen stuff up, so I didn’t panic, went to therapy, had a great session, felt good after, and then crashed into post-therapy exhaustion and went to bed early.

The next morning as I slowly stepped into my day, I noticed that I didn’t feel quite right, and I thought to myself, “I’m glad my treatment is today.  Perfect timing!”  I also decided I’d go easy on myself that day—no workout, gentle goals.  Then the office called and said that the nurse was sick that day so we had to reschedule for Monday.  I noticed feeling significantly disappointed, but surrendered.

By mid-afternoon, I realized that I REALLY didn’t feel well.  I assume this is impossible for someone who has never experienced it to understand, but I just felt like I was under water.  Can’t quite think right, I move more slowly (or the thought of significant physical energy exertion is laughable)…there is a physical sensation to it to sometimes, though I still haven’t quite found a way to articulate it.  It’s a sensation in my head, maybe my face.  Not pain, not a headache.  A thickness.  Not quite a buzz.  But something.

As I learned in my relapse this winter, which led me to Ketamine treatment in the first place, when I recognize that I am feeling this way, I surrender to it.  This is in contrast to my entire adult life where I FORCED myself to push through.  It wasn’t acceptable that I didn’t feel well (especially when it’s a vague, but pervasive, hard to explain “way” of not feeling well); I knew what I “should” be doing every day, so I just made myself do it anyway.  You probably won’t be surprised to hear that that approach is MISERABLE.  As in causes a lot of misery.  It would be like if I had a breathing-related illness, and on a bad symptom day, I just did everything anyway.  Obviously that would make me feel worse—or maybe be dangerous.  I’ve learned to treat my brain-related illness the same way.  If I have a symptomatic day, I rest.  Like lay in bed and watch TV the rest of the day rest.  Honestly, I’m not capable of doing anything else.  Trying to act like I’m not sick is when it gets worse.  And with a brain illness, getting worse looks like overwhelm, rage, crying, hysteria.  The kind of symptoms (some) people recognize as “mental illness” (a phrase I hate, which is also anther article).  I know what that looks and feels like.  And it doesn’t help me get better.  So I’m just going to watch TV until I feel different.

I cancelled my shift driving for one of the dozens of food delivery services in the city that night (hell no), and gave myself a break to lay down and watch TV, hoping that I’d get a little resilience or clarity at some point to finish prepping for my work presentation the next day and do the editing I’m supposed to do for my colleague.  That resilience never arrived, so at a certain point, I did have to make myself type up my notes for the presentation and print some handouts.  Observing myself do this was fascinating.  This shit is not in my head—I really didn’t feel good.  I move slowly, think slowly.  It doesn’t hurt to think, but it’s like I can feel myself thinking—probably because it takes an unnatural effort.  I got the minimum done for my presentation, accepted that I wouldn’t be editing that night, and said a prayer that I’d be functional enough in the morning to get through my presentation.

I felt ok Friday morning and was deliberate in the way I tended to myself.  That probably doesn’t make sense to most people either, but it’s a way of watching what’s happening inside, conserving energy where possible, not overly focusing on sensations or behaviors “of concern” (things that I feel or do when I feel sick), and kind of running an almost sub-conscious pep talk sound track in the background at all times.  My presentation went well; I had a second meeting teaching TRE® to a colleague whom I really like, which also went well, and then headed home.  I still felt ok!  I noticed a mild desire for a nap, which was immediately followed by realizing that I hadn’t desired (or taken) a nap in at least 2 weeks—a contrast to Nov, Dec, early Jan when I napped almost every day (and to my story about what I “need” in the winter).  Instead I lay on the couch and read the documents I needed to read to prepare for work the next day and afterward found that I had the energy to do my workout, etc, and do a food delivery shift that night.  (This is a pattern I have when I have at least fairly good resilience—noticing that if I rest a bit, the energy and desire comes back to do what I want/need to do.)

On Saturday morning, I noticed that I “wasn’t sure” how I was feeling.  In fact, that’s what I said to my roommate when they said, “Good morning, how are you?”  “I was sick Thursday, fine yesterday, and today I’m not sure yet.”  I had that slightly “turned down” feeling and low energy/fatigue/like your legs weigh a few pounds more than normal.  (Not a ton, mind you—but a few pounds too heavy.)  I had two clients scheduled that day and noticed some concern that my brain wouldn’t work, that I wouldn’t be able to show up for them adequately.  Both sessions went very well overall, and/but I noticed my symptoms in both.

The first session required me to be slow, deliberate and keep my energy at a slightly turned-down volume as it is to make sure the client isn’t overwhelmed, so I think that helped.  I noticed the long (they feel loooooooooonnnnnnnggggg) pauses when I go to articulate a thought or a question that happen for me when I’m having a “bad brain day,” as I call them.  I guess one victory is that I didn’t panic that that kept happening, or apologize to my client for them (which I usually do because I’m super self-aware and a bit embarrassed when that happens).  I will say that I did feel completely capable of tracking all that happened, making notes in my head about what I needed to remember for our future work together, and assessing instantly ways to modify our work based on what was coming up in each moment.  If I was “really sick, “ I couldn’t do that.  So, in my always-tracking way, my bad brain day assessment was that it wasn’t terrible.

I had a 90-minute break between sessions where I ate lunch and did admin things.  I noticed right before my next client that I felt more “turned down” than I had in the morning.  My social engagement energy was low—I was going to have to work to generate some for the session.  I decided at that moment that the rest of today would have to be a rest day—no workout (again notice that in the past, I would have “made myself” do it—or shamed myself for “skipping it”), no delivery gig that night.  I did manage to muster the energy and presence needed for my client—and we had a great session.  I was able to think in the moment, proposing exercises based on what my client brought up, to track their experience, retain the info that emerged for my notes and our future work.  BUT I was aware the whole time that I was slightly under water.  There was one moment in particular where I noticed in my own experience, “Oh wow.  They even look different (from down here)."  I didn’t exactly have tunnel vision, but that’s the best analogy.  My vision was different.  That’s my brain.  It’s not quite working.  It’s not my fault.  It’s not in my head.  And I can’t control it.  I just didn’t feel well.

I think the vision recognition moment officially sealed the deal for me.  I went home, flipped through a magazine on the couch, then crawled in bed and watched TV for the rest of the night.  I did make myself food, and I noticed that it was still easy to wash the dishes.  These are the things I track to assess how “bad” a “bad brain day” is.  When washing the dishes is “easy,” that’s a good sign.  Again, I noticed the physical sensation associated with bad brain days.  The not-headache, not buzzing, something thing.  I noticed being disappointed that I was feeling sick.  It was kind of bad timing seeing as how a) it was the 2 year anniversary of the-break-up-that-led-to-the-grief-that-overwhelmed-me-and-landed-me-in-this-mess and b) just a few days ago my therapist and I were talking about how (maybe) we could say I’ve officially survived, that the grief and the heartbreak are officially over (primarily because I was feeling in remission and grounded and like all that was left to do was to clean up the collateral damage of the heartbreak/nervous breakdown (financial, professional)).  It would have been nice to have been feeling good that night, to maybe have celebrated in some way.  It’s a bit of a bummer to be reminded instead that I’m still in recovery.  That part isn’t quite over.

And maybe I needed to be reminded that I’m still in recovery.  That this isn’t a cure, but a treatment.  I might always be in recovery—I mean the heartbreak took me (and my poor nervous system) to a place we’d never gotten to before, but I’ve lived with depression my whole adult life.  Maybe what I need to learn is to separate my recovery from my ex, from what happened.

As I type that I feel that yes, that’s true.  Aaaaannnndddd…it still would have been nice to have been feeling good that night.  But I can think about this and write about this and I’m not crying.  I’m not upset.  I’m just observing.  And that’s a huge victory and sign of healing/recovery.  So I’m still celebrating.

It’s Sunday as I write this so I have two more days to get through until my treatment.  Drinking my coffee in the sun this morning, I noticed it was hard to keep my eyes open.  Wonderful to just sit in the sun with them closed, but aware that there’s a certain fatigue in my body, an “I don’t quite want to wake up” fatigue that’s indicative of a bad brain day.  I’m hoping today will be more like Friday than Thursday or yesterday.  We’ll see.  What I’m “saying” in writing all of this is that I don’t have control over that any more than a person with asthma has control over an asthma attack.  That’s probably a great analogy cuz sure, there are things a person can do to reduce the risk of an asthma attack.  But it might still happen.  I might have a bad brain day.  I might be ok.  We’ll see…

I feel like my experiences this weekend validated for me that the Ketamine treatment is absolutely working (I already knew that), but also reminded me that it’s a treatment, not a cure.  That I’m still actively in recovery and that it’s not quite “all figured out” yet.  I’m a pinch anxious that not being exactly on top of the dosage, that having a few days where my brain is not doing well, will negatively impact the course of treatment.  I don’t want to need more treatments to make up for letting my brain go unsupported for these 4-5 days.  And, as I learn again and again in this illness/recovery journey, if that’s what happens, I’ll surrender.