What's it REALLY like? - Recovering from a major neurosurgery

Continuing the theme of posting more comprehensive and less curated accounts of my latest neurosurgery, this post will be about what it's really like recovering from said surgery.  I wrote this as of being three weeks post op, and then went back and edited it at just after four weeks in case anyone who is going to have this surgery wants to know the timeline.  

Attitude is everything!  (Or is it?)

First, I want to paint a picture of how I envisioned my recovery.  I got a little competitive about things and decided it was going to be my BEST ONE YET!  I was going to be a little workhorse - exercising my butt off, losing more of that annoying steroid weight, getting back to doing art while still in the hospital, getting off pain meds and extra steroids in record time, and incorporating tons of "best practice" ideas from the ridiculous amount of continuing Ed classes I took on acute/chronic pain and recovering from surgery. (Seriously, I have like double the amount of hours needed this term!)  I was gunna make awesome goals and achieve them in record time.  I'm an OT, after all.  And I've done this so many times before.  I should be GREAT at it!  

Oh, sweet summer child, sometimes the body has other ideas.  

Like being anemic, for example.  Or having no endurance because I've spent so much of the last year laying in bed.  Or having both hands disabled from inflammation in my neck.  Or having tons of emotional issues from med changes.

But that's getting ahead of myself...  

The Warm Fuzzy Part

    First, there was a nice few days at the airBnB condo where I felt things were on track and I was on enough pain meds that everything just kind of seemed chill and happy.  As my doctors suspected, my health improved a lot once I was in control of my own meds and movements again.  I started eating a few well-tolerated foods and drinking more fluids even without nausea meds.  

Can't resist Mom's cooking!

I didn't have to ask anyone's permission to get up and walk, so I did a ton of condo walking tours.  Basically, I'd nap, go on an indoor-walk, eat, nap, go on a mini walk outside, rinse repeat.  Coming from a place where I struggled to make it five steps to the other side of my hospital room and back, this felt great! 

My epic journey to sit by the pool that was like 1/6 blocks away

 I wasn't super functional - I needed lots of help with basic ADL type things and was still too tired for entertainment other than falling asleep to podcasts - but that was ok to me at this point.  I did have a lot of pain, but the meds made me care less about it. This is what I call the warm fuzzy part of recovery.  It's when there's lots of sleeping and meds involved and every little thing feels like a major victory.  It's nice and dreamy and what I console myself with when I'm facing surgery.   Like, yes I have to go through hell, but I have this nice bit during recovery to look forward to.  Usually it lasts a month or two.  Usually I see the end of this warm fuzzy time as the day when I stop taking naps.  This time, that happened day 10 after surgery.  Dear universe, that was way too soon!  I wasn't ready.

Anyway, prior to the warm fuzzy part being over, I did three things of note.  I insisted on going to a craft store while still in Arizona where I'm not sure what I bought, but I remember being excited about it.  It went pretty well.  In an excruciating, but hey at least I'm having fun sort of way.  

Yay!  I got "out!"  Now I'd like a two hour nap, please.

 I also flew home, which was an adventure in pain and lack of endurance.  Luckily I just upped my meds to get through it and have already mostly forgotten the whole ordeal. 

The girls roughly 15 minutes after arriving home.  

 The next day was Easter and my wonderful extended family did all the cooking and came to my (parents') house so I could participate.  (Everyone is either vaccinated or quarantine or both.)  I sat up at the table for brunch and had conversations and everything.  And then, that evening, I took my last nap.  At least it was a REALLY good nap.  

The Long Haul

Which brings me to the next part of recovery, which is the hard part.  This is where I'm in it for the long haul, often get frustrated, and go a bit bonkers from all the medication adjustments.   It's also where I see the most improvement and have the most joy as I get back to "normal" life.  It's complicated.  Like life, but more acutely.  

The day after Easter, I started going down on meds which is supposed to totally not have any withdrawal effects because of how small my doses are and how short of a time I'm on them and how slowly I go down. 

 Nope.  Lies.  All lies.  

Instead, as I described it to my dad, "My brain is marinating in crazy juice and I have no filter.  Good luck."  My parents would not be remiss in investing in a good pair of headphones or earplugs.  Coping mechanisms that are usually great?  All the CBT you've worked on for years?  Tending to be a rather stable and happy person?  Yeah, guuuubye to that!  Instead my brain becomes a constant stream of agitation and I get in thought spirals which are really unkind to myself.  Things like "lazy" and "I'm sorry" and "why can't I just..." come up a lot.  

This was coupled with what I considered to be a much slower recovery than I had planned for myself so far.  The first week home was rough.  I basically couldn't use my hands due to moderate to severe nerve pain. I wasn't improving in my ADLs or IADLs because hands are sort of important for most of those.  I definitely couldn't do art, but I also couldn't even really use my phone or other electronics for longer than a few minutes at a time. 

Bad hands!  You are in time out!

 I basically could listen to podcasts or watch TV.  So that left me having way too much time for my crazy juice marinating brain to ruminate on how my body wasn't cooperating with my very competitive ambitions.  It was tons of fun and I was tons of fun to be around, I'm sure.    

My "first weeks home" aesthetic 

My endurance was atrocious with "walks" sometimes only lasting a few house lengths and me having to spend a couple hours recovering afterwards. 

Yay, I made it six houses.  Now I need to go lay down for a few decades.

  Also, all the layers I'm wearing are because my neck is very sensitive to cold.  Even in ambient room temperature, I'll start getting major muscle cramping.  I basically live on heating pads and bundled up, even when it's warm outside.  I wonder what the neighbors think.  I don't care, but I do wonder.  

Things started coming together for me around week three post surgery (which is pretty typical).  I regained the use of my hands and to some extent, my arms for longer and longer periods of time.  My brain chemicals balanced out from that round of going down on pain meds.  My pain became much more manageable.  My endurance for sitting skyrocketed.  Even though I still "failed" many walks, I was reaching distance goals most days.  

Yay I finally made it down the whole street to the park!

And because my memory is terrible right now, I got to celebrate this "first" twice!

And had a freak energy spike and made it AROUND the park one day!  There was much rejoicing.  (And now frustration because I haven't managed to replicate this achievement since.)

Even though I still have times when I "literally can't even" and need lots of assistance, I have more times when I am reaching ADL, IADL, and exercise program goals.  (I also wanted to write that I am being less competitive about things, but then I reread this paragraph....  On that same note, I lost my fitbit.  I had just deemed myself responsible enough to start counting steps without going crazy about it and my fitbit just disappeared off my wrist later that day.  Like I have no memory of taking it off, let alone where I put it.  It was just there....and then gone. Maybe the universe is trying to tell me that I'm incapable of being only a healthy amount of competitive.)

Update: Week four has been a bit more difficult, but I'm still doing well all things considered.  My angry nerves flared back up as soon as I started trying to do things other than walking or sitting in bed, so I'm back to being pretty limited in what I can do.  And since it's nerve pain, it has the lovely habit of not hurting while I do the thing that angers it, and instead all the pain catches up to me a few hours later.  So it's really hard to gauge what I can and can't do which interferes with function and therapy.  As I feel better, I get more vain too.  I'm none too pleased with the additional steroid weight I've gained, or how the meds make me break out and have the dreaded steroid "moon face."  I'm starting to notice things like when my hair is a mess or my outfits way overproritize comfort over presentation.  I think the less I come in contact with mirrors the better for now.  haha  

 But on the bright side, I'm getting more consistent with walking.  I "fail" less walks and can make it around the block most attempts.  That's a good distance baseline for now.  My endurance is definitely still improving for both sitting and walking and hopefully soon, for (COVID safe) outings.  My balance, which gets kind of off after every fusion because of the new way my body moves, is much better and I'm much better at eating without dropping half my food back on the plate as I get used to my new neck position.  I'm progressing in PT and needing less help throughout the day.  I've gone down on meds a couple more times and navigated the resulting crazy brain a bit better.  I even went on my first outing to visit my grandparents with my brother and his fiance!  Everyone agreed that it was the healthiest they'd seen me in a VERY long time.   

That's kind of where I am now.  Life is still small, but already bigger than it was pre-surgery and continuing to grow.  I vacillate between celebration and frustration as I navigate the bumpy road of recovery.  It's definitely not linear, but the trend is overall a good one.  And if it all goes well, and I put in a lot of work, in five to twelve months from now I'll be in good shape (for me) and, fingers crossed, ready to get back to "real life" whatever that will look like.  I'm hoping for walking two miles a day, going to work part time, and being able to travel again.  But really anything that's not laying in bed most of the day is pretty awesome!

And for fun and as a thank you for getting through this ill-proofread post, here's some pictures of my dog "protecting" me while I rest.  It's her fun new hobby she's picked up since we got back home.