Lesson Learned In Traveling With Chronic Pain

Traveling with chronic pain was the greatest challenge I've faced this year.  It was a constant reminder every second that I was indeed a different person.  I had to manipulate my days to fit into the little energy I had, more than what I already do at home.  I had to feel the guilt pouring into my heart because I turned down activities only to feel the frustration from others around me.  I felt the lowest, because I didn't feel like myself, and I don't know if I ever will again.

It all started when I found out I was taking a trip up north with my boyfriend for a friend's wedding outside of Boulder Junction, Wisconsin.  He planned to go early and make the trip extra special with fishing and swimming.  Early on, I was wary considering my health and energy was sliding downhill in the weeks leading up to it.  The reason?  I had just started Gabapentin and Dry Needling. The emotional side effects alone from Gabapentin were enough to cause suicidal thoughts that lingered while I was awake as well as off into dream land.  I would daze off, picturing my hands around my own fragile neck under water, legs kicking, bubbles fluttering up to the surface.  I would easily snap myself out of it, but the thoughts always crept in the shadows.  Consciously I knew it was the medication; normally I would and could NEVER have a thought such as this.  Medication usually plays a huge role in my mental state and emotions.  Knowing that while trying new medicines always reassures me I'm not losing my mind (for now).

While combating the awful side effects of Gabapentin, I was dealing with countless flare ups from dry needling.  I am not complaining, considering that't the point of the procedure: to piss the muscles off enough and make them repair themselves.  However, I happened to develop the worst nerve pain of my life in my neck, collarbone, ear, face and head leading up to the trip.

This is what I was supposed to be doing the day prior to leaving:
Go to doctor appointment, run into work to fill out order, laundry, dishes, pack, clean litter boxes, fold blankets, sweep kitchen, change cat's water and blanket, pay medical bill, fix window screen, set up box fan in window.

This is what ended up happening:
Wake up with screaming headache, take Excedrin with breakfast.  No one to drive 30 minutes to doctor so I take myself.  Doctor appointment at the pain management clinic.  Tell her I'm in pain so politely say make it quick and speak softly.  Goes against wishes.  Drive home and stop twice from eye balls ready to burst.  Call boyfriend in tears.  Make it home 50 minutes later. Strip clothes off.  Ice on the face, Tramadol.  Ice on the neck, peppermint oil on temples, pain cream on collarbone, Tizanidine.  Heat on neck with tiger balm, re-arrange pillows, curl into ball.  Crawl to bathroom from pain ready to puke.  Lay on tiny bathmat holding legs and massaging temples while trying not to cry.  Crawl back to bed.  Question why I am doing all of this and if it's worth it.  Tizanidine. Figuring out who will miss me the most, my cats or my parents.  Snapping out of it and telling myself I'm strong.  Laughing at the pain.  Find comfortable spot.  Pain relief for 7 minutes.  Start packing.  Lightning and thunder return and so do the tears.  Tramadol. Considering going to the ER. Repeat.

Defeated, I was incredibly concerned that this is how the entire trip was going to be like and expressed my concerns to my boyfriend.  If you're anything like me, or experienced any pain like this, you know the 'oh shit' feeling when you have plans and don't know if you should cancel and want to be good to your body but not let your significant other down but not feel guilty for putting your body through hell but not resenting your significant other for the choice you make.  My brain already hurt like hell and I know he wanted to leave early in the morning; it was a 4 hour drive, we were hauling the boat and he planned to bass fish in the morning.  I couldn't handle making up my mind and through much deliverance I finally said I would give him an answer in the morning if I made it through the night without having to go in.  Although frustrated about plans changing, he understood and went to sleep.  Tossing and turning most of the night, I cried, crossed my fingers, had nightmares and night sweats until I heard the birds chirp while finally passing out.

I woke up to a blaring alarm and immediately started running around.  All the while I was thinking I couldn't believe I was putting myself through this.  I couldn't believe I was stressing myself out to the brink of lunacy.  On the other end of the spectrum I knew it was going to be an amazing trip and how much it meant to my boyfriend.  Still with a pounding nerve-pain headache, I packed, showered, did all the chores and within 2 hours we were on the road.  I packed pillows under both arms and on top of my stomach, wrapped myself in my minion blanket, took a Tizanidine, and barely opened my eyes until we arrived.

Let me give you a brief description of how I was BCP (Before Chronic Pain):  I was adventurous.  I loved road trips and staring out the window the entire trip.  I didn't sleep in the car because I didn't want to miss anything.  Car games were my favorite.  I would be packed and ready to go days before the trip, and not be able to sleep the night before.  I would want to do everything and anything on our agenda and then some.  I was never a crabby person unless someone disrespected me.  It was alright if something didn't go the right way.  I was always described as bubbly, energetic and happy.

Re-reading that paragraph is extremely difficult.  It's hard giving up the old me.  The new me barely makes a 30 minute drive without wanting a nap.  I have to pick and choose what I can do.  If I have a long exhausting day of fun, I'll usually go through with it but be down and out for days to come.  I dread trips because I can't return to my bed at night or my cats or the smell of my diffuser.  I'm accepting the change little by little, but it's going to take awhile.

The guilt I felt on the trip was chest-gripping.  I could barely help with anything.  My boyfriend did this and that for me, and I'd want to cry.  Thinking about it now makes me upset, guilty and grateful all at the same time.  We couldn't go fishing early in the morning like he had hoped because I couldn't get up early enough.  And when he finally did wake me up I was a tornado of bitchiness.  I couldn't control it, it was like word vomit.  In my head I kept thinking, why am I saying this?  He is only trying to help.  He is being so good, quit being such an ass!  And yet another negative comment would come out of my mouth.  Finally when I wasn't so achy and crabby, we would get the boat ready and drive to our destination.  I would be rather quiet, considering I felt like a jerk for what just happened even though he never holds it against me.  Then he asks if something is wrong, I say no, he knows I'm lying, and he thinks he did something else to hurt me.  You see why I hate chronic pain?!

When the pain wore off and my energy level was back up, even for an hour or two, it was like nothing ever happened and we were a totally normal couple again.  I felt normal again.  We would joke and laugh and I could be myself.  I felt total bliss in those moments, like maybe everything will be alright.  Sadly, those moments didn't last long, and I was swallowed whole by fatigue or pain and the mute button would be pressed.  Even then, he always made sure I was comfortable and happy; he made jokes and asked if I needed anything.  He really is a trooper with this whole pain thing, and for that I am thankful.

We went to the wedding  On Saturday and I was instantly exhausted.  I'm sure it had something to do with getting ready and the stress of the 20 minute drive there.  I was silent with my complaint because I was extremely grateful to be a part of our friend's wedding.  I glanced around the aisles of people, wondering if anyone else had an invisible illness.  Wondering if anyone else has been going through hell.  Wondering if I wasn't alone at the wedding.  Sometimes even when I'm with the closest people around me, I feel the most alone, and that's how I felt at that moment.  Just as I wanted to cry, my boyfriend gently placed his hand over mine, gave it a little squeeze and flashed me a little smile.  For the time being, it made me concentrate on my beautiful surroundings rather than feeling surrounded by foreign people.

While we were on the lake, I decided to take the time to thoroughly reflect and enjoy myself.  The water was crystal clear, the waves lightly sweeping the shore.  Eagles and seagulls and loons circled the waters searching for food.  It was a breezy 80 degrees with a few clouds.  The days were perfect.  We fished, searched for sea glass, took pictures of our feathery friends and shared some beers.  Those moments made me forget everything back home.  It made having chronic pain so minuscule.  

Every trip I take is going to be tough.  Every trip is going to be different, both the destination and how I'm feeling.  I think that's why I get so frustrated; I can't plan something because I don't know if I'm going to be in pain then.  I get nervous thinking about the future and how I will be able to handle it.  But I can't beat myself up for it.  I'm going to have to accept that I will eventually have to say no, and let someone down, and feel guilty, and be upset; but that too shall pass, just like everything else.


Equanimity,

Kelsey