I realized this morning laying in bed that I have only been home SEVEN of the 31 days that make up the month of October!
Pretty wild for someone who is almost ALWAYS at home laying on the couch or in bed and especially wild for someone who sometimes doesn’t leave her house for 2 weeks at a time. I especially cant believe October is almost gone when I feel like I was JUST getting ready to leave September 30th for my Colorado trip!
To be honest, I am leaving this month pretty drained.
Its been the busiest along with wild and wooliest month I have experienced in a long long time. A month of incredible highs and scary low low lows. I am writing this October 23 and having trouble comprehending that so much has happened in such little time.
In the past 23 days I have been able to push beyond trepidation and take flying leaps of faith. Those leaps have allowed me to be reintroduced to experiences that haven’t been part of my reality for several years. Sometimes its an incredible (new) old experience and I can get really close to remembering what it’s like to be “normal” and not in pain. Sometimes I miscalculate and leap a little too far out. In these moments where the pain and/or nausea roars out like a gunshot in the night, I dig deep to soften my landing.
Yet within the same time frame as these awful flares and jagged trajectories, I am also able to somehow also find blissful sweet relief and hope becomes a parachute I can grab on to as I swing way out into the sky.
Up and down and down and up. Falling and flying.
Pretty much all of October has been Genevieve oscillating between extreme highs and lows and only now am I catching my breath.
I haven’t gone on a trip since June 2014 and haven’t gone on any kind of relaxing vacation since July 2013. This was also my first time flying in my wheelchair which led to a cocktail of stressing out, 1 part apprehension and 2 parts rumination. My only experiences traveling in the wheelchair were my many trips to New York City last year. Those trips were always depressing, stressful, and exhausting partially due to my disability so I have worried that ANY and all traveling in a wheelchair could be unavoidably awful.
It was scary, exciting, stressful, and exhausting to try but I desperately wanted to just do something normal people do.
The sad truth is that I am really too sick to be traveling like that but it was a truth I would only understand if I actually tried it.
I decided to go out to Colorado with Amber just desperately wanting some relaxation, some slightly different scenery, and if I am being totally honest, to also try a specific treatment.
During our trip there (which consists of two flights-one about an hour and one that is about 4.5 hours) I made a n00b aka BAD decision and popped a new headache medicine RIGHT before we boarded the first plane. Looking back I wonder to myself why I thought trying a new medicine while trapped on a plane sounded smart…but I sure learned my lesson and will NEVER do that to myself ever…ever again. I ended up having a bad reaction almost immediately and was throwing up into an airline puke bag before the plane even took off.
The emotional high of going somewhere new with my BFF carried me through the first 24 uncomfortable hours there and then it all came crashing down when my body decided to throw me some curveballs with my pain and my nausea. I made a big mistake of hinging my hopes on this treatment somehow giving me A LOT of normalcy and naively believed that if it somehow worked that surely I would be able to go do a BUNCH OF STUFF while we were there.
All the plans I had to go be “normal” came crashing down around me very quickly when the treatment made my pain EVEN WORSE, a possibility I had never even considered.
I wanted so badly to go explore with Amber and eat lots of new food and just be outside in this unbelievably beautiful scenery but I spent much of my time on the couch or in bed…much like I do at home.
Looking back it seems like on some level I am still trying to escape my body every so often.
You’d think I would know this doesn’t work after this many years but I never learn. No matter how much I try to accept my body as it is now, I think I am always slightly pulled to try and escape it or change it. Much like my pain I just don’t know how to turn off that yearning to be different.
The treatment I wanted to try of course…didn’t work (big surprise) and no matter how many times I feel that heartbreak, that bitter disappointment never fails to me to my knees. Amber was so kind the entire trip and let my body dictate a lot of what we did. After some crying Sunday when my body completely flipped out I was able to dust myself off, go to a cool vegan place for dinner that night (and eat which is so hit or miss with my stomach) and was also lucky enough to get to spend some much needed quality time with my cousin and his girlfriend Monday night.
I spent the rest of our time in Colorado resting, trying to calm my pain down, trying to decrease my nausea, and contemplating why I let myself always get so heartbroken over failed ideas.
The cost of acceptance vs. the cost of always trying to find a way out of this body and back into the one I had before.
We came home October 6th and I must say that the trip back home was one of the physically taxing days I have ever experienced, a long day that began at 3am and didn’t “end” until 6:30 pm.
I had gotten SUPER dizzy and nauseous the day before we left for home and for whatever reason could not get my body “reset” so unfortunately I dry heaved and threw up the whole day we flew home. My body was stuck in an endless cycle of pain nausea pain nausea pain pain nausea. My wheelchair was of course flagged for explosives (wtf), I almost had a panic attack over our plane possibly crashing, we almost missed our 2nd flight because Amber had to run and buy me nausea meds, the bad luck just went on and on and on. I was half expecting to find Amber’s car stolen or get in a car accident by the end of the day just because it would go perfectly with all the other disasters of the day.
By the time Amber finally dropped me off Thursday evening, I worried I might have to go to the ER because I was SO dehydrated and my nausea just couldn’t stop. Thankfully that didn’t happen.
So then I had 3 lovely days of being home trying to calm my body down and reveling in the comfort of being back with Sean and the dogs.
Once I was home and had an hour or so to rest and calm my body, I was able to go from unhappy chronic pain traveler to once again finding deep gratitude for being able to even AFFORD to travel and gratitude for the ability to EVEN be able to experience the disappointment of a failed treatment…because that means that a) there’s treatments to try (not everyone’s reality) and b) there’s hope of my condition being relieved and/or changed for the better (again NOT everyone’s reality).
After having some days to rest and reassess, I decided that I will NOT be traveling again:
1) until my nausea is finally being consistently managed (which is truly a blog post all it’s own). My chronic nausea is just about as constricting, tiring, and relentless as my chronic pain but it gets a lot less attention and is still running wild 4 years since it first started with no underlying reason AND no concrete treatment. This month is the worst its been since December 2014.
2) until I am out of the wheelchair. While Delta was great on the way there, they weren’t as great on the way home and poor Amber was spent from trying to deal with pushing me, carting around all our bags, and navigating all the complexities that occur with a disability device. I had no idea how much people touch you when you are being transferred from your wheelchair to a “plane friendly” wheelchair and then back into your chair and so on. It was WAY WAY WAY too much jostling for my bratty nervous system.
Then it was time for ketamine.
Oh and then the clouds parted, the sun and stars shone brighter than ever before and the world stood still while simultaneously turning….the ketamine infusion was 6 days of incredible bliss.
Those 6 days were a love letter to me from the universe. 6 days that were a reassurance that “Yes Genevieve you have a purpose here and all this pain is not for nothing. You shouldn’t give up yet”. 6 days that soothed the deep ache that the last 5 years has left inside me.
I came home from those 6 days quite certain that change was around the corner, ready to once agin dig deep and try to get back on my feet literally and figuratively. I was getting a break FINALLY.
28 hours home…and then back back back to the hospital with a frightening new pain in my stomach while my legs and feet began their familiar deep burning and aching, such an incredibly vast contrast from the pain free existence of just a few days prior.
It’s truly amazing how so much can change, even within just a few short days.
3.5 more days in the hospital.
I will be raw and honest by saying that at times I do try to come off a certain way online. I try my best to not complain too much, to have cute little jokes and quips about being disabled and sick, to seem overall “OK” with where my life has gone. I try to toe the line of being open and honest about this experience while still trying to discuss all the other cool stuff in the world that is FAR more exciting than talking about being sick.
The truth is that I can own that some days I am trying to “prove” that I am strong and good and ok and brave and filled with gratitude 24/7 despite what has happened. I don’t know who exactly I am trying to prove this too. You? Myself? This doesn’t negate the validity of anything I say about gratitude, it’s all real and honest and true. Just some days I have to push myself to see it, to dig deep until I find some minuscule silver lining hidden away, almost invisible to the naked eye.
The even more truer truth is that I was the exact opposite of all of those things I try to be when I went into the hospital again this week.
In those 3.5 days I let it all get to me.
I cried big fat ugly tears more than once including some very public crying spurts which I usually don’t let happen. I let the fear completely overtake me a few times. I let the pain run me into the ground. I let the nausea completely win and quickly stopped eating or caring about food.
Despite JUST having experienced what normalcy and relief feels like, I once again was convinced that I was a hopeless lost cause.
For those 3.5 days I was found myself swerving towards being unappreciative and fear focused time and time again. Add in feeling unheard and frustrated. Add in feeling exhausted from barely sleeping during ketamine and feeling perpetually sour no matter what was going on.
I lashed out towards the end and threw as close to a mini-tantrum as I have been in quite some time. I was completely infuriated by the denial of headache medicine Thursday night/early Friday morning and then even more infuriated by the incredibly confusing denial AGAIN of my regular sleeping meds. I was too sleep deprived to articulate it calmly and the migraine I was in the midst of (which would have been avoided had I been given proper medications) completely set me off the deep end.
Once I was done radiating hate and done vomiting bile and done feeling my blood pulsate in my brain in slow agonizing waves…
then and only then did I slowly soften.
I said I was sorry for being angry and hateful, for shouting angrily with my face buried under a hospital blanket. Sorry for accusing my loved ones of not knowing what it’s like to suffer. Sorry for insinuating that they had it easy and I had it so hard.
I was angry for a perfectly good reason but then went off the deep end with my anger and fear.
Now I am home. Again.
I have been home for 2 whole days.
I have 8 days of October left.
So how do I best utilize these 8 whole days? My “plan” is to mostly rest and try to see if I can to gently remind my body of those blissful 6 days that ketamine gave me. How does one hint to a nervous system that it would be lovely if we could revert to that kind of pain-free existence all day every day? I also have 8 days to think about the mistakes I made this month, the thinking patterns that still need a tune up, and how to begin (again) to work towards accepting that chronic pain and disability may always be a part of my reality.
I think that given the severity of my nausea this month (along with these new stomach issues), I needed an extra push to gear up to DEMAND that someone figure out what the hell is wrong with my stomach and have some actual treatment options instead of handed some medical thc pills and not given an actual diagnosis.
Anger can be a powerful motivator.
I am also leaving October with the understanding that it’s good I still want to take risks and it’s ok that I am always game to try a new treatment, that sometimes these risks bring amazing rewards and sometimes these risks makes everything worse.
Even with all the disappointments, the flares, and the long days of feeling awful, I walked and jumped and danced and practice yoga for a few short days this month and it was worth every tear I have ever shed over being sick. 5 years ago CRPS began to spread it’s roots into my life and for the first time since then, I was able to remember what it was like before that seed was planted.
There’s such duality in our human existences and I have never been more acutely aware of it than these past 23 days.