I’ve been in recovery for almost 58 months, also known as almost 5 years and along the way I have learned quite a bit about my own body and other people as well.
- Nobody will understand why the recovery wins are so amazing.
- You will likely be resented for focusing on yourself
- You aren’t ever less exhausted
- Each day is as much of a struggle as the last
To someone who has had to modify everything they do for years when you start to do even minor things the way you used to it is amazing. Fully able bodied people will not understand why you are ecstatic just doing a basic every day task. I had to train a couple people in my life how to respond when I excitedly share recovery progress with. All it takes is mirrored enthusiasm. Every time a part of my body moves or looks more like it used to before paralysis are the highlights of my week no matter how small the difference.
I cannot count the acquaintances and friendships that faded because I did not have the time or the energy to see them as much as they would have liked through my recovery. I’m a social being I can and will make new friends when I want to haha. I know I fell off the face of the earth and one day when I’ve healed and am ready I’ll get out there again. I used to be out at every event, I spent at least 3 nights a week out doing something or supporting a cause. My quaint little recovery life was shellshocking to me too.
No matter what you do as your body heals the exhaustion is real. Surprisingly a day of rest is just as tiring as doing hours of exercises. This is a recovery point that is just downright cruel. Thanks to rest days and exercise days being equally as tiring I’ve learned to just push through the chronic pain and take way more exercise days than one should. Eventually you end up living in chronic pain for so long that there are levels of pain that your brain doesnt even recognize leaving pain spikes so detrimental.
You would think that as your body heals you would be less frustrated with your body day by day. Haha nope, as the tasks you cannot achieve perfectly become hinged on the most minuscule need for improvement it gets more and more frustrating. My roommate has finally learned that when I’m bitchy it’s mostly just at my body for still not being where I would like it to be physically. I miss training in sport a few times a week. I turned into a recovering hermit just so that one day I can be the athletic social butterfly I once was again.
The topic of surviving emotional and physical pain was a suggestion from one of you lovely followers.
Making it through the turmoil of simultaneous physical and emotional pain can be a tricky game. The rules of the game change depending on which one is worse from day-to-day, but unlike fight club the first rule is not that you cannot speak of it. Despite my chronic pain I generally resort to making as many muscles ache as I can when I just cannot deal with the emotional pain at hand. Yes that results in an eventual burn out after you’ve run through the chemicals that working out releases in one’s brain, but that’s inevitable.
People often forget how physical recovery can be extremely emotionally strenuous all on its own. No matter whether they are positive or negative emotions it can be a little more than overwhelming paired with the hours of day of rehabilitation one has to do. I have recently talked of the negative so I’d rather focus on how emotional the positive days can be. All it takes to shed happy tears for the rest of the day is a minuscule improvement in strength or range of motion in a toe or finger. To any average person it sounds like nothing, but as someone who has the flashback of being told they would never get anywhere near where they have in recovery it results in being overjoyed.
From the day that I went from having no hope to knowing that even if it took my whole life I would heal, time got faster. In that moment I began to grieve and process my entire recovery journey. Honoring every toe wiggle and finger twitch has aided immensely in loving my body enough to train it and feed as it needs every day. There are people who think I fell off the face of the earth because sometimes I shut down, but really I’ve just been quietly feeling and accepting every emotion I’ve had towards my paralysis. Even my closest friends barely hear from me right now as my only priorities are health and happiness.
Rest, Down time, Chillaxing, whatever you would like to call it. Everyone required to recover from any illness or medical diagnosis needs it. Despite being what most doctors have referred to as “medically interesting” since I was three years old (almost 2 decades ago) I have still not mastered downtime. I like to treat my paralysis recovery like a new sport i can train in. Yes, this may not be the brightest of ideas ex: the vomiting mentioned in my last post. If burnout was a place I would be the mayor or ruler. If I was paid based on the intensity of my recovery burnout I would have enough money to never worry about anything ever again. I am so incredibly horrible at downtime that my friends have begun to intervene.
After I started to bounce back from my day of sickness mentioned in my last post the girls got me out of my house for twenty-six hours of relaxing girl time and some good food. It is so easy to be constantly burnt out because I train my body like paralysis recovery is the new hot sport. If you aren’t sweating, bleeding, or in tears you are not trying hard enough. probably not my most brilliant tactic, but it is how i got this far in my recovery so why stop now. I will admit that taking two days off of my normal routine and just chilling was extremely difficult, but I felt so much better afterwards. Please be kind to your body and be less of a try-hard than I.I have lost track of the amount of recovery injuries I have had because I work my body to the point of complete exhaustion.
Transitioning and recovery have been a beautiful combination though. Since getting my hormone levels right, or as close to right as they have ever been I no longer lay in bed for hours just too depressed to function. I have gone back to being that happy annoying person that wakes up without an alarm with a smile on their face at five in the morning. This also means that I have been able to push my recovery harder than every because I am not distracted by disturbingly dark thoughts all day. when your mental health improves it makes it so much easier to improve your physical health and working on either one benefits the other, which is pretty handy. The combination of my mental and physical health lately have left me using almost solely artistic endeavors to retrain the left side of my body and make up for lost time.
I am going to end this bluntly: Don’t be a dick listen to your body and your limits so that you can heal.
Everyone will tell you that recovery eventually gets easier. I am well past my half way mark and I have to say I cannot agree. There’s nothing worse than being so close to being able to do all the things you desire and yet all of them are out of reach still. So I guess all of recovery is difficult for different reasons. At the beginning it was finding the drive to keep going every day, in the middle it was the struggle of lost time because every day looked almost exactly the same and closer to the end it’s trying to not best yourself up for being so close, but so far away.
At the beginning one just goes on because they are told to, despite everyone and I mean everyone saying you’ll never get better especially after every treatment to try to correct it fails. You eventually begin to lose hope and direction and you resort to living each day just to get through the day in front of you. One day none of the tips or tricks you were given to help you work at all and when you find ways to curb it is where the next stage begins. The beginning was the worst for me because it also paired with the severe post op depression that comes with neurosurgery. I had to convince my brain every day that there was something to fight for even though most of the time I did not believe it myself.
The middle of my recovery was a strange stage where I became obsessed with finding the best ways to better my physical health. Every free waking moment spent running every possibility through ones mind of the exercises, stretches and activities one can try to get better. This was a stage where most things only worked in bouts, there was a fair bit of crossed pathways so it was a stage summed up by “One step forward and two steps back”. This felt like a plateau without further analysis, but really my body was trying to sort out its own problems, which on the outside appeared with what looked like severe muscle confusion. Then comes the final stage and final stage take: 2
In the second to last stage you are conquering recovery, have figured out how to thrive through both your good and bad days and are just itching to get back to a normal life without putting your health on hold again. This is where I am at, I can see the stars, yet I still cannot smell the roses. Every time you think you’re almost at the finish line it turns out it was a mirage and you’re going to have to fight like hell to not give up every day. I know that every other day I get a little closer, but still just wish I could pick up and start over where nobody knows my name. I’ve mastered my habits so on these days I try to just rest and maybe take a nap if I’m super trained.
I hope to get to the final, final stage within the next couple of years or so, so that I’ll be the fun life living person I used to be once again. Even if the rest of my life involves a couple of hours of physical therapy a day that would be a lot more manageable than eight to ten-hour days.
What have the stages of your recovery been, feel free to share them with me.
People often ask why I have so many creative outlets, and instead of just saying for my health as I normally do I thought I would elaborate on it a little further. Whether it’s sketching, writing, painting, or practicing an instrument all of my creative outlets come with more than one benefit. They both help to better my mental and physical health and why would I argue with things that all around help me feel a bit better?
The human brain responds differently to each different type of therapy (physical, occupational, music, art, etc.) So other than my recent focus on physical therapy and music therapy I do my best to keep it well rounded so that all areas of my brain and my injury are getting the attention that they need. As of late my body has clearly been responding better to music therapy so that’s how I exhaust myself on days when I can focus on my physical health.
Even before my paralysis, art has always been my outlet. From visual and fine art to performance arts they have consistently been my go to. Even bored in classes I used to just sit and doodle through lectures because my teachers and instructors never said anything that was not already in the textbook haha. The sooner one finds healthy ways to cope with what life throws at us, the sooner we can thrive. Then there were my teens that were very dark so I always just drew what I was feeling. I actually went through all my old sketches from that time period last week and realized i was in a lot more pain than i acknowledged at the time. From faking happy to being genuinely happy in an 7 year timeframe, it’s an astronomical difference.
In the comments share with me what your devices are.
January 21st, 2014 the day of my paralysis was also the day I disappeared. Now years later I am still unable to participate in social groups or clubs regularly and nobody understands why. No it’s not that I hate being social, nor do I dislike everyone, but my social circles have definitely changed for those few times I’m up for more than just my recovery. Nineteen times out of twenty you will only catch me out at an event if I have not done anything towards my recovery.
Essentially I fell off the face of the earth. Before paralysis I was a social butterfly, out at every gathering where everybody knew my name and half of them knew my story. When people from that old life see me now it has been years since our last encounter and it usually starts awkwardly with, “what do you go by, you’re clearly transitioning”? Illness leads to isolation it could even be considered self-inflicted, but if I’m invited to something that I wont be able to fully fuel to visual or physical deficits there is a slim chance I will attend. I do this to prevent the cycle of frustration towards my body because recovery is hard enough on its own.
My social circles evolved to solely include people had gone through or are currently going through similar or relatable situations. I no longer see value in being around people who had no depth or struggle and were only concerned about tabloids and a facade. Part of living my authentic truth through this recovery is helping others to do the same. Chronic illness and trauma bonding are very real and have led to all the most beautiful and healthiest friendships in my life.
It is a huge struggle for me to only be able to be social once a week if I have had a great week with minimal pain, restful sleep, and no set backs. It would be a dream come true to br able to go out whenever I felt like it and I may not ever but one can hope right?
What do you struggle with that nobody seems to understand?