I’ve been doing this for what feels like a long time now and no matter how much I overdo it or if I have a balance between my recovery and my leisure I hit a wall and sleep for a day or two every 3 to 6 months. This past weekend I hit that wall and despite getting my normal amount of sleep, as soon as I completed my daily routine I curled up and fell asleep for the rest of the day. Normally I wake up a bit angry for wasting a day, but this time I felt at least partially rejuvenated and it was glorious. Continue reading “The Perpetual Burnout in Recovery”
In a few days I get the wonderful opportunity to celebrate the date of my paralysis and the increase over all these years of my chronic pain. Well that was an extremely dark intro and while yes I may be celebrating those things there is no one thing that has led to more personal growth, internal struggle, and pure happiness from within. On that note I’m going to talk about all the things I’m grateful for thanks to my recovery as I sit here writing this today.
The last 5 years I have been my own personal science experiment day in and day out. Whether it included applied past knowledge or I was just learning along the way once again I became the expert of my diagnoses learning what was best and worst for my recovery. With that knowledge I know I can tackle any task at hand no matter the time or effort it takes.
Having to be in a very committed relationship with my recovery despite all the struggles and even the times where I pushed my body past limits to where it got unhealthy. Every day despite wanting to fold and walk away I decided to fight it and prove everyone including myself wrong. It was the traumatic situations that I ended up in as a queer person with a physical disability that taught me to fight even while having flashbacks for days on end so intense I barely slept every night for a year afterwards. Knowing how far I had come and with the support of a few phenomenal friends I made it through.
3. Indomitable Spirit
Despite the hundreds of bad days I’ve had in this period I still got up every day and trudged on with a smile on my face. It was only this year that smile stopped being a mask of my physical and emotional pain, but hey we all have to fake it until we make it sometimes. This year I also started having flashbacks to the moment that my paralysis set in and I had to find the hope to recover instead of getting trapped in the fear of what was to come and the waterfall of tears pouring down my face.
4. A Modified Prospective
Trading one illness for another and adding a loss of some of my visual field in both eyes. Literally I see everything a little bit differently now. This is amazing I used to hate life so much and even with less joy than struggle in recovery the light has been so much more valuable post paralysis. It was the beginning of a streak of traumatic events that taught me to find the positive aspect in every situation. Now I am always looking for the lesson in the bad and appreciating the good.
5. My Authentic Self
My paralysis taught me that no matter how hard anything is I can make it out on my own so after my body was what I considered healed enough to begin my medical transition I did. With the loss of muscle mass the muscle tension in the left side of my body was conveniently reduced and it became easier to heal once again. As most trans people would tell you starting that process was the beginning to an end and removing that weight of not being yourself makes every day a lot easier. Yes I had to disown most of my family once I took those steps, but the self-love that took their place in my life more than made up for it.
I guess the really cliche thing to say would be I love my imperfect life.
Most people do not come equipped with the singular focus or dive to Male their recovery from anything their top priority. One of the best things for my physical recovery was the singular focus that comes with being atypical. Since the day I decided I would beat this it has been my top priority and a bit of an obsession. I was one of the lucky few who knew at the time of my paralysis because I was a martial artist and a pole fitness practitioner. Even almost five years later my recovery is my top priority and nothing will get in my way until I am 100% recovered no matter how long it takes me.
Making ones health a top priority is isolating, can be lonely, and at times will make you feel like you are going to lose your mind. Even within friendships the time spent together had to be mutually beneficial otherwise it was another thing that added to the long list of things I felt obligated it do and eventually died off. Anyone who consistently took time away from my week got cut off. For example I had an “acquaintance” that thought they we fiving me something to do when they would pick me up just so they had a buddy while running their errands all day once a week. I’m sorry but if I want to accomplish nothing and just be there to fill a space I would rather it was my space on the couch doing something to heal my body like occupational therapy exercises.
I’ve never met anyone else that sits down with a pot of coffee every day and assesses what tweaks can be made in every aspect of their physical rehabilitation to improve the balance to get where they need sooner. Martial arts may have never been my thing despite the nine years I trained, but it did teach me that every day you can make something better if you are willing to put in the time and effort required.
My paralysis set me back in every aspect of my life but no matter the loss of potential earnings or being several years behind where I want to be. Friendships lost, opportunities not taken, I still see my paralysis as one of the best things that has ever happened to me because it taught me that I can make it on my own no matter the odds. When I heal and am ready to pursue all the things I want accomplished it’ll be a hell of a lot easier because I know how to not give up.
I have learned a lot even since I published my book, what do you guys want to know more about?
From a book signing to my transition to finally beginning to tackle the plateau in my recovery that hit me at the end of last year and a six month pain spike where I accomplished nothing. This year has been anything but ordinary. This year was one of those make it or break it years that has prepared me fully for whatever comes next and for all I am hoping to accomplish over the next 12 months.
I’m an author that learned that I truly hate running my own reading and signings and if I ever finish my next manuscript I will pay someone to do the talking and just sit there and sign books. I read that book so many times in editing that no I don’t want to walk the length of a room and read it to you aloud haha.
My transition has been an emotional rollercoaster, no joke I cry every damn day and I’ve learned to accept that happy me is an outwardly emotional person and that has taken quite the adjustment. Almost 13 months into my medical transition now I have almost found my ideal balance between Male and female to match my nonbinary identity too. I know that the changes will continue for years to come but I could be finished my medical transition at some point this year with any luck.
In regards of my recovery I was lucky enough to start healing again and further regain some mobility. I hope that within a couple more years I will reach that full recovery and have equal strength and ranges of movement in both halfs of my body. More than anything else my paralysis taught me the patience I needed to slowly work towards a goal without seeing much progress and not lose my mind. In less words it fully readied me to transition even though the timelines now overlap.
The last 3 months since I got my worst recent pain spike controlled have been so good to me. From closer friendships to bigger goals and realistic timelines I got pretty lucky this year even counting the six months I was the living dead on a couch. I hope that all of you are equally as excited about what this year may bring.
I would like to start off by saying I’m sorry that I have been AWOL for a while and I miss interacting with you guys. Up until the holidays i have been trying to mentally prepare to see my family this holiday season and it did not work. I only know a couple of people who normally do not struggle with the holiday’s and these people were on the same ship sailing to the same unknown destination.
As rough as these last weeks may have been I can say that some awesome things happened too. For example I got the chill with a bunch of friends instead of seeing my disowned family on the twenty-fifth. Thanks to struggling with my upcoming trauma dates I have been tackling my mind with obsessive amounts if exercise and have made some progress with my micro movements. Seeing the good in the bad has been one of those beautiful skills I had to learn since hemiplegia
Spending the holidays with a bunch of queer friends where nobody’s gender identity was an issue or hot topic was nice. It may have even been the first time I ever got those warm fuzzy holiday feelings that I have heard people rave about my entire life: Pizza, board games, friends, laughter. The kind of event that makes me not want to spend another holiday with someone that shares a gene pool or bloodline with me ever again.
I need to slow down again I have been pushing myself too far for too long and it is probably why my pain is high resulting in varying levels of sickness. I might even make it a goal for next year: be less sick haha. I hope you’re all doing well and are having love filled holidays.
I cannot believe that I started this beautiful and fulfilling medical journey to becoming who I had always been on the inside a year ago. So far my medical transition has been relatively seamless and fairly “straight-forward”. Other than some dosage adjustments here and there and the torment of dysphoria I experience as a non-binary person. The social transition (name, pronouns etc.) Has been a lot tougher. It has been an amazing year where recently I even started to see my inner me and not the toned fit boy I hid as for the longest time. In no way is being trans or transitioning easy, but just as I said in my speech, it is worth it no matter the struggle. For the first time in my life I’ve been at peace with my body and I’m still recovering from paralysis too.
At the beginning I truly believed I identified as female, but it did not take long for me to realize i was much more in the non-binary section of the gender spectrum and this was different because personally I experience bits and pieces of both trans feminine and trans masculine dysphoria. My dysphoria is the lowest when I present as androgynous as I can. I have always loved being kind of androgynous so it’s no real surprise that is where i am most comfortable, but with my now very feminine figure it can be harder to present androgynous without wearing a bunch of men’s clothes. Even at the beginning I had started doing facial hair electrolysis but I quickly realized it made me more dysphoric to not have the shadow or stubble so I stopped the hair removal and am enjoying letting it fill back in.
The social transition was the hardest especially because as soon as everyone that was going to roll with it started using she/her I changed my pronouns to they/them and gender neutral pronouns can be fairly hard for people to grasp. She Is still more acceptable than he, but there are very femme people who I let use more feminine pronouns or nicknames to identify me. It’s hard loving the chest I developed over the last year and yet sometimes wanting to tape it away and look as masculine as possible for both my own comfort and safety. I don’t keep anyone in my life that doesn’t respect my name or pronouns, which in turn forced a lot of people out of my life. I may not have a perfect body, but for once it feels like I am living in my skin and no longer a costume or mascot that I fully disassociate with
Above 11 months on HRT
Above: 2 years before HRT
I sit here a little overwhelmed at everything that is going on right now, but realistically I am coping pretty well. Both physical and emotional pain have been high for a couple weeks, and I’m doing what I can to deal and push through it. With my pain levels as high as they have been my progress has slowed, and I’m trying to accept this as just a step in the process.
Let’s start with the emotional pain: this week my brain acknowledged that a handful of trauma anniversaries are coming up all within the next two months and I’ve been using every coping mechanism I have. I’m lucky enough to know myself and exactly what I need in these times because, December and January have been tough ones for me for years now. My most used tools this week were: square breathing, meditation, physical activity, and getting musically creative. If you are struggling this season do not forget to reach out to someone you trust and talk about it.
Between a spike in my chronic migraines and recovery pains I have gone back to having more rest days than productive ones and being the perfectionist I am is quite frustrating. So much of this time is spent pent up on the couch staying as still as possible so I don’t make the nausea worse. Probably why I used to play three instruments that took little to no torso movement before paralysis haha. As the body heals and muscles grow so does the pain. It feels like every other day the pain is a new game. I have to wake up and take each day as it comes, no plan, only a general direction and the internal drive to continue to heal.
I am hoping that next week is at least physically easier so I can get some of my personal goals back on track. Whatever happens happens and will continued to be honoured as just part of the journey. How are all of you doing this week?
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.