Disclaimer; this is entirely my own theory to which I do not have the resources to prove incorrect or correct. I do not think there’s science to back it, but I’ve always had a theory in reference to my paralysis that it was a physical manifestation of all of the emotional turmoil that was compartmentalized into different areas of my body as physical ailment. I say this because as I have dealt with a lot of “my shit” and in times where I have noticed an improvement in my mental health I have also noticed coinciding and parallel improvement in my recovery rate or rate of improvement in a muscle movement or strength.
I know for fact that I hold a lot of tension. While some have “no chill”, I have ” no relaxation”. I have been previously described as one of the most tense people some know. Everyone is always trying to get me to relax. This is why I have a pick that I fidget with whenever I leave my home these days. I find it significantly more discreet to flip a pick between just three fingers as if I were fiddling with a pen. There are however a few people in ny life that just being around them can bring me to a calm, zen place mentally where I feel most hippie-esque. It’s not just the zen in those scenarios it’s knowing that with those people I can let my guard down and be honest to a fault without social consequence. The ones who check on me when I’m quiet because they suspect that I’m not sleeping or my pain levels are higher than I’m openly admitting to.
Being chronically ill I fully acknowledge that I count my energy in spoons, sometimes I have five for the day and others it’s five for the week. I have no desire to be around those that suck the life out of me like a positive vibe leech. I prefer to only spend my free time with people that recharge my batteries with laughter, connection, and good conversation.a few acquaintances recently claimed that they never laugh as hard as they do with me with other people. I guess I’m just willing to try and find that heart chord in conversation that will make someone laugh until they cry because I am familiar with what used to be an internal abyss of darkness.
More recently, last year I got back into counseling after my bottom surgery because I needed to process some old trauma aloud and I was finally ready to say my piece to find my peace. After each session I noticed my body starting to hold less pain and less tension as I was healing this seventeen year old soul wound. It continued to improve and eventually I started to feel a lot better on my good days and even the days where I cannot get out of bed due to physical pain are not as bad now that i survived my own mental prison. Even if it was the movement of a single digit of a finger or toe I notice a functional difference each time my emotional space improves.
It requires years of self analysis and knowing my own physical limits to even begin to gauge the amount of energy (spoons) “re spoon theory” to try and gauge how much I can do in a day. Some days I have the spoons to complete an entire weeks to do list in half the day and others it takes me all day to complete a single thing because my pain levels are just too high. My transition and getting my hormone levels corrected was an act of creating more physical energy in my body and during good months even having more good days than bad.
Prime example: I recently had a 6 day migraine that left me with zero daily spoons so I mostly just ate when I had to, bathed, and rested. I can tolerate the pain, but the light sensitivity and nausea really knock me down a lot. I’m still trying to bounce back from it, but I’m regaining energy daily thanks to proper exercise and nutrition. The week prior to this pdin spike I had had more energy than I had in quite some time and was getting lots done so I anticipated being knocked on my ass, although I did not anticipate it being so bad.
With a little bit of caffeine I can push through most levels of pain expect my max pain tolerance, which in turn makes it that much harder to notice thet I’m pouring from an empty cup that lacks physical energy. At least I’ve gotten better at taking a week off when I need to. I may be stubborn and willing to do what I have to to get things done, but I understand that in being an empowered, disabled, two spirit woman I need time to rest and recharge, and I will enjoy every second of it.
As autumn begins to transform into winter I find myself pondering the changes for both better and worse in all aspects of my life. From the analysis of friendships to the assessment of paralysis recovery wins and losses this year has been a bit of a whirlwind. I keep hoping that if I pause long enough to catch up my head will stop spinning. In the process of healing myself both physically and emotionally I have come to terms with the reality that I am not the person I was a year ago or even just six months ago.
Friendships had always been weird for me I grew up as a sick kid that spent a fair amount of time in the school infirmary. It was not until I was a sick adult that I made friendships that lasted throughout the ebb and flow of years of growth. By the time I was reaching adult hood I was over two years into my paralysis recovery and grieving the loss of my favorite human and best childhood friend. Albeit painful, I truly believe that it helped me gain the authentic social circle I have cheering me on through the good, bad, and ugly of this entire process. Sure I’ve lost many friends and associates along the way because they needed more attention than I could give, but I just hope they found the people they needed in their own lives.
Having true friends to share those things with has made my recovery significantly easier to process knowing that I have never once been alone in it. That being said, this year of my recovery topped the charts for pain, which I did not think was possible after last year. The bad days were equal in weight to the great ones though. Despite the pain I had a bunch of little things micro-movements if you will over the last six months since my grs and being off testosterone blocker. This year I have begun to regain my opposable thumb and it may not sound like much, but I am a solid ten percent better at picking objects up and holding my guitars. As well as improved ankle strength thanks to a new anterior foot orthotic so I stumbled less everywhere I went.
I know I have been beyond absent this year but I hope that everyone’s year has had equal parts good to the bad.
Whether you call it “the daily grind” or the “rat race” every one of us reaches a point where we have to take a step back and assess how to make our daily lives more sustainable so we spend less time running on nothing.
I will admit even coming up on six years in hemiplegia recovery and I have yet to find the perfect balance between physical output and rest. In fact I am skilled in overdoing it to the point where I am in too much pain to move and spend a few days trying to recoup.
More recently I have been working towards a better balance so that I do not require as much rest, but I am not making headway on the solution.
One thing that has helped me better assess the spoons I have is just breathing. Taking just a couple of minutes to pause, be present in my mind, body and environment. Then decide whether to continue on with physio/occupational therapies or to focus on something else and let my body rest.
Some weeks I still ignore my body because I assume that I can keep pushing a little bit more until I physically cannot move my arm or leg without wincing in pain and thus becoming couch bound.
I have been fairly strict with my recovery schedule this year. Planning my entire week around appointments, recovery, self care, and social outings, but lately I misjudge the amount of energy I have and end up cancelling all my social plans. This is a problem of having a goal in mind and being too driven for my own good.
Just like everyone else I’m very goal oriented and I would like to reach said goals in the shortest amount of time possible without injury. This is something I have to fight the urges to constantly be working towards my goals. Reminding myself that in order to heal rest is required, not earned as a reward.
For me the renewal in my chaos is the hour a day I put aside to do something unrelated to my recovery that reminds me of all the things I am grateful for in life. Usually this involves a creative outlet of various mediums, but sometimes it is spent just meditating.
Everyone seems to think that with enough hard work and enough time that one day I will miraculously wake up fully recovered. the reality is that I will have to maintain my dexterity, strength and range of motion for the rest of my alive days on this Earth, unless I want to backslide and revert the progress I have made over almost sixty-three months. Each and every time I have a bad day physically is a great reminder that over any other thing my health comes first. yes Some days the pain levels are uncontrollable and I would love to just say,” f#ck it”, but unfortunately I am a highly driven person and I have goals to attain, and missed opportunities to catch up on.
No My physical and visual impairments were never penciled into my dream life, but in spite of the terrible days the few good ones make every second of the struggle worth my time. It has taken me years to come to this conclusion, but all it take for even the worst of days to become good ones is a single movement or motion done correctly with the appropriate muscles firing on command. during the plateaus and the pain spikes these over joyous moments are few and and far between, but somehow they are the times that keep me dedicated to my own recovery.
Desired outcomes are not always what you get when it comes to neuroplacticity. Only now am I beginning to rewire the mis-wired neuropathways in the left side of my body. It is actually quite intriguing to be able to get a muscle to perform the desired movement with help of neuro-muscular electrical stimulation. from the muscles in my ankle that were performing opposite functions to the muscles in my arm and wrist that didn’t fire at all, with this body I occupy each and everyday is a whole new adventure.
Sorry I have not been keeping up withe the regular updates, I have been struggling to come up with topics for this blog lately… feel free to drop any topic suggestions down below or shoot me a DM on Instagram @mx.addyblake
Yes I still live in chronic pain, yes I still struggle to not slip back into my eating disorder, yes I’m still recovering from paralysis; but I am so grateful to be where I am. One can choose to see all the things that are wrong in your life or you can choose to make a list of all the good things no matter how small and be blissfully happy with what you have. No, I’m not saying you should ignore the bad, just do not make it your focus if you cannot do anything to change/fix it.
I could lay in bed at night and he angry that because of my visual field loss nothing ever looks the same from day to day, week to week. Instead I have always found a joy in seeing everything a little differently each time depending on lighting, time of day, etc.. all I have to do to not see something or someone I do not wish to encounter is turn my head just ten degrees. That my friends is a gift and saves me from being deadnamed and misgendered all the time in public. sometimes you just have to learn to accept things as they are and find the angle that makes the predicament a lot or at least a little easier to swallow.
I could even wake up every day and decide that I hate being trans and in turn hate myself. This is so common in the trans community and leads to a lot of internalized transphobia. Instead I cherish that I live in a day and age where to carrying degrees depending on location I can choose to experience my non-binary genderfucked self however I feel like it from day to day. Everything in your life no matter the situation can be adjusted with your mindset alone.
One thing that helped me train my brain to see things in a more positive light is to fund 3 to 5 things that I’m thankful for each day when I wake up before I have to roll out of bed. Sometimes if I’m running late like on my way to my surgical consult this past week that moment to count off my list was on a bus and the dorky smile I made counting it off in my head made a few others smile too.
In the aspects of my continued recovery the thousands of hours I have spent on the physical rehabilitation are beginning to pay off. Every few weeks I am seeing a noticeable difference in my functionality and my energy levels. Despite my pain levels being higher, twice as high as they normally are, I am left hopeful in what the next couple years for me. The end of this tunnel is definitely in sight even if it is still up to twenty-four months away.
My pain levels only spiked because the athletic level of determination and perseverance is functioning at the warp speed it used to. This means that for each activity and retraining exercise I am putting in maximum effort for maximum result because I am sick of having a physical impairment. I will admit that I have been burning out in shorter time-frames because I refuse to give up, but all of this has left me feeling entirely optimistic about everything in life. I have even had to take some time recently to figure out what my life and career goals may be once I have reached the point where I can move onto bigger and better things.
For the first time in years o not require thirty ounces of coffee just to barely get through the morning. Yes I have had the energy to double my daily physio routine and honestly I would continue, but after the second round is where I start to lose mobility and dexterity. I know that if I continue at this rate over the next year or so that I will be able to go and pursue any of my hearts desires. It is medically pretty rare that anyone with a similar diagnoses gets as far as I have yet alone still has the drive or desire to continue to push forward after five years
What have you done recently that you are proud of?
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?