My tongue is swollen, and I have the constant malaise of a tongue too big for the month. I keep on biting it around the edges, and it’s difficult to speak. It’s a side effect of the chemo pills I take for Rheumatoid Arthritis – the Methotrexate.
I take folic acid pills for this issue, and I started at 1 tablet a day, which increased to 2 a day few months later. Now, 9 months into my chemo treatment, my tongue has been swollen for days, and ulcers have been opening painful sores inside my mouth again. I took an extra tablet of folic acid this morning. From now on, I’ll have to take 3 tablets a day.
The poison in my body is inching up in volume, little by little.
If you followed my public social media or the blog, you would probably have no idea that physically and psychologically, I was going through a pretty rough patch for the past 2 months. It was almost comical how my life took a complete 180 after I wrote my monthly round up of January, where I was able to talk about how much I had accomplished in that month.
It was kind of like life had me in a wind tunnel, where I was being flung around from side to side, unable to get a footing in any part of my life: mental health, eating habits, work, or future planning. I was exhausted, gained weight, ate horribly and compulsively, felt lost, and just completely burnt out about life, too tired every day to do much except work, eat, and sleep.
Burnt Out @ Work
Since the beginning of February, I spent a few weeks completely burnt out, crawling into bed by 7:30 or 8:30 every night, waking up the next morning still just as exhausted, only to drag myself out of bed to go to work, wanting so desperately to just curl up and take a nap somewhere the whole day.
Sometimes when I was in the office, I would just sit staring up at the ceiling for a few minutes after 5PM, having no energy to pack up and go home. I also got sick for a few weeks again in February, which did not help with my overall exhaustion. I then got sick again in beginning of April while I was in Maryland, but it turns out it was hay fever. I had been out of DMV pollen range for so long that I had forgotten how horrible my spring allergies are!
Work itself was burning me out as well. As of beginning of April, I’ve been at this company for a year and 4 months. This is the longest I’ve been at a single company since I started working in winter of 2014.
For the first time since I started working, I felt like I found a place where I want to stay and develop myself as a professional, surrounded by people I like, with abundance of new technology to play with.
For a few months, I felt lost and directionless, having spent a whole year in one capacity. I began to wonder what my value was at my company and my team.
My manager and my team didn’t deserve my insecurities. They have made it abundantly clear over the past year that I am a valued member of their team, and that despite my health challenges, I am exceeding my expected output, and that I should take it easy.
It’s that negative feedback loop, where your mind starts looping to extremes about everything going on in your situation and life, and you begin tumbling down a long steep path into self doubt and insecurity.
I felt lost, unable to figure out what steps I needed to take in order to continue my corporate ascend or attain higher level skills necessary to continue my career development. I am a goal-oriented person, and always need a goal or clear steps to continue my personal and professional development. (I imagine it stems from my Executive Function Disorder and my need to have clear directions for everything before my Anxiety can be calmed.)
After a few weeks of being completely burnt out, I spoke with my manager during one of our 1 on 1’s. We didn’t get much resolved, but I felt better the next day, having at least attempted to convey my dilemmas. We set a new goal, and I started to slowly change my thought process to prioritize learning and expanding my expertise as opposed to focusing so much on the job title or the speed at which I got promoted.
I had gotten so used to changing jobs and moving on to new things every year that I had come to expect it as the norm, but as I went through many people’s LinkedIn profiles, I began to realize that most people, even badass people doing badass things, spent the first few years at one position or another, not speeding through positions and ranks like a cannon ball.
I will admit, I was a ball of negativity at work for the past few months.
It sounds strange, but what helped me “come to my senses” was a book by Jennifer Romolini, called Weird in a World that’s Not. Somehow, the simple concepts that your coworkers want to work with a friendly and positive person, not a debbie downer (even if they do enjoy having a bitch buddy), and that you don’t contribute to making the work culture a better place by having constant bitch fests about the injustices of some policy or another, but rather by being that friendly face people want to see and talk to, really rang true with me.
I highly recommend the book to anyone who’s feeling a little lost and a little out of place in whatever context he’s in at the moment. Since reading this book, I’ve tried to smile more, be more pleasant, and involve myself in productive ways of making concerns heard, like taking part in ESAT (Employee Satisfaction) Focus Group meetings.
I’m focused on what I can take from my experiences, and in attempting to chill out and enjoy the ride instead of being in a rush. As Jennifer Romolini wrote in her book, I’m only in this specific position, doing this specific job, with these specific people for a limited time, and I’m never getting the “now” back.
The Social Media vs Reality
Life the past few months have been a roller coaster of emotions and internal drama. But atop my Social Media accounts, I’m still living my “Great Flashy New York City Life.” I still post pretty #Foodstagrams, snap sunsets with city skylines, and furry friends.
While I haven’t posted as much on Instagram, and haven’t been involved heavily in the Twitter Dev community or in Facebook, the few posts I did make matched the aesthetic I like to bring to my photography and posts, and didn’t betray the fact that I was barely getting out of bed.
Weeks pass by without being able to crank out blog entries, and I felt so stuck last month that I started a new blog series as my sole post for March.
They say “Don’t compare yourself to people on Social Media, because you’re comparing your Life to their Highlight Reel.”
I’ve always nodded at that concept, but looking at my own life, it’s so true. I don’t really share my struggles as a person living with multiple disabilities, chronic pain, and chronic fatigue. I don’t share the day-to-day struggles of being me, and what you see online is my highlight reel.
My highlight reel is vastly different from my actual day-to-day, especially on days I am flaring.
While I have tried to talk about struggles of Brain Injury or Brain Surgery or having Chronic Illnesses, it’s usually done from a context of being in a better place, since during the crisis period, I do not have enough energy to talk about my experiences.
So the real nitty gritty of my life as a person who requires help walking, requires help washing dishes, requires help opening the bedroom door, requires help getting out of bed, requires help changing… Is not really discussed. And it probably should be.
Slowly Moving Along
I am very aware of the strange paradox of working out: Working out makes you less exhausted, but you are too exhausted to go to the gym. I haven’t gotten back to the point of getting back to the gym, but I have started trying to meal prep and cook a large batch of food to eat throughout the week so that I am not tempted to eat out or buy unhealthy foods.
They say it matters more what you put in your body than how much you exercise… So I am going to slowly begin building my fitness back up by walking and hopefully going to the gym, but starting with what I can control more.
Last Sunday, I made a huge batch of Slow Cooker Turkey Chilli, which I am looking to write up recipe for so you can try at home too!
Here’s a sneak peek…
Career wise, I am trying to convince myself to relax more, and take it slowly. I don’t need to be getting a shiny title or huge pay bump in a year, or even the year after (or even the year after that!). I have began studying for my first AWS certification (fingers crossed, I can take and pass it this summer, but perhaps I’m being overambitious again?), and have been taking on more responsibilities at work, trying out new tech and diving deeper into tools I already use.
I should be focused on lessening the stress I put on myself (and the stress I allow work to put on me) so that I can work towards getting into remission as quickly as possible so that I can stop having to take chemo, and hopefully move the heck on from this chapter in my life.
Taking the Time to Find Myself
There’s really no use in having a “career” or a shiny title when my health, and in turn, my quality of life, suffers.
My body has made it apparent to me that I need to put breaks to my cannon ball ambitions and anxiety, and yet, as the medication helped me regain most of my independence, I forgot how it felt to lose my independence rapidly.
For now, I need to be focused on improving my quality of life, decreasing my stress levels, and finding out what I really want out of life, and where my values lay. It’s going to be a long and difficult process for me, but I think I’m finally ready to begin peeling back the layers on what holds most importance to me in my life.
What’s the best self-care routine or pampering you give yourself when you aren’t feeling well, or need some self-TLC? Share with me, because I clearly have no idea how to take care of myself!
This post was featured on Asian Women for Health Blog.