Content Warnings: discussion of suicidal ideation, anxiety, depression, PTSD, SEID/ME/CFS
I think to truly understand how my symptoms affect my daily life, you have to know a little bit about me before this happened. I went to George Brown College, graduating with honours, for Special Event Management. Events are something that I’m extremely passionate about. I loved the hustle-and-bustle of the industry, the way that I had to solve problems on my toes, and took charge of situations. I loved the immense hard work that goes into an event from start to finish, and got a huge sense of pride from a great job.
And now, at twenty-eight years old, I don’t think I’ll ever be able to manage that job again. Let alone a less stressful one. I thrived under pressure and was constantly in motion. I rarely stopped to take a break, because I just wanted to keep going, keep pushing forward.
Unfortunately, this led to my second-hardest battle with a major depressive episode. By twenty-five years old, I was struggling with my mental health, working in a toxic work environment that left me with an out-of-control anxiety disorder. I had hit my first road block: a major depressive episode that brought along suicidal ideation. I wanted the world to stop moving. I wanted peace from the prison in my mind.
So, I quit my job. I moved back in with my mother after living on my own for six years, and I accepted that Prince Edward County would be my home again. I had a month and a half off. I worked a part-time job, focused on getting my mental health back, and before I had a real chance to put in the work, I got sick.
In June 2018, I got the “worst case of mono” the ER doctor had ever seen with a really bad case of sinusitis. The sinusitis alone had me awake for days as I struggled to breathe; my sinuses were full, my throat sore, sore, sore. In just a month, I went from being a busy bee, working 50+ hour weeks, to taking a short break, to becoming completely bed-bound for months.
Mono changed my life, and not in a way I’d wish on anyone. I could barely manage to get myself to the bathroom most days, and if I did, it would knock me out. I didn’t sleep a normal schedule like I used to; I would be awake at all hours, unable to sleep for 48 hours, to sleeping over 24 hours at a time. All because of mono, the “kissing disease” that I had very little knowledge of before contracting it. Exhaustion, depression, anxiety, and PTSD overtook me.
By the time I had mustered up any energy, four months had passed. And all I had energy for was getting in the passenger side of the car and going for a drive with my mother. I passed out the first time we did it. I was drained of any life I had.
And as I got a little more energy, as I was able to get out and move a little more, the exhaustion never went away. The depression never went away. The anxiety only grew stronger. I went into a very dark place, mentally, and physically.
And it’s barely gotten any better, almost 3 years later.
It’s so hard to write this now. I’m twenty-eight years old. I had big dreams. I was going to get back on my feet, score a job as an event planner, and maybe write a book or two. I would be able to hang out with my friends without a single care in the world. And now, it all feels dashed away.
I can’t make any concrete plans (pre-pandemic) because I have no idea how I’ll feel on a day-to-day basis. I wake up without knowing if it’s going to be a good day or a bad day. And a good day is doing dishes for fifteen minutes and taking a rest for an hour or two in response. I’m struggling in a way that I have never struggled before. It’s more than just being majorly depressed, with no hope for anything. It’s more than the crippling anxiety of doing anything.
It’s about the fact that I have no energy anymore. It’s like once a day, someone comes and pops my balloon of energy and bam. That’s it. I’m done. I’m panting and struggling to keep my eyes open. I never know when they’re going to pop my balloon of energy. Sometimes, I have good days when I can manage to get out of bed and to the couch, sometimes I have good days where I manage to leave the house for grocery shopping. But most days?
Most days are filled with a dark cloud hovering above my head. I never know how many spoons I’m going to have in a given day (Read: The Spoon Theory). I don’t know what I’m capable of anymore, because the smallest thing can make me crash. And when I crash, I crash hard. It’s like I’ve hit a wall and I can’t do anything but lay down and pray that it won’t last longer than a few days.
Between my mental health and my physical health, I cannot work. I can’t even tell you which is harder to deal with, because they both have their own con lists a mile long.
But I’ll try to explain why I’m applying for disability and why I can’t handle a job.
Let’s cover the physical stuff first.
I’m pretty sure I have SEID/ME/CFS (systemic exertional intolerance disease/myalgic encephalomyelitis/chronic fatigue syndrome) - something that I won’t receive a proper diagnosis for at least two years (that’s when I have an appointment with the Toronto Womens’ College). The reasons for this are that it is thought that mono can trigger this, I have unexplainable fatigue that haunts me, I have constant headaches that make it impossible to stare at a screen for too long, unexplained muscle and joint pain, unrefreshing sleep, problems with my memory and concentration, dizziness when moving positions, and I’ve struggled with enlarged lymph nodes in the neck (even going to the hospital for it because I struggled to breathe). I, with my family doctor, have exhausted pretty much every other option of what this could be. I had hoped it’d be an easy fix like an issue with my thyroid, but the shoe doesn’t fit.
What’s the cure? you may ask. There isn’t one. You can only treat the symptoms of SEID/ME/CFS. That’s what we’ve been doing, but it’s not enough to slap a bandaid on it and expect that I’ll somehow be okay. Because I’m not. I struggle with all these things on a daily basis, and that doesn’t even cover the mental hurdles I’m struggling with.
The anxiety, the depression, and the ADHD would be enough alone for me to be eligible for disability. Because I have severe anxiety, about particular things, and in general day-to-day anxiety that make it really hard to do just about anything. I used to be fearless, and now? Now, I’m struggling in a way I never used to, in a way that I feel like there’s no way out of. Sometimes, on my best day, I have a hard time leaving the house because I don’t know what’s going to happen. It doesn’t matter if I’m driving my girlfriend to the grocery store to shop for us; I’m filled with high anxiety about things I cannot control. I’m doing everything I can - taking meds, meditating, journalling, etc. - and I’m still struggling.
My depression comes in waves; some hit harder than others. Sometimes, the undertow is so swift I can’t even see it coming. Mostly though, I recognize the signs when it’s happening and I do everything I can to control it. However, more often than not, I am reliving the lesson that I cannot control my depression. It will always be there, lurking, waiting for me. It will always be something I fight.
My PTSD is another story for another #MeToo movement. I thought I was mostly over it, thought I had moved past it, only to have the flashbacks and nightmares start up again. It’s not something I like talking about, so I’m going to leave it at that.
I could go into detail about how every symptom I have makes my daily life harder, but I think I’ll save that for another day.
This journey began three years ago, and it doesn’t feel like there’s an end in sight. So, here’s to turning twenty-eight, applying to disability, and hoping for a brighter, less painful future.