In the Beginning

Jen is staring straight into the camera with a slight smile. She is wearing a black dress, dark red lipstick, and dark eyeshadow.

Concussion & Post Concussion Syndrome

March 20, 2019 I sustained a concussion at work. I did not lose consciousness and continued working until the end of the day. I then went to the ER, where I waited for several hours and received a quick exam to determine I did have a “mild” concussion. Follow up with your doctor if you’re not feeling better in three days, they said. Two weeks later, I was diagnosed with post-concussion syndrome.

Information and Content

I created this blog to raise awareness of concussion and post-concussion syndrome. Despite months of research (around screen limitations) there is very little information available. The UK and Australia seem to have the best resources available.

Anytime I find a blog, Instagram, or book on traumatic brain injuries, I am thankful for them. Hopefully this will help someone else, in addition to being a living document for me on progress being made.

The majority of concussion/post concussion syndrome information is related to sports injuries. My concussion was not a sports related accident. I was on a playground, supervising children, when I swung around the wrong way and hit the left side of my head on the metal support for playground equipment. According to statistics, sports related concussions are the smallest portion of concussions that happen. Car accidents, falls, accidents such as mine are far more common, yet there is very little information out there to help someone with PCS or their family members who have to manage all the issues that suddenly are part of their lives.

My Experience

At the time of my injury I was working full time, attending online college to acquire a Bachelors of Cybersecurity Management and Policy, with a minor in Communications. I had five classes to go, with graduation set to be Spring 2020. I was healthy, following a low-carb nutrition plan and working out when time allowed. Things were good and heading towards awesome.

A split second changed everything about my life, and I am learning to deal with the symptoms, some of the limitations, and return to some semblance of my former life, including working towards the goals I had set. I don’t believe in the phrase “new normal”. FUCK that noise. I will manage my symptoms and get my life back, to the best of my ability.

Now…everything has been reset. My entire life was literally upended. It affected my goals, my relationships with my family, my work, my hobbies, my ability to function like a neuro-typical adult. College is on hold indefinitely, as I cannot keep up with the course work required in an upper level Cybersecurity class. Prior to the injury, it was fairly easy to manage. My working memory is garbage, although my long term memory has stayed intact. Short term memory is also fairly nonexistent. It works some days. Other days, I may not remember something you told me five minutes ago. I could ask you the same question fifteen times in an hour, and honestly not remember doing it.

I have been out of work since March, on total temporary disability (sporadically, but that’s a different post) except for a one month attempted return to work. From Aug 12 to Sept 10, I tried working first four hours a day, then three. As the need for accommodations increased, my work eventually put me on indefinite leave, until I can return with no restrictions. They filled my job last week, so when I go back (if) I will be placed in a different job with no guarantee of my former salary. That stings. I hate not working.

I went to physical therapy for ocular and vestibular therapy. I couldn’t drive anywhere until mid-June. Luckily, many things are within walking distance and PT prescribed daily walks to build up endurance, but still. It was exhausting.

Day to day, I never know if today will be a good brain day or a bad one. Some days I feel almost normal, with a slight headache in the background. (Thank you, Emgality shots and Tylenol!) Other days, my brain refuses to cooperate at all. Nothing I say comes out right. 45 minutes on a computer screen, even at dark setting and wearing blue light glasses, makes me nauseated and frustrated. The words escape, and I lose what I am saying mid-sentence. I run one errand to pick something up from the grocery store and the lights/people/noise cause sensory overload.

There are midline days where I can manage two hours or so consecutively at a screen, working on things like this blog, emails, research for recovery. Then I am overloaded and have to lie down and rest. Despite finishing PT in June, my optometrist is sending me back to PT for my eyes, as they have tracking issues and focusing in/out on words. They wiggle, which while interesting, makes reading frustrating.

Some days everything starts out fine, and rapidly deteriorates. Some days there is little to no headache, other days one swoops in and is bad enough to require lying down in the dark. Symptoms hit at random, and you just never fucking know what is coming.

Former hobbies: reading, hand embroidery, running–none of it works right now. I can read books, but the content is immediately gone. Audiobooks are okay, but even then, I usually am listening to something I’ve already read so I can remember it later. Hand embroidery is possible, but slow and extremely frustrating. Lately it’s been a non-hobby because the difficulty of it is too frustrating. Running? I tried alternating walk/running on the treadmill a few weeks ago. I was out of commission for two days. Losing huge chunks of how you spent your time and who you were is painful. I loved reading, and learning, and pushing the boundaries of what I could do. Now I am just trying to make it day to day without my brain feeling like a bowl of mashed potatoes.

I can manage yoga, which is great for strength, balance, and learning to empty your mind out. I can do walks, in natural light. Most sunlight doesn’t bother me. Fluorescent lights? 30 min and instant migraine. When I am home, I normally don’t have the television on, I have an audiobook on low or quiet. Normal noises like people in a car talking, or a store, are too loud. I carry earplugs with me everywhere I go.

What has helped the most so far:

Finding a neurologist who specializes in concussions and has 30 years of experience. My physical therapist was amazing, but she moved, so no luck returning there. My counselor is an absolute badass. My family has been incredibly supportive of this train wreck of an injury.

I saw on someone’s IG or blog post, (to be credited when I remember where I read it) that just because you have a doctor, doesn’t mean they are a good one. If your doctor isn’t trying to help you, or you feel dismissed when talking to them, go somewhere else until you find one that can help. Keep pushing and advocating for yourself. You know yourself and the symptoms you experience better than some concussion rating system or dismissive nurse/doctor.

Unless you’ve had a concussion, it is difficult to explain to someone what it feels like. How can you still not be better, people ask. What is taking so long for you to recover? Why aren’t you working again? PCS is part of a traumatic brain injury, which covers any injuries to your brain involving trauma such as being hit against something and shaken around. Bouncing isn’t good for the brain. Something no one ever asks:

What does it feel like to have a concussion, then post-concussion syndrome?

Some motherfuckers are always trying to ice-skate uphill.

Wesley Snipes, “Blade”, 1998

That’s how I would describe the last 11 months of my life, dealing with PCS, Workman’s Compensation, and recovery. That’s what it feels like, in addition to managing the symptoms. Like ice skating uphill in a motherfucking blizzard.

Warning: this blog will have a ton of inappropriate, snarky commentary and swearing, so if that bothers you…sorry, but that’s just how it is.