Join Date: Nov 2012
11 months and counting
New to this website and thought I would tell my story. This is an exhaustive account of my battle with what I now know to be PCS, but for months believed to be severe insomnia, depression, anxiety, and mononucleosis. My hopes in writing this is that someone out there can relate and draw a glimmer of hope from my story. Nothing is permanent, and I hope my account can serve as testament to that.
After a minor concussion during a squash game December 2011, I was left feeling fairly miserable for a number of weeks. I was able to move my exams and write them at my convenience. I was a third year University student with diagnosed ADD but was otherwise completely healthy. I recovered fully by January and thought nothing of the incident.
In late April 2012, my health started to rapidly decline. At the time, I was studying in Sweden and had no conception of my access to the Swedish healthcare system. I felt dizzy, confused, extremely sensitive to light, slightly depressed, and developed a low tolerance to alcohol. My short term memory all but faded. I couldn't sleep and was constantly exhausted throughout the day. I credited the symptoms to the constant Swedish sunlight, rising at 3am and setting at 11p, causing my minor insomnia. I was confident that my homecoming to the States would cure me once I could sleep again.
I started a new job immediately upon returning from my Exchange program. I didn't give myself enough time to recover from jetlag and started working roughly 8a-11p daily, and was sometimes assigned to be on-call at night. My bizarre condition was seemingly improving, and I was able to put it in the back of my mind and vowed that normal sleep would cure me. Upon finishing work in mid-July, I had time to catch up on months of lost sleep. I slept 12-14 hours a day, waking up feeling confused and "hazy". I remained constantly fatigued throughout the day. Days felt as what I described as "choppy"; I couldn't remember what I had done earlier. Nothing seemed to phase me; the difference between good or bad didn't exist, things just "were". I attempted to self cure by remaining active and busy throughout the day, but found myself left exhausted and unable to follow through with my daily plans. Psychologically, I was a wreck, wondering when, if ever, I would recover and constantly wanting my "normal" self back. I constructed causal theories, allowing the mysterious illness to literally consume my thoughts and dictate my life. I couldn't look at my friends, family, or strangers without considering that no one felt like I did. I became disinterested in leaving the house and my once outgoing, outspoken, and energetic personality became bland and depressive. My short term memory completely failed me; in my worst stages, I struggled to remember what I was thinking about a mere 30 seconds before. I suffered from a constant headache. My brain became "hazy"; I went about my day passively, feeling like my actions were disconnected from my thoughts. I became miserable to be around, constantly complaining and making excuses to account for my bizarre condition. I kept questioning what I did to deserve this and how this happened to someone with a normal medical history. I finally saw my family doctor in mid-August and was diagnosed with Mononucleosis. I believed this aptly explained the fatigue, but failed to give explanations for the mental symptoms. I felt positive about the diagnosis but slightly unresolved. The doctor said my symptoms would start to clear up in a matter of weeks, and that I would be fine for the start of classes in mid-September.
I returned to school hopeful, but found myself unable to lead my normal life. I started to see a counselor to address the condition as a mental health issue, but deep down knew that there was a physical cause. I was encouraged to separate "things I know to be true" from "things I think are true" in an attempt to approach the illness as the product of depression or anxiety. I continued to feel the seemingly bizarre physical symptoms, but became anxious that my "new self" could not meet the social, educational, and extracurricular demands that I had once been able to manage with ease. My in-class focus was eliminated, I ate one pathetic meal per day, and had to build in time to lie down and rest. I was truly at my worst and was ready to drop out for the semester. Basic tasks became a burden. I accepted that I was depressed, but only because of the physical ailment, not because of external forces. My friends offered support, but I created a block because I felt like no one could properly understand or relate to me. I failed to be self-sufficient to the point that I asked my mother to make the long drive to school to help me. I started vitamins to cure the mono, and initially felt better; however I knew that mono wasn't causing my ailment. An untimely breakup pushed me over the edge, and I started to lose all hope of recovery. I felt depressed, frustrated, and confused, as my mind continued to fail me. It truly takes feeling your worst to be able to recover.
I restarted my ADD medication after a 6 month haitus (my studies in Sweden required such little work that I could do them without having to use my medication). I started on a new medication and immediately felt better, like I had more energy. I felt positive, and indicated this to the mental health nurse I was seeing. When the medication wore off, the symptoms would return in full force, hitting me harder than before. I couldn't focus on my assignments and continued to avoid social obligations. I met weekly with both a physician and a mental health nurse. The mental health nurse pushed me to self-cure mentally, but I couldn't resolve my feelings towards an undiscovered physical symptom. I continued to push for an MRI, and placed my hope on a physical ailment. I needed a tangible cause; nothing in my life was causing me to be depressed. Not once did the physician or mental health nurse consider the December concussion to be a cause. I was prescribed an anti-depressant to help me sleep, but found that it failed to both put me to sleep and keep me sleeping. I would wake up at 6, my brain still running.
After a minor epiphany with the mental health nurse at the end of September, I accepted my illness to be anxiety/depression and that it was perpetuated by my own negative thoughts. I was prepared to move forward with whatever treatment the mental health nurse suggested. Resolved, I determined that good, natural sleep and therapy would cure me. I turned my focus more towards schoolwork and my social life and attempted to make a recovery.
By mid-October, the helpless calls to my parents had subsided and my overall health started to ameliorate. My feelings of "if I was healthy..." also subsided, as I slowly accepted the hand I was dealt. I stopped seeing the mental health nurse and the physician. Still undiagnosed, I felt myself recovering week by week and was prepared to be patient. My thoughts of my illness turned into those of my recovery, my surroundings, and my studies. I met a girl and started to resume life as normal.
In mid-November, I was finally given an appointment to a neurologist (CDN healthcare involves long waits for specialty appointments). On Thanksgiving day, I saw him and was diagnosed with post-concussive syndrome. I had integrated my illness into my life, and receiving this diagnosis was a positive outcome. Recovery can and will occur, he comforted me. I felt relieved that this wasn't my fault, and most importantly wasn't a product of my mind.
I struggle to write this. Remembering the past 6 months is both difficult and emotionally draining. It pains me to consider how long I've been ill and how many opportunities and experiences have passed me by.
Today, I am not fully recovered. I still sleep poorly. I still have difficulties with memory, attention, and fatigue. Despite my unfortunate, unfair position, I have hope. Hope for recovery. Hope for understanding and health. Hope that someday I can be my old self again. Hope that doctors, friends, and family can understand our illness and provide it with the importance that it merits. Hope that people will never discount the brutally damaging effects of a head injury and not downplay the profoundly awful effect that it has on ones life.
As I recover, I continue to rediscover myself. I know that when this subsides, I will emerge a stronger, healthier person. And never again will I discount the importance of good health.
There is hope, friends. You're not alone in this battle. I, along with thousands of others, have been and still are fighting PCS. This is not your fault, and you can't control this. You didn't ask for this and unfortunately you can't make it go away instantly. But recovery is within your reach. Positive thought and distraction have served to be the best medicine. Surround yourself with those that care about you and can get you through this. Understand that illness is temporary and you will again be yourself. I've managed to internalize this, but it wasn't without the help and support of my family and friends. Talk to someone; exist outside your thoughts and theories. Connect with others and understand that you're not alone. Internalize hope and believe in recovery.
Thank you for lending your ears. This is more important to me than you could ever grasp. Keep fighting, there is hope for recovery.