IWSG – Post-Concussion Syndrome

InsecureWritersSupportGroup2Time again for IWSG. This month I talk about my disability. Writing is my therapy for my disability. I do talk about it a lot but I never really identify what it is or how it affects me. Each day is a new challenge and I do feel it is getting worse and worse.

My disability is Post-Concussion Syndrome, or PCS for short. It is best described as a constellation of symptoms, as there is no one defining symptom of it. It is a mental, psychological, and physical impairment. The biggest challenge is that it is mostly unknown, as many doctors are unable to diagnose it.

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Please note that I do not seek sympathy for my condition. I don’t hide from it, but I don’t want you to feel sorry for me so that you will buy my books. But please take into consideration that when I put a book out, it is that much harder for me than someone else not going through what I am.

So what is PCS? In June of 2012, I had a concussion. I sat in an office chair and leaned back. I’ve done this million times and never was there a problem. In this instance, while at work, I leaned back all the way and the chair broke under my weight and I fell towards the ground and hit my head on a filing cabinet. It was considered a mild concussion.

At first I didn’t notice any problems and returned to work after a week of being home. At first I noticed I was quick to anger. My personality had changed. I also noticed my memory was affected and I was easily over stimulated. I could no longer perform the way I use to. At first the Doctors told me that this was normal and it would get better within 6 – 8 weeks. I waited and it got worse. Then the Doctors told me it was a preexisting issue, likely depression. It was complete Bullshit. I know what depression is, and it wasn’t depression.

I was ordered to see a therapist, and she confirmed it wasn’t depression, and while she couldn’t treat me, she identified it was PCS. Eventually I went on Short Term Disability and found a Doctor to diagnose me, though he diagnosed me with Persistent Post Concussion Symptoms. I tried to go back to work under his care, but it didn’t work out. He didn’t really help me with it, just threw pills at the issue.

Not everyone who hits their head have a concussion. Those who do, only have symptoms that last a few weeks. A small few have symptoms that last for a few months to a few years. Nothing is known why this happens, just that it does. It’s mostly known to happens to athletes, such as the NFL reporting problems on this. It is also easily misdiagnosed, as it appears to be other problems.

For me, it is a variety of problems:

  • Light Sensitivity – Bright lights do affect me, including sunlight
    • Looking at white screens on computer monitor affects me, such as the one I am writing this article
  • Head hurts – Not a headache, much different. But my brain hurts. Sometimes feels like my brain is swelling or pushing up against my skull, or my skull is caving in
  • Dizziness – At its worst, I feel like falling over when I walk
  • Physical Fatigue – I am always tired, often lack energy to move
  • Mental Fatigue – While I want to do things, my brain doesn’t feel up to it
    • Often times when I dream at night, when I want to wake up, my brain needs a break and I don’t open my eyes right away, often an hour later
  • Irritability – I’m quick to anger
  • Sleep problems – I sleep more, but often only sleep when I’m tired
  • Concentration – Difficulty focusing on task, really have to push myself
  • Over stimulation – The more sights, sounds, smells or other sensory stimulation I encounter, the more my brain wants to shut down. Often I close my eyes and appear asleep but my mind is taking a break
  • Lacking visual imagination – I cannot see pictures in my head, when I do, they quickly disappear
    • I can see pictures when I dream, but forget them when I wake
    • When I first go to sleep, where my eyes are closed but not fully asleep, I can see pictures and control what I see
  • Difficulty Contextualizing – It’s hard for me to contextualize an idea or compare two things together, often times I lack vocabulary or lose words.
  • Memory issues – I am very forgetful
    • My short term memory is all but shot, I don’t recall things very well
    • I have bad access to my long term memory, don’t recall things as fast as I want, often taking days to recall something, like a very slow computer

This is all that I can really recall of my problems. I’m sure there is more. Some days are better than others. Any major activity can wipe me out. Like filling out forms can hinder me for a few days. Driving does affect me, but not while I do it, but afterwards. Going out shopping affects me; if I go to one store I’m OK, especially if I drive to and from, I’m OK and need a break when I get home. When I go to multiple stores in a single day, I will feel ready to pass out the more stores I go to.

Day to day, when I stay home and seclude myself from the world, it is still difficult. Like this past weekend, I rearranged my room and went to a few stores and it has hindered me this week. I am pushing myself to do this article even though I don’t want to. Thank the Internet Gods for spellcheck. But I wake up with my head hurting, ready to fall over not wanting to think or do anything. It does affect my relationship with my mother and her husband, as they want me to do chores and despite wanting to, not always able to do them. No one can truly understand what I am going through.

Energy drinks help. It can super charge my mind and when I go out or need to write, it can help offset some of my problems for a short time. When it gets really bad though, energy drinks are useless, helping only when I feel low in energy (mental and physical). When it gets bad, like lots of pain, alcohol can help. It helps dull the pain. These days I am taking aspirin every day.

The hardest part is the loneliness. At one point in time I had the support of a lot of friends, but when my disability hit and I wasn’t able to go out, my friends disappeared on me. Of all the friends I ever had, I only see one of them every few months and I have a few friends online, but everyone has their own life to deal with. I try to distract myself as often as I can about how I don’t have very many people to talk to. No one to share my writing ideas with. Even just seeing people to give me positive energy. I have found when I do see my one friend, I get a lot of motivation and energy to do things.

I question if those people were ever my friends and more of friendship of convenience. When i make the effort to see people, we are friends, but if I need them to make an effort to see me, that’s asking too much.

Writing is a way to distract myself, given that I am not in pain. I don’t have medical insurance and I’m unable to work. I had hoped that I could make a career out of writing to get money to treat myself, but I know it will take 5 years for that to become a reality, and even then I am getting worse and worse.

I tend to go outside during the night time. I do go out during the day time, but only when I need to go to the store. I am broke and don’t go anywhere unless someone is willing to help me out. Even then, it is rare that I do anything as my mind is unable to do a lot. I am trying to get on Social Security, but that is a waiting game. Even if I get on it, it will be for a low amount. If I get a lawyer to help me, it will be for an even less amount. Changes of me getting on it is slim.

I want to write so badly. Whether I’m a good writer or a bad one, I want to share my stories with the world. I fear that I may never get better and this may be the best I ever feel again. That I may never know love or friendship the same way, if I ever know love again. I fear that I won’t get to enjoy life ever again. That I will be trapped in my prison, in the darkness, forgotten by the world. You might think it is great not working and living at home with no one expecting anything from you, but let me tell you, it is Hell.

I want to work again, I want friends again, I want to have intimacy again. I want money and I want to have fun again. I want to be an author. I don’t know how I’m going to have any of those things always feeling unable to do them. It’s not even like mind over matter, it is mind over mind.

I will keep trying and I know I will do great things as a writer, but please know that anything I do, requires much more effort from me to accomplish it. My A to Z Challenge required a lot of effort from me and disabled me.

Again, I am not looking for sympathy, I just want people to know what I’m going through. Most days it is like having a big rock tied to your brain, pressing down on it. I can’t even really describe what it is like. If you know anyone with PCS, or anyone who had it, give them some positive encouragement, they really need it.

I hope that helps someone.

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