"How are you feeling?"-- What a loaded question for someone with PCS.
I always get confused when someone outside my concussion safety net asks this question. To the outside world, I look like a relatively functional adult woman. But that's because all of my symptoms and struggles are happening on the inside and are invisible to others. Being truthful to this question, "I feel like garbage, but thanks for asking!" and people either find it unbelievable that after all this time and "how good I look" that I could feel so terrible... OR... an onslaught of guarded pity, that basically functions as "Oh dear, that's awful." Not telling the truth, trying to avoid these two undesired consequences, leads to something like, "I'm fine. I feel better than I did a few months ago." Yet this puts me at risk of someone thinking I'm back to my "normal" self. This will lead to expectations and demands that the post concussion me, can not currently meet. (And some soul searching that I realize I can't meet those expections of the old me, and then the scary gloom and doom of what if? What if I never am as good as I was...) But I digress..
However, I find answering this question equally troublesome with those closest to me. On the rough days, being honest means I am normally pushing someone away. For example, when asked today if I wanted to go out to dinner, I responded "how about Saturday? I think having so many drs appts this week has worn me out." Taken a step further Geoff responded, "Well you will be babysitting tomorrow, and then have vision therapy on Saturday, so lets see how you are feeling first before we make any plans." (Insert the fact that I am EXTREMELY blessed to have such honest and genuine support, as this was a sincere statement.)
Its hard to admit that my PCS controls a lot of the "normal life" that I used to enjoy. What's harder, is knowing that it effects someone else's life so much. The opportunities other people miss out on because my brain can't handle the overload at that time. I hate that other people have to suffer right along with me, even though their brain is healthy. This leads me to feel guilty a lot of the time. I know all the people in my life are willingly making these sacrifices because they love me and care for me. However, it doesn't make me feel any less guilty.
Back to what I was saying, (Ughh...did I mention PCS makes you scatterbrained and somewhat ADHD? lol) Even with those closest to me, I struggle to tell the truth sometimes whether good or bad, in regards to my symptoms. If I'm feeling crappy, which is pretty frequent any given day after 3pm, my honest answer would be "I'm exhausted, my head hurts and I feel disoriented." Yet, who wants to listen to that all the time? Patience runs thin for a Debbie Downer. However, if I say things are good or I feel closer to normal, again comes the possiblity that people are going to expect me to be able to do things as if there never was a car accident. Which again sets me up for failure, brain pain, and the always on my mind question of "Will I ever be able to do said thing, just as good as I used to, without feeling so awful?"
So the long and short, is that my PCS symptoms fluctuate based on exertion level, time of day, amount of sleep the night before, how noisy the environment is, if their is a bright light on somewhere, whether I'm hot or cold, how much stress I'm currently under.... the list goes on.
If this comes across as a Debbie Downer post, I apologize. Its just more of a realization I came to after my conversation about dinner out haha.