I wish I could send this post and article to my HR and coworkers.
I fought as hard as I could in the years following the injury. I’m stuck. What I have now is what I have although I might improve slightly.
It was never easy. Even when I was doing hard things, they were an attempt to rehab.
There are days I feel more energetic and can do more. I notice there is a pattern. If I do more one day, I’ll be more fatigued the next.
That’s one of the major issues at work. Every day it’s a fight against overstimulation and fatigue. Every day is harder. I slept 12-13 hours a day so I could work part time. And I was always exhausted, stressed, and anxious. I never was “who I was before.” Most days, I hid it fairly well. My office is a cave. You’re right. I needed quiet, dim, non stimulating environment. Remember all the tears? And me walking away from meetings? Or getting so frustrated in meetings because I couldn’t keep up or express myself? Think it was easy to work? I couldn’t process the information. It was too much, too fast. Sometimes, I just zoned out. I needed to survive, I wasn’t trying to be rude or unprofessional.
Too many coworkers either didn’t notice or excused it. I know some people were trying to help and didn’t know exactly what I needed. I didn’t know either. And if I’m emotionally, mentally, or physically flooded or exhausted, I won’t be able to tell you. I’ll walk away or break down. If I get there, take me somewhere quiet. And know if I’m emotionally melting down, “processing” won’t work. It’s more emotional stimulation. Just sit with me quietly or leave me alone. I figured that out with the help of my cognitive therapist. I won’t be able to ask at that point. You have to recognize it and help.
When I worked part time, I slept 12-13 hours a day. Think about it. What was my life? I never had the energy to cook. I lived off oatmeal, maltomeal, cereal, delivery, sandwiches, salads, or whatever microwaveable meals I had. I never had the brain energy to cook, either. It was too hard to manage anything involving multiple steps. I barely kept my house clean enough to be sanitary. My day: work, sleep, warm up dinner, take care of animals- let ferrets play, sleep. Repeat. Some days, I made myself get some exercise. Short runs, that people critize me taking. After all, if I can do that, I can work. It can’t be that bad. Running was sanity. Weekends, I slept and usually shopped and tried to do chores. Usually I got back enough energy to at least show up to work the following week.
Now add in seizures and migraines. And no longer being able to drive. Still think it’s easy? Still think I’m faking?
Walk a week in my shoes. Or even a day. Deal with the sensory stimulation of normal life being like living in a rock concert 24/7. Earplugs, sunglasses, hats can only do so much. Know why I cringe at a sudden noise or loud voice? It physically hurts! It confuses me!
Since I’ve been off work, my diet has improved. Im still as disorganized as ever but my house is cleaner. I sleep only 10 hours a day. Maybe 11 if I was really busy. I can actually do the cognitive improvement exercises every day when before I might have managed them 2 days a week. Things are better.
I love working with veterans. I wish I could do my job like before. Or at least in some meaningful way that contributes. I tried.