Week 6 - things I cannot

I’m going to try to simplify this. Before my surgery, I set this imaginary timeline that this would be the week that I felt like I would be back to normal and back to work. I told my coworkers this as well. I thought that if I had this mentality, I would manifest a quick recovery.

I’m not back to work. I cannot watch my son independently.

Parenting reality:

• Even after lifting restrictions are technically gone, very minor physical activity causes significant problems for me, and I have not graduated to the point where I am freely lifting and taking care of my son. (27 lbs)

What I can do without symptoms:

• Pull him up from a seated position

• Move him around from the floor

• Stand while he’s holding my hands; he can jump or dance with me standing still (briefly)

• I can get him dressed seated; I can change his diaper seated

• I can read him 3 to 4 books maximum, depending on the complexity; sometimes two

• Depending on his energy level, I can watch or monitor him independently for 30 minutes to an hour in a safe space if he does not require any lifting

• I can cook for him

• I can share a meal with him on a picnic blanket

• I could monitor and watch him while he’s eating in his high chair

• I can ask him to climb onto my lap and sit on the couch or on the floor or wherever when he wants physical connection

What I cannot do:

• When he jumps or pulls me around to run, it jostles my head. I get a severe headache

• If I’m visually tracking him around the room, I get very dizzy as he runs back-and-forth.

• If I’m with him and the environment is overstimulating; music/loud toys/ him yelling-- the amount of time I could spend with him individually is significantly shorter. The maximum amount of time I can watch him is 45 minutes before my brain shuts down.

• Holding his suspended weight such as holding his hands while he lays backwards, catching him if he lunges away, or fast weight shifts causes fairly significant pain and pressure in my head

• I’m not able to hold him while standing, I am not able to put him in his highchair, I am not able to put him in his bed, I cannot put him in his car seat

• I am not mentally comfortable with safety things such as straping him securely his car seat independently, strapping him into his stroller, I do not feel comfortable being alone with him in a bath or in water. Nothing has happened, but I am afraid that I may do something incorrectly, or I might forget, or he might jump out, and I will not be able to catch him.

There are many more things, but of course I cannot think of them right now. Sitting with this reality is very tough for me. Even more than I want to go back to work, I wanna be the mother of my child. I want to feel safe around him. This has been a long time and I feel disappointed, frustrated. I am also so sad that I'm somewhat missing this time with him and, frankly, not being able to be the parent I want to be to my child. I can feel my husband is getting frustrated too.

There are other ongoing problems that are concurrently happening as well. These are keeping me from returning to work.

• I am struggling to read, both static text and screens. Screens are worse, especially if they scroll. I will get fatigued reading one to two static/paper pages.

• I cannot focus on conversation for more than an hour. I get incredibly fatigued. Especially if the conversation is fast or has new information that I need to process.

• I cannot handle doing multiple tasks or hearing multiple people talking at the same time. I’m not able to filter out information. I get incredibly fatigued in these situations and it doesn’t take long for me to feel overwhelmed.

• I do not think I’m back to my baseline as far as cognition, word finding, or pace of speech. These things are improving, and I noticed a significant change than where I was earlier, but it’s still there.

• There’s also a change that only up until now I’m starting to hear people talk about. It’s that true TBI phenomenon. The lack of a filter. I am normally a quiet and reserved person. I like to listen. My mother-in-law brought up that I’m so much more talkative and relaxed. My husband didn’t bring it up as positively. I asked him if I seemed like I was intoxicated. He laughed and said not really. There’s certainly a lack of a filter. I’m not sure where I’m at with this. It’s not something I notice. This worries me professionally. I’m also uncertain if this will go away or if this is a permanent change.

• I’m still unable to type efficiently, although this is getting better; I can do one or two words at a time instead of never hitting the right keys. I rely heavily on speech-to-text.

• I am not able to go on a walk by myself. I tried this two days ago. It is summer and warm where I'm living right now; that day it was 75F°. This day was not an exceptionally hot day for us. I went for a walk by myself for about two blocks. I’m not sure what caused it, if it was the heat, noise, or the stress of cars going by and me taking in all the sensory information, I got incredibly dizzy and felt like I needed to sit down and I also got disoriented.

• When I get a ride to my appointments, whether it’s medical transportation or Uber, I am mentally taxed by this simple activity. I'm not sure if it is the talking of the driver, the music in the car, the movement of the car, or just the discomfort of the environment. This never would have bothered me in the past, but now it is exhausting. I have a lot of appointments now with the brain rehab, and at the end of any therapy day I am especially exhausted, and then I go home to my toddler. I feel like healing is unachievable.

The last few days have been hard. I have not hit the imaginary timeline I set for myself. Obviously, this was a bad idea, but I am feeling that sadness and disappointment. I do see the progress, and I do think the therapy is incredibly helpful, but I’m grieving.