Monthly Archives: April 2020

3 Ply Toilet Paper- It’s a Thing

Well hello! It’s been a while, I know. This may be a bit lengthy, so hang in there with me?

The occupational therapist I was seeing at a different facility than all my other therapy/ neuro needs are handled, was not a good match for me. I felt like I was dealing with the school secretary in Ferris Buellers Day Off.

Upon entering the waiting room, it’s a TBI patient’s nightmare. Florescent lighting everywhere, it’s loud and there’s nowhere to self-isolate, seating is cramped, it’s dingy and one of the most overstimulating environments I could put myself into, save for the grocery store at 5PM on a Friday night. As soon as I’d walk through the door, I felt my anxiety level shoot through the roof. The staff was completely unengaging, indifferent. Most importantly, it just did not feel like a place of healing.

The worst part though, was the therapist herself. She was nice but did not get what I was dealing with. She didn’t know how to connect with me or engage me, which for me, is crucial to my success. She said even when I have headaches, I need to work through it to try and complete some of the activities she gave me. This even after I explained that they can quickly escalate to migraines. If it was just a matter of a poor match with the therapist, I’d have said something and either chose someone else or discussed my concerns with her (I’m not shy). But the combination of that and the horrid environment were enough. Who you choose to get you through a traumatic, life changing event like this matters. It MATTERS. Why? Glad you asked.

In our second to last appointment, I again asked about school in the fall. I needed to plan, to give the school an answer, etc. I wanted to know what I was looking at down the road. I made it very clear school was my biggest motivator. She told me that “perhaps I should also consider thinking about other things that bring me the type of joy nursing does” in case that is not possible. I was crushed. This was three appointments in. I left in tears, heartbroken and feeling really lost for several weeks. It impacted my mental health and my ability to see past where I was at.  I’ll come back to this.

The physical therapist I’m seeing gets it. He knows what motivates me, how far to push me, keeps it fun but on point. It’s a fine balance and not every healthcare professional possess it. It doesn’t mean they are bad at what they do, but for rehabilitation it makes a big difference in how you feel about your appointments and progress. The new speech therapist is no different. I look forward to her appointments and they fly by quickly. It’s a joint effort. She understands what is important to me but keeps things honest and helps me set realistic expectations.

At the end of my appointment with the speech therapist I told her about my previous discussion with the one I had left and asked for her input. She asked me if I had had consistent, frequent speech/ occupational therapy over the course of weeks. I said no. My first one left the facility and the second- was not a good match for the reasons mentioned above. She said it would be unprofessional at this point to make any kind of judgement about that (good or bad) without seeing results after about 10 weeks of consistent therapy work. It was not impossible, but she needs to see what kind of progress I make, how my brain adapts etc. While it doesn’t change the outcome, it certainly makes more sense to me. How would the other person have known two appointments in that things might be so grim? She was also compassionate. She gets how important my goals are to me and how much we’ve sacrificed for me to get where I am. I don’t give up easily. She asked what I like to do, my interests etc. My activities incorporate these things which makes it easier to do at home between appointments.

So over the next several weeks into mid-May, I’ll have therapy (speech/ physical) a total of four times a week. At some point, occupational therapy will be added in. I’m doing activities at home, even asking family to help me with my brain exercises to keep it interesting. I want to get as far as I can by then to see what kind of progress I can make and what it means moving forward.

My balance is improving. I still veer a little left when I’m walking and look left and my depth perception is not the best so driving is still a no go for everyone’s safety. No one needs Large Marge at the wheel. I’m working on coordination and other physical activities to help my affected left side.

My thought process is slow. Word recall can be really challenging. Following recipes is difficult. I misread instructions and often have to read steps multiple times. It’s a good exercise though. My short-term memory is VERY rusty so at times I’ll forget my phone number or date of birth for hot minute. It certainly warrants some strange looks at my appointments or at the store.

Being overstimulated is one of my biggest challenges. Put me at a store with lots of people, noises, chatter, announcements, music, etc and I last about two minutes. Multiple conversations at once, talk on the radio while someone else is talking to me- puts me on edge (sometimes over that edge) quickly. My speech therapist is helping me work through those things. I’m reading a book called Trauma-Sensitive Mindfulness. Every time I get a migraine, fear creeps up that it might be another stroke. Nausea can have the same effect. I wait and nothing happens but the fear is there. I’ll report back on the book when I finish but so far it’s been very insightful. Incorporating this with some meditation to help my brain tune out what should be background noise may help. Right now, everything fights to be heard at once. I can’t shove it to the side. My brain doesn’t know how to do that. It’s like being in a crowded room trying to hear everyone at once. I want to sit on the floor, cover my ears, close my eyes and escape. I can’t.

Last night my family and I all met virtually online. We talked about toilet paper and the current shortages everywhere. As you can imagine, poop jokes and humor ensued. It’s what we’ve all done best at our lowest moments- still maintain sanity through humor. My brother mentioned 3 ply toilet paper to which we all questioned what that meant. Does that mean there’s a four ply? Do you only use one square at a time? Is this rationing friendly? He used the term “executive toilet paper”. I won’t go into some of the other jokes that came out of that.

Social distancing has not helped but is necessary. I’m so thankful that Pat (my husband) keeps me laughing, even in the dark moments when he catches my tears of uncertainty.  Having a Portal for our TV (Facebook device), FaceTime, and social media have helped me stay connected with family and friends. I’m grateful. They’ve listened to me vent all of this and offered unconditional support every time. It’s been a wild ride, and often a painful one. I would not wish it on anyone. But having the right medical team helping me navigate the maze of uncertainty helps me maintain my hope and my drive to keep moving forward. I can still see nursing off in the distance, I just want to get a little closer. It’s killing me to have a medical license and not be able to help on the front lines. I work well under pressure and want to help. I realize the only way I’ll get there is to focus on rehabbing my brain.

Today I received my confirmation of my placement in the nursing program for this coming fall. I’m holding on tight to that.