LIFE Program Day 2

Day 2 Began more smoothly than the first day, of course.

Rich dropped me off at the door and I made my way down the long hallway. Today, though, I used my diaphragmatic breathing skills to focus myself as I walked. Once I reached the office, I went straight back to my “home base” room and set everything down on my table. I remembered that K, my SLP told me that there was a paper punch in the room that I could use to keep my papers together.

Shortly after I’d punched yesterday’s paperwork, C and A came in to do my OT work. They welcomed me with happy greetings, and we got started right away with my journal reports.

I shared my reflections with them, discussing what I’d learned yesterday, the reservations I had, what my coping mechanisms were, whether I felt they were good or bad, and if I would like to change the, and I listed my strengths.

During the discussion, I mentioned how the psych component ties into recovery, and specifically some of the events from my past. I mentioned that I don’t see how the death component ties in since I am not afraid of death and don’t get emotional about it. I understand that it is simply a part of life; A explained that it may not be the death thing, and she used the pot theory instead.

For instance, when I was younger, maybe something happened in the kitchen which caused me fear, I then told her about about the boys that moved to town and were considered by many to be the “bad kids” (a title that most associate with me as well); and the youngest of the boys had scars all over his back from what was presented to me as an accident. That when they were in their old home (in another state), they were at the table for diner and their mom was carrying a pan of hot fried chicken grease to the table and spilled it on the boy’s back. The scar was horrific to look at, but the scariest thing was that I never believed the story. I believed that the dad (or someone else) had dumped the grease on the boy as an act of abuse. It always stayed with me that someone could do that to a child.

In that memory, I think I may have found one of the reasons for my hypervigilance. I want to protect my kids. I want to keep them safe for everything. I can’t ever stop being careful around them, especially in the kitchen, especially with hot items. Was this the key?

Perhaps.

We will see maybe later, but for now, we know that it is a “piece of the pie.” Another part of this piece is that I felt very unprotected in my childhood. My own mother would not even step in to protect me from my dad, from the bullies at school and in many other ways. In fact, it was my job to protect my sisters. It was up to me to be the strong one. Mom didn’t even believe me when the threats were real, like the snake. So, it all ties together somehow. That’s where the psych component will come in. I hope that she will help me see where the vapor lock happened and my mind sort of locked itself away and caused these symptoms.

Then it was time to do the Sensory Profile work. C handed me the rating scale and described the way we would do the work, and we got started. Not surprising, the results indicated that my nervous system is highly activated.

We then reviewed a Sensory-Motor Preference checklist so that I can reflect on what increases and what decreases my sense of alertness. Initially, when they tried to explain it to me, I told them that I don’t feel as though the items on the list do anything… but as I imagined what each thing would do – whether it would cause me to become more uncomfortable or awake or whether it would make me feel calm, cozy, and sleepy, it helped me distinguish between the two.

We discussed the excitement of my nervous system, we talked about how I am on “high alert” with pretty much everything, and because I wasn’t calming myself down, my nervous system basically said, “No more”, and shuts itself down, thus the varying symptoms I exhibit. We talked about taking what I need. That is not only acceptable, but it is required to make life better for the kids and everyone around me.

that was hard to hear. My whole life, I’ve been taught to be quiet, sit still, don’t touch, don’t be so loud, calm down, stop overreacting, don’t do this, don’t do that, get over here, be nice, be kind, be more like my sister, share, get along, turn the other cheek, don’t take up space, get out of the way, stop being so needy, push through it, get going, suck it up and deal with it. But never in my life was I taught how to deal with it. Never in my life was I given permission to acquire, possess, and wield power to do what I needed to do to survive. And maybe not even to survive but thrive. Until today. A gave me that permission and I’m holding onto it for the rest of the day. Maybe even the rest of my life.

After OT, it was time for PT with my therapist, O. She went over my breathing and asked how my night was. I talked to her about practicing and how I don’t feel its natural yet, but I do appreciate knowing this new way, and I can already see the relaxing benefits of it. then we began working on our Pt work. First, there were exercise that I can do to help regulate myself and then, we tried the weighted vest. She put it on, and I was immediately washed in a sense of safety. I felt secure and safe, and for the first time in a long time, I could feel the ground underneath my feet. O gave me the first activity instructions: stand up from the chair without touching anything. I began the diaphragmatic breathing and then tried to visualize getting out of the chair, but I felt stuck. As in, I couldn’t picture or imagine getting out of the chair without touching anything. I told O, who told me that’s okay. If I need to use the chair once, I could do that and regroup. So I did it, and it felt okay, but not great. I sat back down, and O told me about executing on the exhale. I practiced timing my breath, and finally as able to stand up. I think she caught me using my legs for leverage to push up from that time, so I did it again and focused more on my breath and less on my desire to use the chair. She smiled at me and told me that I could. I repeated the sit to stand exercise three more times and then she gave me the goal of standing, taking a couple of steps, then moving to the table she had placed six cones on. I would then have to place the ring of the same color on the cone, then I would have to return to the chair by stepping backward.

I’m pretty sure I haven’t walked backward since 2016, but if I have, I assure you that I didn’t know I was doing it. I was doubtful this would be possible, but the one thing I know and have told myself over and over since walking in the door is that these people will not try to hurt me. They will not let me hurt myself, and if at all possible, they will catch me if I fall. They don’t want the paperwork from a fall, so there’s that. What’s more, they <em>want me to succeed</em>. That’s why they created this program. Their success is only possible if <em>I </em>succeed. So, they aren’t expecting me to fail. So, I took my three diaphragmatic breaths, visualized a smooth get-up, and I stood up out of that chair without touching anything. Then I smiled and felt all giddy inside, which stimulated my nervous system, {and distracted me} so I gave myself time to re-center by taking a few more breaths and visualizing myself walking to the table and placing the ring on the cone. The first few were awkward because there was a lot of thinking going on, and fear. The fear of walking backward was real, but there was also joy for the things I was doing, and, for the first time in a very long time, I felt the floor. I could feel my feet on the floor, I could feel myself taking steps. It was… bizarre… I was so stoked just learning to move through the process.

• Look at the color of the ring
• Visualize myself putting the ring on the cone while breathing my three diaphragmatic breaths.
• Inhale, exhale
• Stand up from the chair on the exhale {without assistance} This step helped me remember that the chair might be difficult because I used to fall backward when I couldn’t move very well.
• Breathe in, exhale
• Take a step on the exhale.
• Place the ring
• Inhale all the way done, fill my belly.
• Pick up that right foot and move it backward on the exhale
• Fill that belly, then empty and move the left foot.
• Repeat until O says I’m close to the chair.

I still don’t know where I am in space. I don’t know how it feels to know how many steps I am away from something or what size of step I’m even taking. Is this something people even think about anyway? Do people get up out of a chair without touching the chair? Why am I thinking about this now? Why has it never mattered before?

O is looking at me with a big smile and bright eyes. She tells me I did a great job. She tells me its time to do meditation and she will see me tomorrow. It was a bit sad, but I’m good with it because I will see her tomorrow. She tells me E will be in with the wedge and scan. O takes off the weighted vest and I don’t like how it feels. I like the weight of the vest.

E comes in with the wedge and the iPad. She tells me she will put the weighted blanked on and that I will be doing the 10-minute body scan. She puts the blanket on, starts the scan, and closes the door. I listen to the guided meditation. I got to my face, the fell asleep. I think I may have snored.

K came in and asked me if I was ready to go. I asked her if she could hear me snoring, as I thought I fell asleep. She told me how good that was, then assured me she didn’t hear me snoring. We went over to her office to talk about my tired brain.

I knew about the Spoon Theory from my Fibromyalgia diagnosis, but at no time did I realize that I could choose to add spoons into my day. I also didn’t realize that I spend an awful lot of spoons just getting ready to start my day and I don’t usually add them back till evening time. Which isn’t a very good balance. We talked about the Relative Scale of Cognitive Load and how some days I’m filled with #7 Red activities, and I don’t even have a chance to get to a 5 Orange for the whole day. :( K reminded me that I can do some 1 Green activities to try to balance those #7 Red activities out. She also told me it was time for lunch. SLP was quick today.

I went back to my “home base” room to check my phone to see if someone had texted me that they were ready to go to lunch. They were in the parking lot. I thought I might like to try that whole sit-stand thing by myself. {Pretty brave considering I could have fell and then where would I be?}

• Three deep breaths.
• Move on the exhale.
• Stand for a second and breathe.

I did it! I smiled and saw O in the mirror and asked her if she saw it. She asked what and told me she was in her thoughts, so she must’ve missed it. I told her I got out of the chair without touching anything – including my legs. I did it!! She was bright eyed and smiling, “YESSSSS!” She exclaimed. I walked out for lunch as slow as ever but feeling a whole vibe of accomplishment for that little {big} milestone.

Lunch was awful. We had a 20-minute drive to sit in the line for 10 minutes when the person ahead of us made us wait an extra 5 minutes and by that time, we’d noticed a couple fighting and more cars coming in. I was definitely stressed and asked Rich to just take me back to TRP so I could get the last hour done. Nobody complained, but they should have. They were all hungry from their zoo tour and here I was selfishly asking them to skip lunch.

I trekked the hall as slow as usual and went into “home base” to wait for C for the final hour of PT. When she entered the room, she asked about me, how I’d been since our phone conversation. It was a good introduction. We talked about why I know so much and grasp FND.

I was poking holes in the diagnosis. I feel that sometimes people put new names on old things to get buy-in. What I know is that FND used to be called Conversion Disorder, and that doctors believed that people were converting psych issues into physical symptoms. Of course, that is what my brain is doing, which doesn’t help because my inner critic is a total jerk and thinks I should be able to control myself. My inner critic hates me because I’m weak and not strong enough to just “get over it”. That SOB wants me to hate myself for something other people did to me.

But I don’t have a choice.

No FND warrior has a choice. Because if there were a choice in this matter, I would never have had to be stuck in a chair for 16 months, or give up driving, and I sure as heck would stop dropping things, and you can bet your butt I wouldn’t struggle so much to write words on a post like this. We aren’t choosing the symptoms, we don’t get to choose when they happen, and we don’t get a cure or even understanding of what causes them.

It’s the perfect storm.

Anyway, I told C that if I hadn’t been trying to prove the doctor wrong and prove that I could fix this myself because it’s all in my dang head and I’m just weak and imagining all this and… and… Well, I wouldn’t know what I know; and what I know is that I can’t fix this, and I can’t stop it from happening, and I’m not weak, and I’m trying as hard as I can to get well, and this disorder is real and I’m not making it up dang it!!

I’m so thankful for this team of people who have been guiding me through the past two days. They have made this normalized. There is no stigma. This is what it is, and we can do well with it, but we have to work at it, and I have to be okay with failing because we all fail. Its what we do with the failure that matters.

C puts the weighted vest on me and asks me to show her what I did before lunch. I breathe and visualize and stand without touching anything. She smiles big and moves back a little toward the door and we stand there talking for a good little while. She mentions that we’ve been standing there talking and asks if I have just stood somewhere without falling or wobbling in a while. I think, “No. I haven’t. ” When she asks me why I think I’m able to do it now, I explain that I’m able to feel my place. I feel secure and safe. I can feel my feet on the ground. C is smiling big and asks me if I can stand up and walk out of the room and stand in front of the stairs. I tell her what I tell all of them: “I can try. “

• Inhale
• Stand on the exhale
• Inhale fill that belly
• Exhale and move that right foot
• Inhale
• Keep going
• Inhale
• Keep going
• Stop at the stairs
• Notice I’m not perfectly aligned
• Inhale
• Move the right foot on the exhale
• Inhale and move the left foot

She asks me to go up the steps now. Do I take steps at home? Yes, three. Always using the rail, always one foot on the stair at a time then the other foot. No stopping, just get in the house.

C stands by, waiting as I take the breaths. I make a misstep, so I have to begin breathing all over again which is disappointing, but I know that I need to do this in order to be successful, so I do it. Then I go up the stairs without touching anything, because I like a challenge. When I reach the top of the stairs, I notice the feeling. It’s like I’m floating. I don’t like it, and I am afraid. I talk about what I feel, what’s happening inside my body and mind. C asks me if I have always been afraid of heights or if this is new. I tell her that I was an Oak tree climber from way back. This fear of heights is definitely new. She smiles and nods. I’ve been getting a lot of those smiles lately. I take a deep breath and fill my belly. I hold the rails and take the first step, then the second, then the third, and when my second foot hits the floor, I smile and celebrate being on the ground.

C gives me another task, with the cones. She puts one on the landing of the stairs and asks me to climb the steps, pick up the cone and then put it on the stack of cones at the top. I am able to complete this task. It still feels uncomfortable, but I am able to do it. She gives me more tasks like this one and I end up taking the stairs three more times without falling.

At some point, I am at the top of the landing, and I realize I am not breathing, and I am excited. I don’t feel “ready”. So, I acknowledge that sensation and do my breathing. When I get to the ground, I explain what happened, and C told me that what just happened with that realization, my feeling the sensation and understanding of it being my nervous system, and the confidence I had to “turn it down” to where I could function – that is the whole point of the week. That is what this whole week is about, and here it is only Tuesday. I am getting it! I ask her if this is it, why does it take so long? Why couldn’t any other person I’ve been to for help just say to me, “Hey, there is something going on with your nervous system. Here’s how to fix it.” Why does it have to be so difficult and take so long? C tells me that every person is different, it is a difficult concept to grasp for some, some people just aren’t ready to accept this, some people don’t believe in neuroplasticity, some doctors have a difficult time explaining it. There are so many combinations of people and reasons as to why Functional Neurological Disorder is so difficult to diagnose and treat {and live with} it’s really hard to answer that question, “Why did it take so long?” But I’m here, and I’m grasping it, and I am doing so good.

C moves us into another exercise on the steps. I’m thankful to have this opportunity and so very thankful for these people who have put so much time and thought into my treatment.

The final time down, she asks me to walk to the black line. She asks me to give the cones to the other PTs so they can clean them, but I know this walking thing isn’t as easy as the stairs, because it’s a long way, there are new people, this is a hard floor, and there are so many obstacles; plus, she said, “those guys” and one is a man, so I’m afraid that I will have to look and speak to a man. I don’t like that feeling at all, but so far, 100% of the times I’ve done the thing I’ve been uncomfortable doing has brought a feeling of success in the end, so I go.

C tells me what she notices about my walking. I walk like an Etch-A-Sketch. I don’t take diagonals. I walk in lines. Well, I follow lines, I see lines, and lines are very comfortable. There are rules about lines, safety in lines… maybe? I don’t know why I walk in lines. Also, C tells me that I am watching my feet, my steps. She assures me that in this instant, I don’t need to watch my steps. There is no laundry basket, no cats, nothing left out on the floor to trip over, so it is reasonable to walk without looking. She tells me to take three steps with my head up, then look for obstacles. Then she tells me to watch her hand and tell her how many fingers she is holding up. I am able to tell her how many fingers she’s holding up, but my feet won’t move. She tells me to just walk. Walk with purpose. So, I do; and just for fun, I cut a diagonal path to the door at the end; and I smile with delight at myself, because I did it.

C comes back into “home base” and talks to me about the vest. She says my goal is ultimately to be comfortable walking without it.

I think to myself, “That’s scary.”

I understand what she’s saying, but I just got comfortable walking and navigating stairs without the vest. I don’t want her to take it away. She does though. She takes it off and grabs my mug. She takes it to where I can’t see and tells me to walk to the stairs and get it. Now when I say she tells me, here’s how it sounds, “Let’s see if you can walk to the stairs and pick up your water bottle. I think you can do it.” There is a 5 second delay in my brain while I process what she is asking me to do. I see a smile on her face, I remember that her success is my success, and I know {rationally} that she is not going to ask me to do something that isn’t safe. But I don’t know if I can actually do this without that vest. I don’t like the way it feels to just sit in a chair without the vest on. But I can try.

• So I take a deep breath and fill my belly
• I stand up on the exhale and get out of the chair without touching anything.
• I’m still using my arms to stead myself. I still feel out of control. I don’t like it.
• I stop and take a deep breath
• Move that right foot on the exhale
• Stay in my head – think about filling my belly and emptying it.
• I’m at the door now.
• The music is louder
• I hear the PTs in the fishbowl room talking
• Someone comes out of the bathroom, and now I’m stuck
• So I breathe again.
• Big breath in, fill the belly
• Let it out and take a step
• Tears are filling my eyes this is hard because there is too much going on
• But I keep breathing
• I keep taking steps
• I don’t want to fail
• Quitting is not an option
• So I keep going and I grab my water bottle {at this time, I don’t even remember where it was on the steps}
• I turn around
• I keep breathing
• I use my hands to hold myself steady
• I get back to home base
• I grab the arms of the chair and I sit down
• I am safe {and I have my water bottle}

C is standing by the door nodding and smiling. I tell her I did it. She says she knows, and nods, beaming.

That’s it for today. C asks around to see if anyone needs the vest for tomorrow. She allows me to take it home so I can walk the dog with it. I’m excited to try it. She tells me to have a nice evening. I look at her and thank her for the day. Then I tell her I’m going to get up without touching anything and I’m going to breathe; and I do.

C tells me as I walk out the door with my feet firmly attached to the earth, “Walk with purpose”.

And I felt so good walking out of there. Maybe I looked like a robot or a stiff mannequin. I don’t know. What I felt like is a confident woman who could hold space in every hallway and room and can walk out of there with my head up in self-confidence.