Day Sixteen

Today was a good day.

I told my occupational therapist and psychologist that I felt they were pushing me too fast about increasing my sitting tolerance. I told them that I wanted to take the lead on pacing my sitting. And they were very open to that. They heard me and understood me, and I feel much better about pacing sitting now. That was a huge relief. I was so scared about telling them the truth, but when I did it was so easy. Now we’re on the same page. I don’t have to feel like everyone’s breathing down my neck about not lying down.

Our group planned an outing for Friday, as a way to test our pain management skills in a novel setting. On Friday, we’re going mini golfing. So that will be fun.

I’m trying to think of funny, specific details about today to make this post more interesting. I can’t think of any. But yesterday we had a funny nutrition lecture where we learned important skills like:

When you are hungry, go ahead and eat something.

When you are full, that’s a sign you can stop eating.

If you are really hungry, you may want to eat more than usual.

Interesting stuff. Then the nurse leading the lecture showed us a YouTube video of a guy who eats one huge meal a day and does intermittent fasting, and guess what? He’s so healthy. But we may not want to do that.

It keeps on. I don’t know where it’s going or what’s going to land, and that feels fine. Just today, and tomorrow, and the next day. Maybe I will suddenly realize that I haven’t felt pain in a while, that I feel more normal. Maybe getting out of pain will be just as slow and unnoticeable as getting into pain was. Like suddenly I noticed that I was housebound and thinking about pain constantly and avoiding everyone I know and having panic attacks. How did I get there? Hard to say. Maybe the way out will be the same.



Day Fifteen

Today was long. Chair yoga, conditioning, tai chi, functional analysis. Four very active hours. And I managed to sit for two solid hours, one in the morning and one in the afternoon. It felt like a lot. Too much? I don’t know. That’s what my mind is telling me, but it’s been proved wrong a lot in the last week. So I don’t know.

Now, being home, I feel sad. Or scared. Not sure which. The last week has been a roller coaster. Something feels unsettled within me.

I will be kind to myself until it settles.


Days Ten, Eleven, Twelve, Thirteen, and Fourteen

The last five days felt like a strange dream.

I didn’t post because of a visit from my wife and daughter. At first, their coming brought up intense pain and panic, on top of panic I was already feeling about my psychologist, who I felt was pushing me too fast. My first night together with my family was difficult. I was in a lot of pain and stress. I thought it was going to be a rough visit.

But it wasn’t. On my two days off from the program, we went to the zoo and a nature museum. We stayed out for a half-day and then a day. Even considering these trips would have been unthinkable any time in the last year. Yet I did them. I walked, I sat for entire meals (!), I talked and laughed with my wife and daughter, balanced my daughter on my lap as she pointed and guffawed at ducks, turtles, bubbles, monkeys. I spent more time with my daughter than I ever have in her life. And I just kept going. I breezed past limits that have felt fixed and solid for years. Several times, my wife and I looked at each other in amazement.

It feels like a radical shift to use all my tools and strategies for pain not to figure out how to go off alone and feel better, but to help me continue to participate. When I had pain those two days, I kept asking, “How can I move through this?” Rather than moving away from it, as I have always done. If I leave, the pain will go away, but if I stay, and work gently with it, the pain will also go away. No matter what, the pain will pass. I don’t need to completely stop for the pain to stop. That’s huge.

So now I’m not sure where I am. Was this a fluke? How do I keep these gains? I should probably just let it pass. Tomorrow is a new day.



Day Nine

Another day finished. Today was a real challenge.

My psychologist is really focused on my sitting tolerance, and the catastrophizing and avoidance patterns I have around it. I am listening to what everyone says but it’s exhausting. I am getting different suggestions from everyone, and feeling conflicted about how to follow my own sense of the best approach for me while also being open to other peoples’ advice.

I had a panic attack during the last period today.

Last week felt like the honeymoon week. But this week, the sh** is hitting the fan.

It’s so hard when I get angry at my health care providers. I want them to give me reasons to trust them, and sometimes they don’t, and I feel unsafe, and I get angry at them for not making me feel safe, and angry at myself for needing other people to make me feel safe. It’s a big spiral.

I am scared of what I know is happening to me. Of what stress does to a body and mind, of the avoidance and catastrophizing that I know makes it worse but that I can’t help sometimes. I don’t like it when my health care providers point out these obvious but scary things to me.

But today is over. Please God, help me find the right path. I am trying.


Day Eight

Today was–in the middle.

The day started out alright. I loved “Weekend Review,” where we talked about how our weekends went and how we applied (or not) things we learned in the program to our everyday lives. I had a challenging meeting with my new PT. She said some unskillful things and I was already feeling fear. Or I don’t know, did she say some unskillful things? I was just so sensitive by that point in the day: in a flare-up and scared of everything. Of course it was rough. I felt some terror and panic.

This terror is such a strange and familiar thing. Like a heavy blanket pulled over the whole world, making everything threatening: a sensation in my neck, a glass on a table, a jet flying through the clouds, lights on Lake Michigan. This is what I spend a tremendous amount of time and effort trying to avoid. Now it’s back, front and center.

If I let it run wild, it will turn into anger or self-hatred, or both. If I sit still with it, it’s just that heavy blanket.

That was today. I hope I can do this.



Day Seven

Today was rough.

I had no plans, and a flare-up in my neck and knee last night had me feeling fear this morning, and I just ran away from it. Too flared up to leave the apartment, and too bummed out about the flare-up to use my time alone in any useful, empowering ways. These days happen from time to time, but they take me lower than they used to.

Sometimes I can be with the fear or depression or difficult emotion, but sometimes my will to see clearly leaves me and I just mope around, listening to TV and passing the time. And the feeling of avoiding a difficult emotion leaves me very drained.

Then I just want to be more alone so I don’t share this difficulty with anyone else. So I isolate even more.

I can see this process happen so clearly, but sometimes I feel just powerless to avoid it.

I will try to be kind to myself and move on from here. Habits are hard to change.


Day Six

Today I went to Windy City Gyro and ate a gyro–without my wheelchair. It involved standing to wait for the elevator and standing in the elevator, walking seven minutes to the gyro place, standing to order my gyro, and sitting in a chair for twenty-five minutes eating my gyro.

My main goal in doing this was to practice sitting for a while, which is painful and scary. And here’s what I realized: I have gotten used to lying down whenever sitting gets painful, usually after 10 minutes or so. And when I lie down, the pain goes away. So I think that to make the pain go away, I have to lie down. But I realized that if I keep sitting with the pain, the pain will also eventually go away. It will not last, no matter what. This is surprising, because I have the idea that if I keep sitting the pain will increase and increase until it’s unbearable and I have a panic attack. But that’s not what’s been happening. It has been scary to wait with the pain and see this happen, but it’s happened a few times this week, and today it’s a little bit easier.

This is big for me, because the same thing happens with standing, talking, using the computer, being around people, driving, playing with my daughter. I am always stopping to go away and lie down so the pain will go away. But maybe the pain will go away no matter what, even if I don’t leave, even if I continue the activity.

So that’s what I learned today!