Coming back

Hello friends. Hello anyone who reads this blog.

It was a tough summer. My fear was so intense I considered going to an emergency room in Chicago. I would wake up in the morning afraid to leave my bed for fear of pain.

But months passed. I started Zoloft. The fear calmed. I used what I learned at the program to address my pain from many angles. I made progress. I am doing much better now.

I go for frequent hour-long walks. I occasionally go out to eat at a restaurant. I can watch and play with my daughter for a couple hours a day. I am less rigid, less afraid of anxiety and pain.

It took a lot of work and especially education to get here. But I now feel I know what is happening to cause my pain and how to retrain my nervous system to cause it less, to allow me to do more.

My aims are now: 1) To continue to improve; 2) To share what I have learned over the past 7 years with others stuck in pain.

But for now, I’m just saying hello again.

What felt like the end wasn’t, and I wanted to share that with you.

Day Twenty-Four

Things are feeling less dire, more hopeful today.

I stopped the program except for seeing my psychologist. Our meeting today completely different from yesterday. I was calmer, she was calmer. I felt heard and treated with respect. I think that my royal, sobbing freak out yesterday scared my psychologist and doctor for some reason, and their response was to defend the program and take me away from the other people. Maybe they have had dangerous patients in the past. I’m not sure. But I feel ready to forgive today.

And I had a lovely lunch on the lawn with my friends in the program.

The traumatic fear and intense sensitivity to pain in my right knee is coming and going. But even within this massive flare-up and traumatic fear, within what I think of as the worst that could happen, I am using tools I have learned in this program. Something major has changed in my relationship to avoidance. I am less comfortable avoiding the scary things now. I see how that too causes suffering; it makes me feel that the world is a dangerous place where there are many threats. For example, when I lie down after sitting gets uncomfortable, it makes my nervous system think that sitting is a dangerous thing. It’s only by sitting through the pain and discomfort that I can retrain my nerves. But if I don’t do it very gently, with some sense of safety, calm, and self-compassion, it will overwhelm my nervous system and I’ll panic.

I’m not sure what the right path is, but I am just taking it an hour at a time. I am focusing on what feels good–going outside, a hot shower, a little walk, a swim, gently moving my body while I listen to a TV show. And not thinking too much. My mind is not much help when I am in a nightmarish mood.



Day Twenty-Three

Today I was kicked out of the program.

I am still baffled. I went in to see my psychologist and told her about my severe anxiety from yesterday. I cried a few times. I wanted to process it but she just kept steering me towards leaving. I think they were too scared of my anxiety? Or they didn’t want me to affect the other people in the program? I still don’t understand why. They told me they thought it was best that I left the program, that it wasn’t a program for anxiety but for functionality and they couldn’t really help me. They told me they had to look out for the other people in the program, as if my anxiety was dangerous to them somehow.

My psychologist wouldn’t let me see the other people in the program until I had “calmed down.” I eventually connected with them at lunch and told them what happened, but now I am at home and it’s the middle of the day and I am afraid of being alone. Being dropped from the program feels like the worst thing that could’ve happened. I don’t understand why I couldn’t participate in some way the rest of this week.

I feel disappointed, hurt, and angry–on top of all the fear I was already feeling. I did not know if I was too open about my anxiety, or that if things got too difficult, that they would shut the door on me.

My psychologist agreed to see me tomorrow, but I’m not allowed to participate in anything else.

This feels awful. This was not how I wanted to end the program.

I feel completely alone here now. I will just try to be gentle with myself the rest of this week until I cool off. This is one of the most difficult days of my whole life. I will try to be kind to myself. I have a proven record of success with pacing walking and with the zoo trip with my wife and child, and I have many more tools than when I came into this program. I wasn’t entirely understood, and the program and I both made mistakes, and the way it’s ending is leaving a bad taste in my mouth. But I know there is a way through this, and I will find it.

I will learn from every fall. And I will keep posting every day until I find my way out.

Days Twenty-One and Twenty-Two

Oh wow. I don’t even know how to begin.

Yesterday, Sunday, I was still really scared. Scared of coming back to the program and being expected to do too much. Scared of making my major flare-up a massive flare-up. Tired of avoiding, I took a walk to the park and went for a swim at a public pool, ordered a burrito and ate it sitting in the restaurant. But still really scared, scared of today.

Then today happened. I told people about my weekend, but I didn’t have a one-on-one session with my therapist. Then we went for a shopping trip to the grocery store and I felt so frustrated and angry with everyone encouraging me not to avoid, not to lie down, just giving me these full schedules and not always listening to me about my ability to pace, that I walked to the grocery store, shopped standing up, and walked back home with the OTs and the other patients. Massive pain in my knee, a tremendous amount of fear. I felt like I would rather be dead than feel this.

I have experienced that feeling before, but it’s been a long time since I felt that with the knee pain. Like a year ago. That deadly dread, a feeling that I’m afraid to be alone with. A long time.

I went into the bathroom, lay on the floor, and cried. It felt like everything I have worked so hard for this year–my hard-won 30 minute walks (up from 1 minute!), my gradual returns to standing and sitting, and all the progress I’ve made in this program, like my amazing zoo trip with my wife and baby and my ability to sit for a solid hour–were destroyed in the space of an hour. I felt destitute. Completely alone.

I think what I’m afraid of is going back to the time in my life where my knee pain was so bad that I couldn’t even make it to the bathroom in the middle of the night. I would pee in bottles in my room. That kind of aggressive limitation terrifies me, especially after all the gains I’ve made this year. I am deathly afraid of losing what I have gained. And I don’t know how to recover without being afraid that I will lose it all again.

After the last class of the day, I talked with two friends in the program. They heard me as I talked about my overwhelming fear. One hugged me. We all cried together at one point. I feel so vulnerable. So much pain in my knee right now. But talked to them helped. Being messy and not making sense and just saying whatever was coming up, and being listened to in that situation, felt healing. It made the fear feel not quite so menacing.

So that was my day. I am afraid to be alone tonight. My knee pain is at a nine out of ten.

But I am still here, supported by the kindness and generosity of others.

I am still here.


Day Twenty

Today was Saturday, a day off. But it was a major day.

I spent much of the day feeling scared. This program is so much sitting for me, and I have been trying to put on a brave face, look at the positive in every situation, and try my hardest to pace sitting. But there is a part of me that I haven’t really given a voice to. The part that is just screaming, This is too much! This hurts! The messy, ugly, scared part. That part is afraid of being judged for being what it is, judged for being just another symptom of my pain-avoidance behavior, so I haven’t given full voice to it. And I have worked so hard this week and all through the program to sit, to participate. Today it hit me, and I broke down at about 7pm and cried for a couple of hours while I talked to my wife. She helped me see the situation with some more clarity.

I want to just leave the program. But I think I will go in and tell my therapist exactly what’s happening. Messy, unwise, whatever. I need to give my truth a voice and stop judging it for being what it is. The program feels like too much, I am sitting too much too soon and it’s a lot of activity, and now I am really hurting and sitting scares me and walking scares me. I am in a big flare-up. Yes, I am not going to deny that.


Day Nineteen

Today was a bit of a rollercoaster.

During relaxation this morning, I imagined myself on a beach with my wife and daughter, playing in the sand and the waves. It made me cry. And then a new person in the program, Helen (name changed for privacy), came up afterwards and told me she had trouble during the parts of the relaxation when the woman guiding us stopped talking. I gave her some advice about how to approach those–mainly that she could relax into them, and that whatever was happening, even if her mind racing, it was really okay.

Then I went into the bathroom and sobbed. That moment of kindness to Helen made me realize how hard I have been on myself this week. Trying to sit to please others, worried that the authorities at the program won’t think I am doing my best, and struggling to keep my gains and add to them. All the tension poured out of me in a wave of self-compassion.

Which led to our minigolf outing. It began in difficulty, with intense knee pain, but as I gently leaned into it, the pain got easier and softened up, and by the last hole, I felt confident standing and taking my time to hit the ball. Then my three closest friends at the program and I went to lunch at Pret a Manger. I walked there, stood in line and paid for my food standing, and sat for lunch and laughed and talked without much difficulty. An unthinkable thing three weeks ago. It was a similar empowered, painless place that I accessed at the zoo with my family.

The afternoon was hard, and I spent most of it lying down–I still feel like I’m being judged for lying down, and that makes me scared and angry and makes me think about leaving the program–but I did have some real successes today, remarkable also because I went into today in what I used to think of as major flare-up land, lots of sitting pain, a state that would’ve made me feverishly avoid sitting for a few days. Maybe my limits are further than I think.

I still feel stress tonight, worry about being expected to sit more than I’m able next week, but I have a whole weekend to recuperate, and some successes to be proud of.

Week 3 complete. Way to go, Jake.


Day Eighteen

Today, and lately, I have been feeling tense.

Sitting is feeling much more difficult this week. I am worried about losing my gains, about going home and having to pace again from a worse-off place than when I started the program. I am tired of being in offices where people are telling me or expecting me or needing me to sit. I want to be able to pace sitting in a way where if I’m going to sit this hour, the rest of the day no one’s telling me that I should be sitting now. Lots of the parts of the program are wonderful, but this increased pain and tension in sitting feels not fun. Especially after how wonderful sitting was feeling last week.

But I’m not having panic attacks this week. That’s a gain.

And this morning I had a great walk on the treadmill that I did not think I was ready for, and a good moment in sitting where I moved through pain and anxiety to a calmer, low-pain place just by stopping to check in and feel the subtle sensations of slowly moving my pelvis.

I want to know if this is OK. Is it safe? This place of uncertainty, especially when there is pain and tension, is scary. But in all likelihood I will be in this place again. I will be pushed again like I am here. Now is my opportunity to see if I can find ease in this place–or if not ease, at least not a total meltdown and withdrawal.

Tomorrow is mini-golf! Please be fun.


Day Seventeen

Today was a little rough. But only a little.

I haven’t had a panic attack since last week. That feels great.

I find myself getting impatient with being told what to do, reminded that I should stop lying down so much, reminded to get my cushion so I can sit on it. I know! Just let me do it. You’ve given me the pieces of the puzzle I was missing, and now I know how to do this stuff on my own. It feels like I was given a racecar and they taught me how to drive it, and now I’m ready to try, but they’re like, wait, we need to keep teaching you how to drive! You’re not doing it right! Do it this way! They don’t recognize that I have a lot of experience driving cars. I know where the gas and the brakes are, I know when to speed up and slow down. Let me drive already!

I don’t think that metaphor makes perfect sense. I don’t know.

I am leaving more space for the future not to be decided by how I feel now, by this flare-up or this panic. I used to be so sure that a pain flare-up was a backslide, that it would take a while to recover from, that it meant my chronic pain was getting worse. Now I’m not so sure. And in that space, there is more room for other things to happen, for pain and difficult emotion to shift faster than I think it can. That feels major.

On a lighter note, Felix, the relaxation specialist, asked us today in his heavy Russian accent: “What will win!? Power of mind or willpower!? Tell me! You! What will win? You! What will win?”

We were all stumped. I don’t even think that’s an actual question.


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.┬áThen 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.