Live Blog: Living With Pain: A Survival Guide

Led by Janet Oberholtzer and Robby Lamb, Living With Pain: A Survival Guide was an interactive group discussion on how to incorporate the #wycwyc philosophy when you are dealing with chronic pain or an injury.

Robby and Janet greeted participants by having them mark their pain on a map of the human body for physical pain, while invisible pain (depression, anxiety, etc.) went on a separate poster.

Robby: Hi everyone, how is everyone doing? Is anyone new here? I don’t think anyone is new here.

Janet: Welcome to living with pain, actually, I don’t want to say that because I don’t want anyone to be living with pain.

Robby: What is pain? This is the Webster dictionary definition.

Participants chime in:

Restriction
Exhaustion
I love the range, from mild discomfort to unbearable agony
Cannot control
Awareness issue. A surgeon once described it to me. You can be aware of

Robby: Pain is this thing, it’s not something that is going to go away. It is your body talking to you. There is a difference between pain and suffering. Pain is inevitable, suffering is optional. There is this “Second Arrow” concept, it says the first arrow is the injury and the second arrow is how you deal with it.

Robby: How did we get injured? Was it from bad form, overexertion, compulsive exercise, an accident?

Janet: This is me. My left leg was injured in an accident. I spent four years recovering with ongoing surgeries and spending two years sitting on the couch wishing I had died in the accident.

Robby: That’s my lower back. In high school, a linebacker slammed me against the wall. Then, in 2007 I was trampled at a concert. On the right is my neck. I have this scar right here (pointing to her neck). This was a sex injury. I had a boyfriend who pulled my hair and I was within 3mm of being a quadriplegic.

Robby: It can be genetic too. Arthritis. Is lymphedema genetic? Yeah, lymphedema. We are not competing for who has the worst injury. This is a way to open the dialogue.

From a participant: I tore my ACL and at 240 pounds and had surgery to repair it. Went through various infections, over 20 years and this is surgery number 16. Another invisible injury, put divorce on there. I’m four weeks post op today! I’ve gotten a lot better at it. A lot better at surgeries.

Janet: To me, pain is noise in my head. Waking up and telling my husband its quiet right now.

From participants:

A few ACL surgeries. Just had my third surgery a year ago. Healing on this one is okay. I have husband with severe rheumatoid arthritis. Being on outside having a lot of surgeries, but also seeing a husband with physical job in a lot of pain.
I’m not in pain right now, but I injured my back. People think, “Oh, you get to go for a massage.” But it’s not like that at all. I’m basically naked and they are pushing in my organs. I get relief, but it’s not a fun massage. Everything I do is preventing it [pain] from happening again, or reinjuring myself.
Pain is restrictive.

Robby: Who has a fear of re-injury?

From a participant: The stress of all the stuff you can’t do. All the races I signed up for that I can’t do and ate the race fees. I signed up for Disney to do my first full before I turned 50 and I deferred. I didn’t even bother signing up this year.

Robby: I’m putting FOMO (fear of missing out) up here too. 7 Stages of grief, really apply here. Saying to yourself, “Oh I’m not really injured.” Then anger and depression.

Janet: When I went to my counselor, she said, “You’re going to have to grieve.” No one died in the accident, but part of ourselves die with injuries and that affects goals and dreams in the future.

Robby: These don’t go in any order. You can jump around and repeat them.

From participants:

For me, if I say I can’t do something people think, “You’re lazy. You’re not trying.” But it’s knowing your own limits.
The pressure to get well is huge. People may think, “Why aren’t you better yet?” I’m always happy to talk about my knee, but it’s hard because people don’t understand.

Robby: It’s [pain] chronic and pervasive. For one, it’s hard to deal with this invisible stuff. And then you have people saying to you, “If you take this supplement it will fix everything.”

Janet: People that are like “oh you’re fine”. My injury you can see, but Robby’s isn’t outwardly visible.

Robby and Janet introduced 7 steps to living with pain. The first one was “Honor the Injury/Pain”

Janet: Don’t honor our pain. As a society, we are very “no pain, no gain.” Listen to your pain is the best advice I ever got from my doctor.

From participants:

The opposite can hurt too. Avoidance by telling yourself, “I can’t do that because I’m injured.”
Happy medium is so hard to find.

Robby: Second in our survival plan is to forgive the injury. If you are in opposition of your injury that prevents you from coming up with the next step of the plan.

From participants:

Yeah, we can’t fix these things.
I negotiate. I say to myself, “Ok, you have a trip coming up. We are going to rest now and when we get home there will be more rest so don’t land me in the ER.”
That is compassion and care.

Robby: Fighting against injury takes a lot of energy.

Janet: Come up with a plan (#3). What are you going to do now? I tried to get back to running like I did before, and I got reinjured. You have to be real with yourself. So my plan was, I can’t run 5 miles like I did before, but I can walk 5 minutes. You constantly have to look for, “What can I do with my beat up body?”

From a participant: Doesn’t that make you feel worse, because it’s all you can do? I spent a year and a half working up to 10Ks and there was a point where the pain built up so bad and I stopped. I dealt with not being able to run, but I still wanted to eat the way I did when I was running, so I gained weight.

Janet: But you have to stop and say to yourself you are doing what you can. I get sick of the more and better mentality.

Robby: It doesn’t matter how long the race is. Sometimes it’s the small things. Sometimes it’s the big picture. People get bogged down in their pain when they don’t look at the big picture. This emotional thing is the hardest part of the pain. Working on this will put your pain in perspective. Either way you will be inundated or overjoyed with it.

Janet: When it [pain/injury] was dictating my life, I wanted to lay on the couch and drink a bottle of wine every night.

From participants:

It messes with our goals. I had these goals and I’ve already eaten many race fees because I keep saying to myself, “Surely in a year I’ll be better.”
The body is a mystery, it doesn’t always respond.

Janet: I think you set more general goals. Each day I want to move or do my 3x a week physical therapy.

Robby: Or not pee my pants.

From participants:

Not wake up with a swollen knee. I was diagnosed with arthritic knee at 35 last year.
How do you tell the difference between what you need to do and what you can do?
I had a doctor say, “I know you know your body, but I know my job.” Well, I’ve had my body longer than you’ve had your job.

The fourth step in Robby and Janet’s survival guide was “Work with your doctor”.

Robby: Be your best own advocate. Do your research. Talk to people. I talked to people with similar injuries and asked them, “What were you doing 2 years out?” Also, I asked my doctor, “What are patients with similar injuries doing? What is working for them?”

Robby: Do we need a stretch break?

Everyone gets up to stretch and move around.

Robby: Medical professionals will tell you they know better than you know your body.

From participants:

And that’s when you find a new doctor.
It’s ok to be a pain in the ass with your doctor. I’ve done the research and ask questions.
Learn anatomy.
Biology is going to be your friend.

Robby: I keep a book of all my records.

From participants:

Holding onto all your records is so huge. I’ve collected all the old reports back to 1992. Unfortunately they don’t look at the past, they only look at what is going on right now. This is a narrative. Finally, I shoved it in my doctor’s face and said can you just read this for me?
In my case, my surgeon was the very best for hip replacement. But he only looks at bone and he damaged two muscles that will not get better. Physical therapists are your best friends.
Massage therapists too.
Work with your medical team. Doctors, therapists, even people who take you to the appointments. Even the secretaries. I give flowers to the secretaries in my doctor’s office on administrative professionals’ day.

Janet: Work backwards from your goal. I couldn’t have 5k goal, because I didn’t know if I could walk again. I didn’t know what the end result would be. We all know you want to be as healthy as can be. If signing up for a race motivates you, that’s good, but I kind of think sometimes it does the opposite. If it doesn’t go as planned, there is disappointment. Always refine your goals. If you can or can’t do something, you can tack on or away from it. When you close your eyes, ask yourself, “What is the life you want to live with your pain?” Your injury may always be there. My doctors have some input into it, but ultimately it’s me.

Janet: Involve your support system (#5) even though sometimes they are going to say something that ticks you off. At times I was so vulnerable or hurt, I cut those people out. But over time I realized they want the best for me, they just don’t know what to say. Even my husband, as kind and caring as he is, sometimes he would say something I took him not understanding. When I’m 95 and looking back, how am I going to wish I loved my life?

From participants:

How do you actualize this?
My husband fly fishes, which is an active sport, has 100 pounds to lose. He needs both knees replaced and had rheumatoid arthritis. His family is convinced if he loses weight his rheumatoid arthritis will go away. They are convinced he needs gastric bypass.
That can be a really negative voice.
Where do you involve your support system vs cut them out?
It doesn’t hurt to gather information.
I can’t imagine the place your husband must be in. And you people with back issues – you are warriors. But someone like your husband – your world is so small, and it’s hard to get yourself out of that. Do what you can to present other information, but do it in a nonjudgmental way.
There are other options. Losing 100 pounds is not going to make rheumatoid arthritis go away. It is a bunch of things. But when I lost weight, the chronic inflammation was still there.

Janet: Tell them [supporters] I appreciate you can help. What specifically can you do? Go to the next appointment. Tangible things they can do to help.

From a participant: I’ve had WLS and it didn’t make me a normal size but it did help a bit with lymphedema. My boyfriend said, “Isn’t there a warranty?” People tell me all the time to get liposuction, but you can just suck it out! It [lymphedema] is progressive, it will come back.

The sixth step in the plan is “Do what you can”.

Janet: You know, I think that’s what key. I really like the quote from Roosevelt, “Do what you can, with what you have, where you are.”

Robby: I’d like to add another “WYC” (wick) in there – why you can. The why is really important. Why can I do this? Because it’s happening what’s in here (pointing to her heart), because I choose to be bigger than what is in my body. It’s amazing to look at you and say “you are enough”, you are enough, you are all enough. You are the one living in your body.

Janet: Striving to get better; I hate inspirational stuff on social media. What’s wrong with me yesterday?

From a participant: But if I am eating too much, sitting on the couch not exercising, I’m going to kill myself.

Janet: Look at the future and say, “What kind of life do I want to have?”

Robby: Your recovery doesn’t have to happen in a day. Tiny parts adds up.

Janet: Sometimes it’s not what I did, but did I do as much as I can today? Not did I do more yesterday?

Robby: The enough part is not the physical action, its emotional and mental work.

Janet: I met an 84 year old woman that went to Ireland with her sister because she always wanted to go to Ireland. That was motivation to me. I want to be able to travel when I am 84 years old. The whole enough thing is, yes, I am enough today.

From a participant: Today, I just have to be like I was yesterday; some days you can’t. Those are the hard ones. When you can’t focus on meeting the goal; just being able to sustain where you are. Five minutes on bike is enough, even when you drove all the way to the gym. Little steps keep adding up.

The final step is “Reclaim your life”.

Janet: There is beauty in every day. Find just something in each day. Something you ate. Music you heard. Seeing a friend. When our five senses are engaged in life, it gives us a level of fulfillment. Every day write down something you are thankful for.

Robby: Every day my body is here with me saying ok we get another day. For me that is the best thing we can strive for – our body is here for us. If we don’t give up on our body our body won’t give up on us.

Janet: There were days they didn’t even know I would live.

Robby: Anyone have depression?

Nods in the room

Robby: What about suicide? Anyone consider it?

From a participant: Back in my teens.

Janet: I grew up in sheltered religious community. You may be changing in a religious view at the same time. Make sure you examine your world views and check if they are still aligned with your thoughts.

Robby: I really found Buddhism. A concept “Mara” represents all bad shit in the world. Sitting there with the negative.

Robby: If there is life after injury, raise your hand.

Participants raise hands

Robby: Raise your hand if you’re fighting.

Participants raise hands

From participants:

It’s easy to succumb. To say, “Fuck it we’ll stay in bed.”
There are some days that is a good option.

Janet: There is an Annie Dillard quote. It says, “How you spend your days is how you live your life.”

Robby: You may have a beat up body. You cannot change that, but what can I change? What can I control?

Robby: Raise your hand if you love someone in the room – even if it’s yourself. See the people around you, this is what is so great about Fitbloggin. There is someone that wants to listen to your story, sometimes offer advice.

Janet: Find reasons to laugh and love. On the days you are doubting yourself, find something.

From a participant: One of my big steps happened on Fitbloggin’ page, when someone organized the brew crawl, I said, “I can’t do all of those, but I want to do one.”

Robby: It’s important to speak up when you need help. People aren’t malicious, but they aren’t in tune with what you need. After my surgery, people stopped inviting me out. There are ways to involve yourself and speak up for yourself. I went to the bootcamp. I plan to go to Zumba. With cane if I have to. Honor your injury. Number 1 – honor your injury.

From a participant: Group hug – I’m having my first Fitbloggin’ cry.

Robby: Pain isn’t always easy to talk about but it’s cathartic.

This session was captured by Emily of Big Life, Little Blog. You can find her on instagram and Twitter: @emtucky