Recently I received a phone call late in the evening. It seems someone had found out that I advocate for people living with pain and had come across my contact info.
Our conversation consisted of me listening to a young lady tell me that she could not do anything around the home, that when she moved it caused her pain to increase. So, day in and day out she laid on the couch and watched television. If she moved she hurt more.
Her husband of 10 years had always been her biggest supporter but lately he seemed to be getting more and more frustrated as each day passed. He worked all day to provide for them and then came home and prepared dinner, washed clothes and cleaned around the house.
She admitted that he was tired and that this situation was taking a toll on him to be the only person working outside the home and then coming home to take care of her and their home. What was she to do, if she got up and moved around her pain may increase? She is so afraid to get up off the couch!
As we talked it became clear that she was stuck in the world of “I can’t.” Whenever I would suggest her starting out slowly and getting up each day and work on one task at a time, I would hear, “I can’t. I will hurt more”.
Now, I have lived with pain for 20+ years and I do understand what it is like to live with pain 24/7, 365 days a year. However, here is how I see it–there comes a point in time when you have to decide if you are going to live your life or just exist.
She could not see beyond the pain, she could not see what a huge affect her inability to try was having on her husband. All she could see was that he was not as supportive as he once was and she just could not understand why. She admitted that she felt her marriage was in jeopardy due to what life had become for the two of them. She spoke about how much she loved her husband and she knew he loved her just as much.
“Why is he frustrated with me?” That was the question she kept asking me. The more we talked the more I could hear how afraid she was of losing her marriage. If only she would get up off the couch.
I tried to explain to her that it was totally normal for her husband to be frustrated. After all in his eyes his job is to protect her–to fix whatever life throws their way. But he cannot fix her pain, he cannot take the pain away. He would if he could in a heartbeat, but because he cannot he is left with frustration. He is also frustrated because he sees his wife of 10 years giving up and not trying to fight back and not let the pain win. That beyond anything else must surely be frustrating him the most.
How do I know this? I know this because after many years of living with pain, I saw this in my own life with my own husband. He too was and still is my biggest supporter but at one point in our lives I saw the frustration because I gave up the fight. The way my husband saw it was as long as we fought the battle together we would survive. As long as we climbed each mountain together, we would reach the top. We were, are and will always be partners in life. Part of my fight, was to get up off the couch.
I shared all of this with her, in hopes that she would see her life wasn’t over. She still had so much to give to her husband and marriage. She still had so much to give to herself. Did I get through, I honestly don’t know. I asked that she call me back whenever she needed to talk to someone. I sure hope she does.
You see even though we live our lives with pain, we still have so much left to give to our families and friends. We still have much to accomplish and we can do it all. We only have to see through the pain and once you see through the pain you’re life becomes yours again. You’re life becomes happy, fun and fulfilled again.
So, please get up off the couch!
How? It doesn’t have to be a major activity, start out slow and easy. Pick a task that you can do in stages. For example, make a meal for your family. Need recipe ideas and tips? See TPC’s Comfort Cookin’ blogs and discussion forums (premium membership required).
- Pick something that you can put together quickly and bake. (That way you do not have to stand over the stove but you are still giving your family a homemade meal prepared with love.)
- Activity one: Gather the needed ingredients on your countertop, chop and store in the refrigerator, then relax & rest
- Activity two: Combine the ingredients and place it in the oven to back, relax & rest—set the timer to remind you to take it out on time
- Activity three: Remove the item from the oven and allow it to cool, then set the table, relax & rest
- Activity four: Enjoy the meal with your family; ask for someone to do the dishes for you or with you—take rest breaks as needed.
It is all about pacing. Think about tasks that you can work on in 15 minute intervals, work 15 minutes and rest 15 minutes. You will be very surprised at how much you get accomplished by following this easy step. Please don’t give up the fight, when you give up the fight you are also giving up on those who are you’re biggest supporters.
You can do this. You can take control of your life away from the pain and put it back in your hands. Simply, get up off the couch.
@Walker2005, thank you for sharing. I came to the conclusion many years ago that those in my family that are in denial, do care, they just are frustrated because they feel as if there is not anything they can do to help me. I explain to them that there are many ways they can help.
It can be as simple as a phone call to let me know they are thinking about me or a card in the mail or an email letting me know they have not forgotten I am still here.
My friends that want to hang out know that they are more than welcome to come to my home and hang out. It may not be the beach or a party but for those that truly want to be in my life, it does not matter where we are, as long as we are sharing time together. A couple games of cards or a board game played with lots of laughter. We find ways to have fun and enjoy each other’s company.
Like you I talk to so many who are truly stuck and I find until they are really ready to fight to get their lives back, it can be impossible to get through to them. However that does not stop me from trying to break those walls down.
I want people living with pain to know that there are ways to have a happy, fulfilling life while living with pain. I always tell folks don’t let the pain win, don’t let it rule your life.
What can you say, Teresa, when you’re right, you’re right; and when you’re doing what’s right, like having visitors over for some fun card games and stuff, it’s right. It may not be the active, physical, crazy visits we used to have, but things change,and we must change with it. Disabled does not mean unable. Adapting to limits set by disease and pain doesn’t mean not being able to do anything, it means having fun, enjoying the moments you are given, and working with the limits and around the pain your disease presents. You definitely find out who your true friends are, but if the shoe were on the other foot, wouldn’t you be up for visiting your friend who is living a sedentary life? Wouldn’t you allow them to be sick or hurt?
My friends come by to see what I’ve been up to, they bring food and beer (for themselves). I always joke how my morphine tastes like Bud Light! Lol. And when I can’t do it anymore, I excuse myself, hug my friends and go and lay down. My friends know to either go do stuff or stay and enjoy themselves. I am allowed to live in pain while they’re here. I love it. True friends make you feel comfortable just to be around them, even if it means I’m sleeping in the other room. It took me a while to get used to it this way. Thank God my friends wouldn’t give up on me. I first had to learn to forgive myself. None of it is my fault and my friends know this and allow me to do “what I can when I can!” I wish these type of friends for everyone in pain. Because of them, out in my living room as we speak, laughing and having fun, I can say, “Life goes on!”
Teresa’s right about the victory stories, it’s wonderful to hear them. We all have no choice but to start with baby steps which proves that the hard part is making the choice to take them. Dionetta ( beautiful name BTW) brings up another good point which is placing blame. I really believe it was one of the key reasons I had forgotten who I was and I was dealing with Pain in a very different way than usual. Understandably though, considering that the medical system was blaming me for “faking it” to get drugs and my friends were blaming me by not believing me too. So I was trying to get everyone to believe me and not blame me for what was happening.
I know now that was never going to happen. Everyone who blamed me then is still looking for reasons to blame me now. The Walk only made it worse. But…I no longer look for validation from anyone. I know that my loved ones fear my being sick and are in denial of it, and will be until I die, probably. My friend said the other day, “Do you mean you really can’t travel? But you could take a plane to Florida right? If it was on the beach and you just had to lay there, right?” You can hear it in his words. He doesn’t want to accept the reality. He wants me to be the old me and meet him on the Florida beach and hang out. He fears that we can’t do that anymore. He fears me reminding him of his age and ultimate mortality.
My doctor hasn’t sent me for tests in 3 years. I’m sure he has never looked too far into my disease. He admitted it was over his head but by his questions I can tell he has no clue. He was talking about scheduling an MRI in Denver. I’m sure he doesn’t realize that I can’t go that far, or even lay down through an MRI. Luckily, I barely see him. Twice a year maybe. Since my life changed 8 years ago, I don’t care about doctors and tests and how he thinks of me anymore. I’m too busy enjoying life. I don’t fear my disease anymore or fear what people think of me either. I care what I think of me. I care that I fell into the Pain Cycle and stayed in the negative for 5 years and couldn’t see it. I’m too busy trying to help others find themselves.
Unfortunately, I talk to many. Many people in pain who are “stuck” in it. There’s a reason they can’t see it or hear me say it. It’s like falling down the stairs. When you’re in a tumble, banging down each step, you can’t hear people yelling at you to “Grab the bannister!” It’s like that. All we can do is stop them on a landing and try to get them to see what’s happening before they stand up and fall down another flight. This is what I learned about myself. This is what I woke up from. It’s totally understandable of how we get there and also why we stay there, but to those who are sick of being there, sick of seeing themselves in negativity all the time, we are here to say, “There is a way out.” A long road and hard work…and baby steps, many, many baby steps to take, when you’re ready. To you, Nicole, Teresa, Dionetta, Paul, Pam…and to all those who saw the way out, congratulations and much happiness. I already know we take nothing for granted and enjoy every “good” moment we are allowed to have so instead I’ll say, “Keep taking baby steps, this many years later, for we are in no hurry to get to death, are we.”
So good to hear your stories.
By the way, I started a website and started posting my book and other educational materials. If you know of anyone having trouble with Pain, please send them to it and see if it can help them see some light at the end of the tunnel. Thank you for everything. Here’s the site:
http://walkforhealing.weebly.com/
Also, I had a pen and ink posted in an online gallery all by people in pain. Definitely worth checking out.
http://painexhibit.org/galleries/escape-from-pain/ag09_kinch/
@Walker2005, thank you for sharing your amazing and inspiring journey. Congratulations on your cross country trek and crusade for education and awareness of chronic pain issues.
it is the small steps we take each day that make the difference. small steps lead to more steps and bigger steps. In the beginning it seems impossible… but with patience and perseverance there is a tipping point and it becomes easier and easier.
I think it starts with a mental attitude change as you indicated in your relating your story. One day you just began to question your thinking “I realized that I was labeling myself “stuck on the couch, unable to walk,” but if this was true, how was I able to go to the bathroom? So I started walking to the bathroom as an exercise.”
Our body believes what our mind tells it. There are so many success stories. some dramatic and some not so dramatic but success none the less. And they all started with a thought…I can do this. I will not surrender to pain.
This in no way says there will be no pain but it does say that function and activity can improve. AND it in no way puts blame on the individual. (there is enough blame heaped on people in pain by society) I found that instead of beating myself up for being inactive due to pain I just decided that that sort of thinking was counterproductive. I needed to love myself enough to want to change. I needed to want to get up off the couch and take my life back. I needed to learn how to be gentle and compassionate with myself. It certainly takes courage and it takes support to make these changes. We can’t do it alone.
And we have to discover what motivates us, what works and what doesn’t work.
Wonderful Blog article Teresa. I know that the temptation is to just lay around or sit in the recliner for hours on end. “it will hurt more if I move” so I don’t move – this leads to de-conditioning and actually more pain.
Although I have lived with pain since I was in 5th grade I never let the pain rule my life. But I recently had a new experience with pain. Waking up in the morning with stiff painful joints. It takes 10 – 15 or more of range of motion, stretching, and relaxation breathing to get up each morning. I find that once I am up it takes 2-3 hours or more for the pain to subside to a low roar (4/10 which was tolerable). I also found that any period of relative inactivity such as sitting at the computer, standing to teach a class, sitting while meeting with students, or sitting during a client home visit to teach them relaxation and coping techniques, would lead to increased stiffness and pain that would take time to resolve back down to the low roar.
I can not maintain perpetual motion. So I change activities frequently trying not to be inactive for more than 30 minutes. I pace myself and take rest periods as needed, I go for pool therapy 2 times per week to increase range of motion, build the muscles to support the joints better, and build stamina. (I was pretty inactive in the first months of this acute pain and it was difficult to get out of bed in the beginning because the pain was so intense, so I really got de-conditioned). I use all the techniques I teach my clients. AND I have come to the realization that this may be with me for some time and I refuse to surrender to the pain. I try to schedule something to do everyday so that it gives me incentive to get out of the house even for 30 minutes some days.
I agree getting off the couch is essential…but being in perpetual motion is counterproductive. Pacing is the balance point. Having a reason to get out of bed and/or off the couch is essential to survival and success.
Like you, I have advocated for those living a journey with pain for many years now.
It is a wonderful change of pace to hear the victory stories. I tell people all the time that the pain doesn’t have to change who we are inside. It can make it hard to find that person we once were.
If we can just make the move to look deep enough, we will be surprised just how much fight we have left to be the person we each want to be.
It is wonderful to share the feel good stories with people because it is important for them to see that there can be life after pain.
As an advocate for pain treatment improvement I hear a lot of very tragic stories and I know the majority of us have been through the ringer, but I would love to hear more stories of what can only be described as; “The human spirit’s ability to overcome enormous odds.”
I truly believe that what I rescued that fateful day with an epiphany, was my old spirit. I felt like it had been hung in the closet while I went about being victim to pain’s grasp. And when I dusted it off and put it on, I felt like pain had no chance. Yes it would always be around. Yes it would try to mess up my life and bring me more and more losses, but my spirit was like a superhero, jumping in to save the day. It’s been 10 years now so I can safely say it’s real, not some mental placebo or psychological trick. Knowing the pot of gold waiting at the end of the rainbow, is making that first move off the couch worth it?
To me, and you, Teresa, it was life changing!
Walker2005,
What a wonderful story, thank you for sharing.
It is my hope that others are able to find the wonderful adventures waiting for them that you and I have found.
By taking that first step of getting up off the couch and walking around the couch.
Here’s a couch story for you:
In 2004 after being diagnosed with 2 spine diseases I found myself stuck on the couch unable to hardly move or walk. I used to watch the exercise shows on TV, especially the one doing exercises in a chair, and I realized that I was labeling myself “stuck on the couch, unable to walk,” but if this was true, how was I able to go to the bathroom?
So I started walking to the bathroom as an exercise. I concentrated on proper walking techniques and breathing that I learned in pool therapy. Within a week I elevated it to 3 times around the couch and 6 times to the bathroom.
Pretty soon I was adding the stairs into it and soon after, the front yard. Within 4 months I had built up to walking around the neighborhood where I started meeting people and got them to walk with me. So the idea of starting with extremely easy movement, done properly can lead to great things.
It works so well in fact, that 1 year later, adding distance little by little, I walked 2400 miles, from Chicago to LA on RT. 66, crusading for education and awareness of chronic pain issues and advocating for people in pain. I know that not everyone can do things to this level
( I was an avid hiker and mountain climber BP- before pain),
but it just goes to show that starting small and adding small steps into it little by little, you can accomplish amazing things. Looking back I remember starting the couch walks and thinking, “learning to walk is gonna take forever. I don’t know if I can keep this up.”
But now, 10 years later, it seems like it all happened in a very short time. The accomplishment completely changed how I see pain, feel pain and attain happiness, productivity and peace of mind.
All from walking around a couch!