Sometimes hubby and I go to a motocross track on the weekend. Hubby races a sports quad, and I really enjoy going too because I grew up around fast cars because of my brothers. I am familiar with the noise and the smells. My dad owned a shop for car repairs, so it was something I was always around. The smell of grease and oil actually reminds me of good memories and that has continued with my hubby.
When we first started going to the track, I was in much better health. Traveling to the motocross tracks was easy, and I could run from jump to jump watching them ride. Since my pain level has increased, we’ve had to improvise.
Hubby brings a generator so I can plug in my heating pad. I have sat in 90-degree heat with it against my back. On the sweltering days, he brings a powerful fan that everyone enjoys. We have a pretty good set up. I know how lucky I am that he helps me to be as comfortable as possible.
The obstacles have been worked out so I can enjoy being there even though I have chronic pain. Hubby loads up all my extra bags of needed items for the trip. I will decide when to take medication or apply a patch, so it is all working together for the most extended moments of pain coverage during the trip and watching him race.
Before chronic pain, I made videos of the guys riding which I really enjoyed doing. Now, I video from a stationary position because I cannot run around the track anymore.
Everything in my life had to change to accommodate my illnesses and going to the track was one of them. At first, I fought it. I wanted life to be like it always had been for me, no struggle to do the things I love.
I am a creature of habit, so I am not too fond of change, but I needed to reinvent myself. I was tired of grieving my old life or the life that I thought I should have. I was profoundly depressed and full of anxiety, and I decided I needed to change. I am learning to reinvent the activities I love by finding solutions to each problem I faced. It’s been two years since I started the process of determining what I needed to do to have a fulfilling life even with chronic pain. Bottom line: I have to accept it.
You may cringe when I mention acceptance of pain. Change is hard, and many people think if you accept your pain, you give up, but it does not have to be that way.
Acceptance is only accepting that you need to make changes to your life. That is all you agree to. You need to look at it differently and get creative. If life gives you lemons, make lemonade!
This is accomplished by learning new ways to do things you love to do. The activity may not be exactly the same, but the passion will be there. You just have to look for it.
Life is messy and painful. It is so hard for me to accept that, but that is what we must understand when living with chronic pain. Reinventing yourself or your activities will not make it easier, but it can resemble the life you had before.
I encourage you to take an inventory of what you loved to do in the past that you can no longer do because of your illness. Break down each problem by finding solutions one by one, then you will reinvent your life.
I met with someone from my House of Representative’s office yesterday afternoon about how chronic pain affects our lives.
I think it went well. I presented the information in four parts: life with chronic pain after the CDC recommendations, addiction, chronic pain, and suicide, and legislative solutions. He seemed to listen and wrote a few things down.
I have done what I can by having this meeting. What this office does with the information is up to them. I don’t know if I made a difference or not, but I hope that they will remember our meeting when any legislation involving pain and pain research comes up.
I think everyone should do this kind of thing at least once even though it’s not easy to do for someone with a chronic illness. It took me many emails and three months to have the time to put together a notebook of information to leave with their office.
I am not naive thinking this one chat with my Congressman’s office will make an immediate difference. We have an unbelievably tangled mess with the opioids, chronic pain, and why people become addicted. To fix these colliding emergencies will not be easy.
I “put my drop in the bucket,” so to speak. Other people need to do the same, or the bucket will never be filled with individual drops that make it overflow showing a need for action by our government to protect people with pain.
We need to be brave by speaking out, especially about the need for expedited pain research. Everyone might as well get comfortable with the turning tide on opioids. It is not going away.
If anyone wants ideas or information about how to speak to your congressman, please message me. I will be glad to help you make a difference in the chronic pain community.
I am starting to become discouraged because of my limited abilities lately. I tell myself that I am not a burden, but sometimes I do not believe it. Even though it feels like it will never go away, I must remember that this level of pain is not going to be forever. But sometimes when you are in severe pain, that is all you can see and feel and taste, so it can be hard to change your perspective to a healthy one.
I will have a break in the severe pain eventually. I know this. I have begun to notice the rhythms of my pain. I’m learning to go with it instead of fighting every step. I may not be able to change that I am in pain, but suffering is optional.
After all the hoopla in the last post about the opioid symposium last week, I ended up not going to the event. I admit that I was disappointed that I would not be able to make a connection with my state representative, but my mom had a medical event. She is 83, and I am her caretaker. She is self-sufficient usually, but I did not want to leave her until I was sure that it was only a virus and nothing serious.
As soon as I have the time, I will request a visit with my state government officials to discuss how chronic pain affects every aspect of our lives and how their decisions will impact the chronic pain community.
I am not advocating for opioids around the clock for everyone. I want people to understand the reason there is such a backlash from chronic pain patients about wanting their opioids is because the government agencies are leaving us with no alternatives that actually work to replace the pain relieving medicines they want to take away. I believe every person I have spoken to about this issue has said that they would never take another opioid IF they had something else that actually worked to relieve their pain.
We need more research on pain because everyone experiences it differently. How we perceive pain is a complex interaction between mind and body. There is nothing that happens in the individual that affects only the mind or only the body. This interaction involves the nervous system and other factors, which include: genetic, culture, modeling, thoughts, stress, history of abuse, and trauma.
Right now pain research is lacking, but many people are deep in the trenches working tirelessly on changing the fact that we do not have affordable, effective alternative to the opioid medicines. You can also help by telling your story to your elected officials and make them understand our difficult situation, so more money is allocated for studies about pain.
My mom is feeling much better today, and I am getting back into my regular rhythm which helps me to feel the best I can. I have been in extra pain because of the rainy, hot weeks we have been having. Also, I cannot seem to bounce back from the trip to Chicago for the chronic pain support group training. I am pushing the first organized meeting in September. I am praying that I will be able to get everything done in that timeframe.
What positive things do you do when you get discouraged by not bouncing back as fast as you would like from a flare? Do you get impatient and push through the pain or do you realize you need to up the self-care?
Whew!I am starting to catch my breath from the trip to Chicago for the chronic pain support group training last weekend.I am experiencing more pain than I expected, and it has slowed me down tremendously.
But let me tell you about the training instead!Pain Connection (a program of US Pain Foundation www.painconnection.org. www.uspainfoundation.org) held the training. Every one attending and the leaders were awesome. We all connected almost immediately.Many different personalities in the room and different belief systems, but we all came together as one to learn how to help the chronic pain community by starting support groups in our local areas. We also learned things that we can apply to ourselves for self-care like guided imagery and meditation.
We went through so many aspects of chronic pain/chronic illnesses and how to have an effective treatment plan so you can have a good life. I will have plenty of topics to write about and use in a support group setting; too many to name it all here today but I cannot wait to share it all.
My biggest take away is the Treatment Tree. The Treatment Tree idea and planning can help you to find tools and skills for every aspect of your life: physical, emotional, spiritual, social, career, hobbies, and organization. It recognizes that we have many different ways that chronic pain affects our lives and helps us to find solutions that work every day.
I have never had a doctor that considered all these aspects at one time when deciding different medical treatments for me.We must be our own advocates. I intend to give the information I have learned to you so we both can take it to our doctors so they can see the big picture. We need more than just a prescription!
I also learned more about our pain being so much more than just in the physical area of an injury. There are so many aspects of our lives that affect our pain, and the brain plays a very large role in ways that I never knew before. As I learn more, I will pass it on.
Chicago was nothing like I have heard about it. I pictured dirty and unfriendly.We seemed to be in a more industrial area in the north west of Chicago.It was very clean and everyone we came in contact with was very kind and helpful.I couldn’t have asked for a better trip.
I love meeting new people and hearing their life stories and this was no different.It exceeded my expectations and I am so thankful that my hubby and I we both were able to complete the training.
At the end, we had to pick a stone with a word on it and tell why we chose it.I chose happiness because I have always chased happiness.I didn’t say anything profound because being put on the spot like that shuts down my brain.😁But I always thought happiness was living without any troubles or sorrows and when I got to that point, I’d be happy. But I have found out that happiness can live amongst the troubles and sorrows. With this knowledge, I became unstuck.
JOY IS BUT THE SIGN THAT CREATIVE EMOTION IS FULFILLING ITS PURPOSE.
– CHARLES DU BOS
That’s what this blog is all about: changing perceptions. Changing the perceptions other people have of people with pain and changing our perceptions of ourselves and our chronic pain journey.
Knowledge is power.Go out and get you some!
I am excited!! I am 6 followers from 100. Help me out! Follow my blog!
Being authentic is the emergence of your genuine self. It is when we arrive at who WE say we are and we do not rely on how others define us.
Being true to ourselves allows our actions to align with what our core believes.
When there is a shift in our actions that cause conflict with our inner beliefs, difficulties will arise in our life creating speed bumps and sometimes complete roadblocks making us feel stuck.
When you have chronic pain, it increases and complicates the roadblocks further. Like when someone asks how you are doing. I’ve always had trouble answering that question.
My hubby and I have code words. If I tell someone I am “peachy” then he knows the pain level is high, but I don’t want to complain. Most people do not understand the experiences people with pain go through.
It’s easier to just say you are fine. This false response creates stress because we want to be real about our experience and the pressure of not being authentic creates more pain; physical and emotional. So, we are not helping ourselves when we lie about how we feel because it is easier for others to accept or so that we don’t have to say no.
Who do you see when you look in the mirror? Is it a familiar friend or a distant relative?
SIGNS YOU AREN’T LIVING AN AUTHENTIC LIFE
You are a people pleaser – do you do things for others out of guilt? Feeling like you must do everything for everyone will get in the way of your self-care.
Honoring others is important but not at the expense of our health. It is not selfish to take the time for ourselves.
Some days I find my body exhausted and in excruciating pain. I only have myself to blame sometimes because I did not say no to a request or make the time to take care of myself.
Refueling yourself is the best way to be able to give to others
You question your own thoughts – do you rely on others to validate your feelings? Doubt fuels negative thinking. We can find ourselves quickly spiraling down when we doubt ourselves. I constantly doubt myself. I doubt myself right now while I am writing this! On some days my unbelief in myself can be paralyzing.
You compare yourself to others – do you feel like other people have it all together and you don’t? I have a love-hate relationship with social media. So much of it is fake. No one and I mean no one has a perfect life. A friend of mine told me that her daughter would spend hours taking selfies to post one picture online. Hours to post one picture! Live who you are.
You blame others for your problems to avoid dealing with them- do you accept responsibility for your actions? Isn’t it easier to blame someone else? It takes the pressure off of ourselves and relieves the feeling that we need to take some action. There is a little part of everyone that does not want to accept responsibility for the things we do. Not taking control of your actions is just denying there is a problem and denial will keep you stuck. Look at yourself honestly but remember to look with love also.
When we do not live authentically, we become stuck where we are at in life which can lead to depression and anxiety.
I developed severe anxiety and depression after the back and leg pain began to be daily in 2014. I lived in the pit with all of these things I listed above and it kept me frozen with fear. I did not want to leave my house or see anyone. And I definitely didn’t want anyone coming over and seeing my home.
Over the past 2 years, I have worked very hard on trying to stop the control that fear has over my life. I have picked up a few tips on living authentically I’d like to share with you. It will give you a few tools to find your happy place by learning to live and love who you really are, even with chronic pain. Your life can still be exceptional!
HOW TO EMERGE AS WHO YOU WANT TO BE
Decide to accept yourself. We need to love ourselves on purpose as we are at this exact moment. We can choose to love ourselves like we can choose to be angry or to be sad.
Accepting ourselves can be especially hard if we feel our body has let us down because we have chronic pain.
Living in a shell of a body that always seems to fail can make us feel unworthy of joy if we allow it to.
We each need to meet ourselves where we are at in this world and begin a real journey of self-discovery. We are exquisitely made by our Creator. Be you.
Make a list of your strengths. Whatever we are good at should be celebrated. With chronic pain, life can be challenging.
Think of all that you have overcome and put it on this list. You are reading this, so you are still standing. We may have lost some of our strengths, but we cannot forget to remind ourselves of what we can still accomplish.
I promise you that you can continue to have fulfillment with chronic pain. Dig deeper, and you can find new ways to be strong. Don’t forget you are intelligent and creative.
Stop listening to the negative voice in your head. Our minds are powerful, and we can decide where our thoughts go. Your thoughts also decide your next steps in life.
Just remember that we would probably never speak to other people the way that we talk to ourselves.
Slow down your thoughts to find out what you are saying to yourself and change the dialogue to be who you want to be.
Distance yourself from the people that do not believe in you. Your feelings and thoughts are important.
We need to surround ourselves with people that will nurture us, helping us reach our true potential, not tearing us down or keeping us stuck.
Grieve your previous life before your chronic pain or illness. I wish I had a magical way of going through grief without any pain, but everyone is much too different to have one tried and true way to get through grief. The five stages are denial, anger, bargaining, depression, and acceptance and are a part of the framework that helps us understand what we are experiencing when we grieve a loss. I would suggest if you feel stuck in any of the stages of grief to seek out professional help.
Spend time doing the things you love. I am doing a complete overhaul of how I spend my time every day. I feel like I don’t have time for everything I want to accomplish. I have found that I need to make blocks of time and set them aside for the things that I enjoy doing. Find what you love and do it.
Communicate with the people around you. I understand now that I need to communicate truthfully with the people close to me. It is incredible how much of a difference being real has helped with feeling good mentally and physically. I encourage you to do it but if you haven’t had a voice in a while. Go easy on those around you. Explain to them the things you want to change in your life and recruit their help.
You can live your whole life and never reveal your real self to the world. What a shame that would be not to be truly known. You can decide today to live authentically and find happiness. You can learn to love yourself and even be proud of yourself. It creates better life opportunities and promotes creativity. It empowers us to live our best life, even with chronic pain.
Your life is not over. In some ways, when you get to this vantage point of living authentically, your life has just begun.
I have always wanted to meet Apostle Paul out of any other person in the Bible. I know that is a shocker because most people say they want to meet Jesus, but I am fascinated with Paul’s letters of strong faith. So, when I heard about a movie of Paul’s life, I knew I had to see it.
Assigned reclining seats is a game changer for this anxiety-filled chronic pain girl going to the movies! I hope you have one like that in your area. I was so comfortable, and I even saw that some people brought blankets. What a great idea! The seats were roomy too. If I could just figure out how to take my heating pad…
In the movie, Luke went to Paul where he was in prison and wrote down Paul’s wisdom for the encouragement of the early Christians. I am so thankful that we have the letters now. Without the struggles that Paul went through he probably would not have been able to give such wisdom. Paul’s writings have always given me strength and motivation to keep on toward the goal on the hard days.
Seeing in the movie what the early Christians went through and the violence committed against them just for their belief in Christ was brutal, but it helps me put some things in perspective about my chronic illness.
Paul had a “thorn in his side.” He begged for God to take it away, but God did not. The MSG versions of 2 Corinthians 12:6-10 explains how Paul felt about his thorn in a way that we can understand it better and apply it to our chronic illness.
6 If I had a mind to brag a little, I could probably do it without looking ridiculous, and I’d still be speaking plain truth all the way. But I’ll spare you. I don’t want anyone imagining me as anything other than the fool you’d encounter if you saw me on the street or heard me talk.
7-10 Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
My grace is enough; it’s all you need. My strength comes into its own in your weakness.
Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.
Have you cried out to God to take your thorn of chronic pain away? I have. I’ve gotten mad that He wouldn’t take it away. Some days, I am still kicking and screaming. It can be easy to get stuck being angry about it, but Paul boasted about his weaknesses. He had baggage just like us. Everyone has things they regret, or they don’t like about themselves, and even Paul had issues.
In the movie, he was sleeping, and the dreams of his past when he persecuted Christians haunted him. The devil’s angel of condemnation was visiting him trying to undermine his faith. Can you imagine Paul’s conversation with God?
Paul: Please God let me out of prison and give me my life back!
God: My grace is sufficient for you.
Paul: I cannot handle living this way!
God: My grace is sufficient for you.
Paul: Please, God, take away my thorn in my side.
God: My grace is sufficient for you.
Why didn’t God make Paul free or take away his thorn? He had the power to do it. Couldn’t Paul do more for Christ on the outside of the prison rather than inside? We think we know how the story should go but God has His own higher plan. Things we cannot see coming. We must rely on faith as Paul did.
With his thorn in his side, whatever that might have been, Paul said he delighted in his weakness. Do we resign to be miserable or can we make a conscious decision of choosing to delight and even boast in our weaknesses as Paul did? I know that the thought of this is painful because all of us really just want to be fixed, but what if that isn’t in the plan? That’s a hard thing to wrap your head around, I know.
The best thing we can do is trust in God’s bigger plan and rest in Him. Easier said than done sometimes, isn’t it? We are to have the faith of a child. Sometimes a child does not fully comprehend a situation and has to trust their parents to take care of them. We should do the same with God. We are His children, and we can trust Him.
How did I get to the point of just trusting God?
I look at scriptures to find my faith and trust. Reading the Word creates faith through the Holy Spirit. I study it by reading different versions to make sure I understand the content. It is also important to know what context of the verse or verses such as who wrote it, to whom it was written and the culture at the time it was written.
I also read Bible commentaries that you can find online. (Scroll down the page on Bible Gateway, and you will find the free Matthew Henry’s Commentary for the Bible.)
We need to believe the truths that we have been given in the Bible and apply it to our lives.
Praying also helps. Do you let Satan push you to your knees in despair or does it put you on your knees in prayer? Tell your thoughts to God. Tell him all of them. He can handle it, I promise. He already knows how you feel, but He wants you to tell him; so just say it out loud and get it in the light of Jesus. Sometimes we fear what God thinks of us, but we need to look at ourselves the way God looks at us. Do not be ashamed and allow God’s love to flow over you. It’s ok to be honest with God.
What hard questions are you asking God today?
How do you handle your “thorn in your side?”
Are you asking God to take your body out of the prison of your illness or are you choosing to delight in your weakness and boast in Christ’s strength?
I have chronic pain. When the pain is severe, I try many things before I get the pill bottle out. I want people to know that I do not want to take opioids because of the scrutiny and stigma attached, but I must because they make my life livable.
I have tried a long list of things to stop the pain, and I eliminated what didn’t work. Now I have a pretty good set routine of what does work, and that includes prescribed opioid medication as a last resort.
When the pain becomes debilitating, I usually start out with a heating pad in my chair, then lay down or sometimes combine the two. Expensive over the counter creams and prescription ointments are scattered all over the bathroom counter. I get entirely undressed a few times a day to put them on, only to soothe the pain, not eliminate it.
Sometimes, the only thing that works to stop the pain is a prescribed opioid pill. Because of this, taking away my medicine will significantly reduce my quality of life and those around me.
I can take care of all my basic hygiene EVERY DAY when I manage my pain with opioids. I cannot shower, wash my hair, shave my legs, brush my teeth, put on my makeup as “normal” people do in the morning. I have to spread it out over the day. I have to make choices every day of what activities I am going to attempt because I know I cannot do all of them all. Things, like washing my hair or showering are tough for me. There is so much bending and twisting involved when getting undressed, bathing, drying off and finally, getting dressed again.
I can cook healthy meals for my family when I manage my pain with opioids. Prepping and cooking requires lots of standing. Standing or walking increases my pain. I start prepping for dinner in the morning, and I also work on prepping in the early afternoon after I have laid down at lunch. Some days the only thing I accomplish is cooking dinner. Without opioids, I cannot cook every day for my family or myself.
My relationships with others are better when I manage my pain with opioids. When you are “paingry,” it affects everyone around you. Without opioids to manage my pain, I am “paingry” all the time. Sometimes, I wonder what it is like to live with me, but I’m too afraid to ask. You cannot think about anything else when you are in severe pain, so you have nothing left to give physically or emotionally to your family and friends.
I can enjoy life when I manage my pain with opioids. Without pain relief, chronic pain overtakes my body, and my mind says, “You can’t do this!” Excessive chronic pain in your body just hammers away at your optimism and your focus. I want to participate in my life. I want to go outside and feel the sun on my skin instead of laying in bed in pain not wanting to do anything except to die because the pain is too intense.
I can keep my house cleaner when I manage my pain with opioids. I do the best I can, and even with opioids, it is still tough to stay on top of cleaning. Without the pain medicine, there are many things that I will not be able to do simple things like mop my floor. It will further isolate me because I will not want anyone to see the inside of my house.
I have less depression and anxiety when I manage my pain with opioids. When I cannot do anything because of my chronic pain, I become depressed. I am not able to live my life, and I am forced to stay alive in severe pain and mourn my lost life and dreams. I must live like I am physically dead. But with pain medication, I can actively participate in my life without fighting depression every minute.
I can leave my house and enjoy being with others when I manage my pain with opioids. I don’t have to cancel as often. People get tired of that. I do not like being a disappointment by canceling and losing friends because of pain. This leaves me further isolated.
I can do everyday things for my self when I manage my pain with opioids and not feel like a burden to those around me. I want to be able to be independent; to be able to do things for myself and opioids allow me to do that. I cannot work and be a productive member of society when I am in untreated severe pain. Not working will make me a burden on society and my family.
I can ride in a car without discomfort when I manage my pain with opioids. Without proper medicine, it is impossible for me to sit in a car for extended lengths of time. I have family in different states. Without opioids, I cannot travel to see them. I just want to go and see new things and my family members.
Financially, the pills are the cheapest option to manage my pain. I can afford the prescription pain medicine because insurance covers it. The alternative treatments that I know will help me are not covered by insurance. I cannot pay for them all, and I will suffer because of it. I need an affordable option for my chronic pain.
I do not reach for the pain pills first. I have a list that I go down and try before getting that pill bottle. I don’t want to take them. I want a fully functional body, but no one seems to know how to fix my problem.
I have worked hard for the past ten years to create my new normal so that I can live a full life, a productive life with disabilities. I am willing to jump through all the hoops of pill counts, drug testing, excessive doctor appointments, and pain contracts that are expected of me to maintain accountability. We need more research for chronic pain to find new treatments if we are to eliminate the opioid medications. I gladly welcome that prospect of never talking another pill again.
Until that day, having an opioid prescription allows me to live my life to the fullest with my disabilities. That’s all I’m asking. I just want to have my basic needs met. I just want my life to be livable.
I pretty much disconnected this past week because I was on steroids. Medications like that affect me strongly in a negative way, but everyone is different. My pain level had gotten high enough that I was willing to go through the week-long regimen. I had been talking about doing it for a few months, but because of how it affects me so powerfully, I dreaded it. I guess I should be thankful that it is still an option sometimes instead of having no options at all.
With these types of medicines, for me, my logical brain goes on vacation, and my emotional brain goes to high-stepping workaholic wonderland. Except there is nothing wonderful about it. Significant anxiety and wide mood swings of depression and despair are what I experience intensely along with the physical side effects.
My poor hubby. He has been through many steroid hell weeks because of the many steroid shots and pills for the chronic back and leg pain I have needed over the past ten years. Usually, I become a mean ogre with a short fuse, but this time there was crying– lots of crying. I cried about everything.
My hubby may not always understand what crazy emotional or physical side effects that some medicines cause in me, but I can say he tries to get it if I will explain to him what is going on in my head. This week, he just rode the wave with me.
He could have quickly gotten relief from my medication-induced distress when I started saying I was going to stop taking the pills after the initial injection and only one day of pills. I was just so miserable. He helped me through the thought process, which I know should have been obvious, and thankfully, I am on the other side of this experience.
Although I have a choice on how I view my chronic pain, I don’t have an option to not go through pain every day, so I just do what I have to do. My hubby did not sign up for this, but just as he helped me stay committed to the steroids, he commits to me every day regardless of my circumstances with pain.
Don’t get me wrong, we’ve had some issues while adjusting to my new normal, but we are stronger because of the struggle. Our bond is tighter due to me having chronic pain because it has made us both look beyond ourselves and find out what commitment literally means. It is an effort that we make every day for each other.
So every day, when the sun comes up, hubby and I get a fresh start if we failed each other yesterday. We get to try again with each day building on the next. That’s how we have made it this far. That’s what unconditional love means to me.
Get our voices out there! Answer the questionnaire and let them know people with pain matter and that we are not all drug addicts buying off the street causing this “opioid epidemic.” Let’s give them some facts and be NICE!