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?
There will be an Opioid Symposium on Monday night hosted by my Congressman. I just found out about it, and I’m scrambling to get facts and figures together so I have proof of the information I will be sharing with them if given the opportunity.
To begin to prepare, I called Congressman Rouzer’s office to find out how the chronic pain community will be represented in this setting and what they hope to accomplish.
I spoke with someone that explained that the symposium would have four panels as it relates to opioid stigma, treatment and resources, prevention and law enforcement. Each group represented will have 2-panel experts that will talk for 30 minutes each.
She said one panelist would be a doctor from our hospital, and he “knows chronic pain.”
I respectfully disagreed with her. Unless the doctor is a chronic pain warrior, he can shed no light on the physical and emotional life transitions that being in pain 24/7 brings.
Knowledge of the disease does not portray us. Having pain now and then does not describe us. He cannot begin to understand the suffering of chronic pain with chronic illnesses unless he has lived with it. He cannot represent us on this subject.
She explained to me that it is a complicated discussion and “unfortunately, everything could not be heard in the 2 hours allotted to the discussion,” and that is why no one that has pain is sharing our chronic pain perspective for us. That is unacceptable that we are not part of the equation of the future of opioids, and I intend to change that in the future symposiums.
She became silent when I asked her if Congressman’s Rouzer knew that people are losing the will to live and some lose the chronic pain battle to suicide because the suffering is too high because of the recent changes with opioids.
Her ultimate response was that I needed to have a meeting with his office. They want to hear my perspective which is a beginning.
What are your thoughts as a person of pain about the lack of representation at this event for people with chronic pain?
If you have been negatively affected by this lack of proper treatment or you know of someone that committed suicide because of the untreated physical pain they are in, please send me the information by my Contact Form so I can share with the people that will be shaping the chronic pain communities’ future. Alternatively, email to firstname.lastname@example.org
It does not matter if you live in my district or even in the United States. I want to hear your stories so that I can take this information as far as possible. I will keep it anonymous if requested.
Much Love and Many Prayers
If you are struggling with living each day with chronic pain, if you wake up and you think to yourself, you cannot do it again…You can. Just keep going.
I started writing an ethical will for my three sons a couple of years ago.
I’ve never finished it because I have so much I want to tell them. I just don’t know where to stop.
An ethical will is a way to tell your loved ones your values, blessings, life lessons, hopes, and dreams for the future. It’s simple really.
It can actually be about anything you feel is valuable information to pass down to the next generation, and you do not have to wait to die to pass it on to your family members.
You can give them a copy at any time for any reason, or no reason at all.
It is not a legal document of any kind. It’s just thoughts and things you want to share.
Don’t we all have times when we wish we had one more moment in time to tell that special person something that we value deeply?
Here is just a tiny sampling of things I have written in my ethical will of words of wisdom I want to pass on to my children.
Life is hard no matter what path you go down.
The people beside you are hurting in some way just like you.
That’s just reality.
EVERYTHING depends on how YOU react to it.
You can try to find positive instead of looking for the negative.
It’s harder work, but it pays off with dividends: Joy.
I guarantee you’ll have joy if you learn to ride the wave instead of drowning in the wave.
Much Love and Many Prayers,
JULY Chronic Pain Support Group Update:
I am waiting on the final go ahead from the community agency that is allowing me to lead a chronic pain support group at their facility locally.
I will now be making the flyers and cards to give out at doctor’s offices locally and to put up around town.
The dream is slowly coming together. I want to thank everyone that is supporting and encouraging me; specifically, my hubby. This is probably one of the craziest ideas I’ve ever thrown at him but he has never lost a step right beside me. Always & Forever.
Help My Mission of helping others live the best life they can with chronic pain.
Photo Credit (I could not bring myself to crop the photo – the colors were too awesome- so it is too large but beautiful) by Paul Larkin on Unsplash
This morning I was thinking about my thoughts and beliefs that kept me “stuck” for so many years with deep and dark depression and anxiety from chronic pain.
I felt stuck because…
I did not have belief in myself.
I allowed others to do everything for me.
I always thought my body had to be completely healed to have a better life again.
I thought I must be weak because I can’t push through the pain, and that made me feel shame.
I became angry when doctors told me I must learn to live with it so I “dug in my heels in” that a cure must be found.
I didn’t take responsibility for my treatment. I trusted in doctors to have complete control over my treatment without question.
I believed that going to a psychologist meant the pain was only in my head.
I had untreated severe depression and anxiety due to pain.
I relied only on medication and not lifestyle changes to get through my pain.
I was grieving my “old” life and who I was before chronic pain.
I kept myself isolated at home.
I compared my life to everyone else’s “perfect” life on Facebook.
It is in my personality to resist change and to be inflexible mentally.
This is just a few reasons I could not move forward with my life.
So, how am I turning things around?I realized over time that I was the only one that can change my situation. It is a long slow process. I had given away my power a long time ago, so I had to find the strength to make the changes. I struggle so hard with making changes. I just cling to whatever I am doing, even if it isn’t the best thing for me. Change is scary.
In fighting to change for the better, I felt like I was in a cocoon pushing out an arm and a leg, occasionally punching through only to have it close back up quickly. There are days I still struggle with breaking through the difficult stuff and being consistent.
When I hit 250 lbs from being sedentary, I woke up and realized my weight issue was completely out of control. I sought out a surgeon for weight loss surgery. Part of the process is seeing a nutritionist and psychologist. Both have helped me change my life.
This was the first step in lasting change although I didn’t know it at the time.
I had to take a very long multiple choice quiz about my behaviors and beliefs. The results are used to determine if you are a good candidate for the surgery mentally and if you will commit to making the lasting changes. Needless to say, my results showed I “got issues.”
That was the beginning of my journey to healing. It was not the cure I was hoping for. I was looking for that miracle that would make my life go back to normal.
I would love to tell you I have it all figured out but I am moving very slow with the changes. We are talking tiny baby steps. Creeping ever so slowly over the past two years.
With every a-ha moment of understanding how my brain processes thoughts, I began making small changes in how I thought about myself through therapy.
For me, going over the old me and keeping what works but throwing out the no longer usable tools in my mental health toolbox has been helpful.
Has it been easy? No. It has been excruciatingly painful emotionally at times, but I have learned so much about myself and the people around me.
Becoming aware of who I really am and accepting that person even though I am different than the beliefs I was given as a child has been key to making changes.
It is just the starting point sitting across from a mental health professional. You have to get over the hump of using your brain to control your thoughts.
Most everyone has heard the buzz word “mindful.” It is having control of your immediate thoughts and changing your negative belief pattern while living in the moment, not in the past or future but right in the present.
Feeling stuck, lonely, and depressed is no way to go through life. Some people do not win the battle, and that makes me very sad. I hope I reach someone today that feels defeated and they seek out professional help.
You can choose to take control of your thoughts. There is no shame in seeking out help. The medical doctors are not taught how to handle emotions and mental health issues that chronic pain causes.
Medical doctors have very little training in treating a patient’s emotional pain from chronic pain. Mental health services should be offered when you are diagnosed with chronic pain and not at the end when they do not know what to do with you anymore. They leave you emotionally damaged by chasing miracles and expensive alternative treatments they offer when they cannot do anything else for you.
A psychologist or other mental health professional should be a part of the chronic pain treatment plan in the beginning, and it should be covered entirely by insurance.
Don’t stay stuck.You really can feel happiness in the midst of chronic pain.
I promise it is worth the hard work. The first step is believing in yourself and that you are worth the work. I believe in you.
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 woke up to 52 followers on my blog. I also hit over 560 views for all time. I know that is small numbers, but it is exciting to me. It means success because I have at least helped a few people or at the very least my post resonated with some. That’s all I am trying to do.
I’ve had views from all over the world, twenty different countries. Most are from the USA, Canada, and United Kingdom. Surprisingly, the 4th country is India at 7 and Australia at 5th. Thank you for the international views!
I love milestones. They give me a moment to reflect on where I am at in my journey. One and a half years ago, I was navigating life on autopilot. I was floating through life on one wave after another just trying to get to the other side, but I was not making any progress. But now, I have a purpose again. Chronic pain may have taken parts of my life, but it also gave me a new perspective on life. And that new perspective is what I want to share with others.
I’ve decided to begin sharing more of my daily life in detail while also doing the scripture verse studies that I like to do. I hope this will be helpful for others.
I am also an advocate for chronic pain people. I do most of this on Facebook @ChronicPainWithAHigherPerspective
I try to post the most relevant post that might be helpful to others: how to do your own advocacy for your illness, new treatments, and chronic pain news. Stop by and let me know you are there.
I wanted to thank everyone for welcoming me into the blogging community. I have met some great people here. I hope we continue to help each other in our daily walk with whatever physical or mental issue we are facing.
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?