My Story: Accepting Change is Necessary for Coping with Chronic Pain

My Story: Accepting Change is Necessary for Coping with Chronic Pain

By Tom Seaman.

In 2001, I developed severe chronic pain from a neurological movement disorder called dystonia. My life before and after dystonia are as different as night and day. I went from a very active lifestyle to one that was extremely sedentary. It was a total mind bender. For most of my life, I played organized and leisurely sports all year round. My two main sports were golf and baseball. I could easily walk 18 holes several times a week and some days I played 27 holes. I played baseball from a young age all the way through college, practicing or playing games every day of the week. I loved it and could never get enough.

Tom playing his two main sports.

I also never passed up the opportunity to swim, bike, play tennis, racquetball, basketball, soccer, or ultimate Frisbee, to name just a few of my favorite activities. In the mid 90’s, I trained to be a field goal kicker in the NFL. Along with working full time, I was training twice a day until a hip injury ended that dream. I then studied karate for several years and earned a brown belt. I also traveled and had an active social life. Long story short, I never sat idle for long.

When dystonia prevented me from living my active life, it was a major shock to my psyche. I was not only riddled with pain, I gained 150 pounds from my sedentary, unhealthy lifestyle. I also fell deep into depression and suffered with intense anxiety where it was hard to even leave the house.

For the first 7 years I was miserable. I had a lot of negative self-talk about how I could no longer do the things I loved so much. I characterized dystonia as an evil intruder that “ruined my life.” I was deeply frustrated, which caused a lot of anger and bitterness. This made my dystonia worse because negative emotions increase stress which increase muscle tension and pain. I had to shift my way of thinking if I wanted to live a happier and healthier life.

It was hard work, but I eventually came to understand that change is a natural part of life. Just ask any aging person about their former abilities compared to their current abilities. Healthy aging requires accepting change, just as healthy coping with dystonia, chronic pain, or any other limiting health condition requires accepting change.

Understanding that certain things do not last a lifetime, I thought of all the great times I had playing baseball and golf (and other sports), said thank you for all those times, and let them go. I had to say goodbye. I had to release the past so I could live in the present and focus my energy on the new direction my life was heading. I was lucky to have 30 years of enjoyment from those things. I could have been far less fortunate and been sick my whole life and not be able to do any of it. How can I be anything but grateful when there are so many people who never had the same opportunities?

Over the years I have learned many things to help manage my symptoms (I also lost the 150 pounds I gained) but I still have pain, muscle spasms, and other symptoms of dystonia. They are just not as severe as they once were. One of the biggest keys for helping me better accept my new and different life is that I stopped caring so much that I had something “wrong” with me. This mindset is my biggest ally. It reduces stress and keeps my mind and body calmer.

I would like to say that I freely do activities with ease, but that is not always the case. There are days when things are far too uncomfortable. Therefore, I live my life within the boundaries of my abilities and accept that I can’t always do everything I want. If I don’t accept this reality, I will mentally torture myself when I miss out on things. When I am able to do more, I enjoy the heck out of myself!

I have finally learned to not take feeling well, or even “just okay”, for granted. Even more helpful is doing things when I don’t feel my best. I used to think I had to feel a certain way to enjoy life, so I waited around until I felt well enough. How silly of me. I could still do some things even if it was uncomfortable. I was just so caught up in anger and depression about how much dystonia and pain took from my life, rather than embracing what I could still do.

We all need to grieve, but we can’t let it last forever. To be happy, we can’t continue to dwell on what once was. All we have is the present moment so that is where our attention needs to be. When we focus on the abilities we have now, acceptance follows, giving us greater peace of mind and a happier life.

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for the Chronic Illness Bloggers network. To learn more about Tom, subscribe to his free health newsletter, and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram

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Authored by: Tom Seaman

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Emily A

I am very disappointed with the comments on this post. I understand (intimately, as someone who lives with chronic pain) how overwhelming and terrifying life can be when you’re scared that you’re going to lose access to pain relief. HOWEVER…I have noticed a troubling trend of late where every discussion gets centered on opiates. Again, I empathize that there’s fear around pain relief access, but I challenge you to think about the implications of your actions. What does it say about you if your response to a post about having a positive-mindset makes you angry and feel attacked? I know that a lot of people are hyper focused on their pain medications. But it’s concerning and does raise a red flag when members see any post that doesn’t reference opiates as an attack on them personally. There is more to pain management than opiates. Even if there wasn’t an opiate crisis and everyone who needed them had access to pain medications, we would still need other tools and modalities. That’s what’s Toms post was all about. I’m glad he posted it. We have hope. We are hope.

Donna

Excellent article. Acceptance is a very difficult hurdle. Your words are very inspiring, and help with perspective. Thanks for sharing.

Rita KIMBEL

You and I have much in common, the past was athletic, not so much now. I can’t do karate any longer as well as swimming, bike riding, or lifting weights. My gym membership is going to be Silver sneakers, not due to age but inability. A spinalcord injury of the cervical nature, a spinal manipulation, turned popped disc by a doctor I had trusted for many years and allowed him to treat my family before that happened in 2003. I am still angry,now and then, but it’s been 15 years and I’d be a freaking depressed mess, maybe dead if I kept living that moment over and over in my head. Yeah it’s bad but, I can walk the dog, do a bit if gardening, clean my house up, spend more time with my family and help them when they need it. I can’t live in the past, it doesn’t do any body good? And yes, lately it’s been tough with the opiate epidemic but it will pass too and I think things are starting to change already with the pain task force meetings,things have to get better. Stay positive and you will have an easier time at it.

Gini, with all due respect, you have no clue about the severity of my pain. I have spent years wanting to die because of it. You also completely missed the point of the article. It has NOTHING to do with pain medication. It has everything to do with mindset. I still live with pain. ONE of my MANY ways of coping is just as the title states, “accepting change”, which I have had to do so I no longer live in a grief filled world about the life I once had. This is so I can avoid being so depressed I don’t want to live, which is how it was for many years where I never left my bedroom. You have taken a very SIMPLE concept and manipulated it into something I NEVER once even wrote about or suggested.. that being an “anti-opiate agenda”. Where in my article do I even mention the word drugs??? The problem with most people in pain is their addiction to the anti-opiate agenda and how they are being screwed by the government. I am on their side! Anti-opiate is not my agenda. For those who need drugs, by all means they should have full access. I need them too! Your comments were not only completely off the mark, it was a complete insult of me, someone you know absolutely nothing about. It makes me wonder if you even read the article. I am far from ill informed about “wanting to die” pain. I lived with it for decades. It was incredibly irrational to make the comments you did without knowing anything about my experiences.

CTMama2: Thank you very much for such a spot on, thoughtful response and review of my article. I couldn’t have said it better myself. I am very grateful that you were able to put to words what I was thinking. Thank you!

Gini

Sorry, I agree that you have an anti-opiate agenda. Strange. If you think that people in chronic, daily, hourly, nightly PAIN haven’t tried surgeries, acupuncture, will power, PT, etc., I’m amazed at your naivety.

It’s really not so complicated: Drug abusers, aka addicts, take drugs because they want to get HIGH. Pain sufferers take drugs because they want to FUNCTION with the pain at least dialed down to a level where they can. Not so mysterious really, is it?

Somehow, parents (usually mommy) have managed to convince the government that their son/daughter never overdosed from their OWN behavior, no, it must be someone else’s fault! Addiction IS a choice. That’s why AA and NA do and can work, but the users have to “have a desire” to change their behaviors. “Oh, but they are addicted, you cry!” The most addictive commonly used substance is nicotine. Having fought that battle myself, I’ll tell you, it IS one of the worst. Do your research if you don’t believe me. No matter, it’s desire to change that must happen. Every time an addict is detoxed, their relapse falls squarely on THEM.

Meanwhile, the FEDS enable the very ones they incarcerate by handing out welfare to be used for alcohol/drugs, encouraging idle time which gets filled with drug use and schmoozing with fellow travelers. Methadone is awful and should be criminal.

My dear 83 year-old friend used to call me crying that she wanted to die because doctors kept taking her pain medications away and substituting PT! After surgeries, post polio syndrome, severe arthritis, and a broken femur that re-broke, etc., they were worried that this 83 year-old woman would become “addicted!” Nope, truth was, they were concerned about tolerance, but they never explained that to her. Fools. (Possibly using pain medications 3 days and off 1 day would keep tolerance issues at bay. I’ve never heard of any doctor trying that approach for their pain patients, BTW, perhaps it’s too “difficult.” Suggestion by a pharmacist, if anyone is interested.) Having function 75% of the time is better than none of the time.

So, Mr. Seaman, sorry for your personal problems, but from the many elders I know in chronic pain which only manifested itself after a surgery or age-related problem, their pain is so incredible, I don’t think you have a clue. Not because you’re a bad person, you’re just ill-informed about the reality of chronic pain and its intensity.

The War on Drugs is absurd.

CTMama2

What a wonderful blog post! A topic that actually helps me get”unstuck.” Why do some people think acceptance means surrender? That’s a mistake. Acceptance means you’re no longer fighting the fact that life has changed. I have CRPS. That is a fact. I have pain 24/7. Another fact. There’s no cure. I cannot change this nor “fight” it. These are more facts. Accepting that these facts are true and have changed my life doesn’t mean I’m curled in a helpless ball. It doesn’t mean I don’t fight for better education of my rare disorder nor for better healthcare for it. Not one iota. Acceptance of change frees me to do more of that! And it has absolutely nothing to do with what I choose as my personal treatment plan.

Maybe hearing the word “acceptance” initially sets people thinking in the wrong direction. It isn’t the first time I’ve read about acceptance where people have heard what the author is not saying. I can understand the initial reaction—accept what?! But your words are clear. And people are way too quick to make everything about opioids. I understand the oversensitivity about that, as many people with chronic pain are being abandoned and treated like addicts. But that is a whole other subject.

Thank you, Mr. Seaman, for your post on acceptance–not a post on giving up, and not making this about a personal treatment plan. Your words are very, very clear. There is no judgement, no anti-opioid theme lurking anywhere. Nowhere do I remotely confuse “accepting” my pain with “accepting” poor healthcare. Your post is inspiring, and I am going to print it up to return to again and again. I look forward to seeing more from you.

Thank you for all the comments. To respond to some of them regarding the point of the story, I am just sharing one piece of the puzzle that helps me to help cope with pain. I do all sorts of medical and alternative things to treat my physical pain and I fight it every day. Letting go of the past and the old me, and embracing who I am now and what I can do is what helps me stay in the present moment and keep my sanity. If I continue to dwell on all I could once do and ignore all that I am now, the depression I lived with for a decade will persist, and the physical pain worsens. I am in not in any way, shape of form talking about giving in, giving up, or not medicating our pain… or referring to the opioid crisis. I am merely trying to infuse a mindset that I find helpful for coping with my painful life. The psychological/emotional toll chronic pain has on us is brutal, and that is what I am addressing in this story, which as I mentioned, is just one of many pieces to the puzzle of coping.

Sky

Is this an “accept your pain and deal with it without the help of opiates” post? Or, is it an “accept your limitations with a chronic illness” type post. It seems both readers below took it differently. With that being said, I don’t feel like I should have to accept my pain! I feel like I should continue to fight for proper care from the health care community. If it’s with medication or other treatments, like PT, talk therapy, dry needling, or whatever works best for you.

SUSAN WIGGINS SIMPSON

Jill i do understand I am stage 4 terminal cancer but after 2yrs suffering them pulling my dilaudid stage 3 they took my med cold turkey left me in cancer pain and opioid withdrawal. Hospice in 2mo left them still bulls’n around I had to choose: heroin, medical marijuana both illegal where I am but what choice did I have, I got kids, dying suffering, chance to get relief or what DEA left, the streets?! The cancer got to where I could feel it eating me from the inside! I went with marijuana, medical grade and it changed my life! I’m better! unreal miracle I am here 8 mo’s later! Now i do fight with everyone here, every petition, my story against the FDA, DEA even using marijuana..It’s not right what they are doing and it wasn’t right I had to fight alone, while reaching out to many! Did my own petition, 20 people signed it! But we all have our opinion, being athletic at one time is a huge part some people’s lives, he shared, we need to care not judge, he isn’t saying give up but trying to say make the best out of what he have alternatively until things will change. We are fighting the gov’t we all need compassion toward one another and if he better…kudos for him!

JaneF

I appreciate your letter, as, we don’t know from day to day, what tomorrow will bring. Accepting and doing the best we can within any situation is the very best life can offer us, that is in our own control. I think you have a wonderful attitude, no reason to let the hand that has been dealt defeat you, keep your chin up and keep enjoying life as long as possible.

An excellent story Tom!! I like yourself try my very best to keep on keepin on through this “opioid injustice” and all. There are days that I can’t do much and that was okay until a little girl came into my life in 2012. She is only 8 years old and the look on her face now compared to the middle of 2016 (the “opioid crisis”….says it all). If there ever was a poster child for this most unnecessary crisis.. it’s my little girl. She tries to play doctor and is now trying to understand why I can’t do what I used to a few years ago. Even though there are days that I get so angry from reading stories from pain patients that I know are worse off than myself, I still try to start over the next day with prayer, faith and a new attitude. Sometimes it works, sometimes not so much. When there are children involved that count on people like ourselves, or the very thought of people that we know are out there who are totally alone and have no one to help them, to myself anyway it only seems to make things ten times worse than they already are. It’s not just myself I care for, it’s every single person in whom this injustice has affected. In reading your story I see you are trying to get the same message out there in your own way. We must continue to encourage one another until this battle is over with. Prayers for miracles for every single one of you, with much, much faith!!!

Jill

I wasn’t an athlete exactly altho I did athletic things. Century rides in my forties, marathons in my fifties, still mountain hiking in my mid sixties. Gardening, camping, ect. Now ten years later it’s not a question of pushing thru the pain, my body simply won’t allow the strength of motion. I acknowledge the change but will never accept it. I’m a happier me when I keep fighting. It’s who I am.

Randy

Positive Thinking can go a long way to the realisation that pain is a part of your life. With the politicians now makeing medical decisions for cronic pain patients. Its really dificult to stay motivated when every web page on line has a shortcut to the opoid epidemic. News ststiins every nite doing the ssme. They are all addressing the issue as if we are all drug addicts. My pain started in 2003 and continues to present day. My list of medical conditions as well as injuries makes no difference in the broad scheme of things. I am 64 years old, i do what i can and what i cant do, doesnt get done. You cant even pay people to work for you. Not at a reasonable rate. They seem to think your retired, disabled and got lots of money. Not so my friend. Still living from paycheck to paycheck. I just had four broken teeth surgically removed.. the dentist gave me prescription for 8, 5mg norco. For any pain I may have. I ran a,fever for two days swollen jaw, looked like a chip monk with a mouth full of nuts on my left side. I took reasonably good care of my teeth, they just wore down till the cusps broke off during meals. What a joke. Ive neve used illegal drugs, nor over dosed on any drugs. I’m a retired policeman with 24 years honorable service. There was an old saying, it may still be used at the VA, I pray it’s not, “deny till they die”. The problem is with addicts not law abiding patients who follow the rules, and believe me there were plenty of rules just to get pain meds. Enjoy your life you’ve been able to accept and overcome. I on the other shall have to accept the fact that I will no longer receive compassionate treatment for my pain. Then fight every day to overcome my disabilities and my pain.

Jill Slovacek, I am not sure what you are asking of me. Who is paying me?? No one, and what on earth would I be paid for? What is wrong with me?? What are you talking about with your questions? They don’t make any sense. I am doing much better now. Very little pain. Many helpful treatments and mental adjustments. Please read my fully story on my website or get my book and you will understand. Check it out at http://www.tomseamancoaching.com.

Rich M

This is the most accurate explanation of how I and, I suspect, many others deal with our conditions. Thank you for this well-written and inspiring piece. I plan on sharing it with many others.

RhiRhiG

Well said!

jill slovacek

No, no NO NO NO WHAT IS WRONG WITH YOU ? ! Oh, so you were great athlete? So what move over, I was better ! I will not accept my pain, I have never had a problem with medication. No, sir, No, my first clue was how long your letter was. Yet, I read it twice, that is three times. No. Fight on and who is paying you?

Maureen M.

HI Tom, Excellent, encouraging writing!! Thank you!
I am 26 years into my life with Chronic Pain which eventually caused me to become disabled 14 yrs. ago.
Like you I was a very active person with a very full life (had a family, worked full time as a nurse, active social life) and therefore I struggled for many years with my pain issues until I accepted the fact that I am not going to get better (physically).
That is when I began the long journey of figuring out ‘HOW’ to live better ’emotionally’ with this new life, and to learn to make adjustments along the years. I’m consistently learning more and readjusting to try to make life easier for me.
I’ve come a long way yet…none of it is easy. We need incredible inner strength to ‘keep on keepin’ on’! One hour at a time, one day at a time.
I am proud of you to see that you have re-fashioned and replaced your old life from being so physically active to doing all that you now do (in the descriptive paragraph of all that you now do). Kudos to you!! You are an inspiration!