Living “My New Normal” Life With Chronic Pain – That I Don’t Want Defining Me

Living “My New Normal” Life With Chronic Pain – That I Don’t Want Defining Me

By Ellen Smith.

For those of us who live with chronic pain, we must somehow find a way to live the life we have been given, despite the often overwhelming challenges we confront on a daily basis. Those suffering with chronic pain often face a lifelong challenge knowing that medical science may not find effective treatments for their condition in their lifetime. Chronic pain patients must accept their altered life circumstances and then adapt by searching for mechanisms to find purpose and meaning and yes, fulfillment in their lives. I am guessing we share that feeling that if we don’t feel like our life matters, it is hard to cope. So, I chose to search for what will work for me and not hurt me, no matter how many doors are closed in my face.

Ellen Smith

Diagnosed with two incurable conditions, Ehlers-Danlos Syndrome and Sarcoidosis, I had to figure out how to move forward despite the horrors that were my new reality.  How would I be able to live like this? I was losing my ability to continue to teach, to be a master swimmer, a high school swim coach, walking any distance, walking on any uneven ground, including the beach sand that I loved, lifting anything more than five pounds, digging and planting in our organic garden, twisting, turning, for examples. It was both horrifying and heartbreaking to learn about the possible future with these conditions. I became overwhelmed for this was pushing too many buttons. Eventually, I found that turning to writing and advocating, created an outlet for my emotions and my intellectual needs. I now have developed new tools to cope with the dramatic changes in my life circumstances. My goal was to learn how return to being the happy, productive person I loved and wanted to be.

I eventually learned to live by four rules:

  • All people have something they have to learn to cope with and this just happens to be the “gift” I was given.

Really opening my eyes to others lives, I saw divorce, deaths, suffering, loss of a child, damage to homes and lives from hurricanes, earthquakes, fires and tornadoes, terminal conditions, etc. and realized this just was what I had to learn to cope with but was not alone. No one gets through this life with no burdens. And, I realized I was actually lucky when comparing myself to others. I had a family, a happy marriage, loved life and had passion in what I chose to take on.

  • I would waste my time if I got stuck on “why me”. People really don’t want to be around whiners, so that act had to be cleaned up quickly or I stood the chance of losing the friends I cared about.

I have learned not to share with every person I meet. When a friend sincerely wants to know the truth, then I open up. But for the others, I have learned to joke that there is no point of complaining since “nobody wants to hear it”! And it’s true – since everyone is coping with something, you have to find the right person that really wants to listen to you. Having chronic issues creates judgement from others and can get very isolating. So we need to be careful to hold on the those that truly care and try not to burn them out with our burdens.

  • I never stop being a parent, so although my four sons are now grown and out of the home, they are still observing how I handle this and each of them has a 50% chance of having EDS – so I need to be strong and continue to be a positive parent model.

I decided that I want my children, grandchildren and friends to remember my smile and passion for life instead of the gory details of what I have to face. I want them to remember my accomplishments, not my sorrows. My Dad was my role model – he kept that smile and interest in others and life in general with him at all times despite his battle with cancer. He suffered from prostate cancer, lung cancer, kidney cancer and then for seventeen months, suffered with bone cancer before passing. The night he passed, he had been joking with dear friends in the retirement home he lived in. He made us comfortable being around him instead of scaring us away and I so value and turn to  the lessons he was showing us. This is what I hope to leave for my children, too. I even applied what I learned from observing him when I spent about four years in and out of a wheelchair. I realized it made people uncomfortable to see me like that so learned to lighten the air when around them. Don’t get me wrong, I hated being in that situation, but it was the life I had to endure.

  • This is it – the only life I get to live so I can choose to be miserable or move forward despite this. Happiness is an attitude – we either make ourselves miserable or happy and strong. The amount of work is the same! I choose life!

I found out quickly that when I got rid of the “why me attitude” and “this isn’t fair”, I found a way to again enjoy my life, find acceptance and vowed to keep fighting and not stop looking for answers. Even if what I find out isn’t going to change my course, due to my age and damage already done from a late diagnosis, it is satisfying to know it might improve the next generations future, coping with what I face. It is heartbreaking to have your “normal” change in life, but we still need to live that life the best way we are able. I do, however, find it interesting how a smile can also be misunderstood and judged by others. Many assume that if you are happy and smile, then all must be fine. I have been shocked myself to hear others stories of what they carry with them daily and still find a way to be pleasant, grateful and caring about others. An example of this for me was when a home care nurse came the first time after my 24th surgery recently and in she arrived with this warm smile, filled with compassion for me. As we talked, I found out she had lost her only child to a car accident followed by the loss of her marriage brought on by the grief. She eventually remarried to twenty-eight days later losing him to a heart attack. Here she is now, taking on the care of her elderly mother and working as a home care nurse, giving to others. I so respect that courage and I would rather be misinterpreted as being fine than seen as that poor lost soul that never was able to find peace with life.

I’ve learned to start each day with taking a moment to be silent and run through my mind, all I am grateful for. Some things I think of are very simple but important for me – waking up each day with my husband and service dog in my life, using my legs to walk, using my arms, healing successfully from my now twenty-four surgeries, having our four sons, four daughter in laws, and four grandchildren in my life along with family and friends, new and old. It is a wonderful practice to try – find what you can be grateful for. I realize that I have more than many ever get to experience, despite my conditions, so I need to remember that daily and be grateful.

This process of acceptance and how to live this life despite the horrors I have to go through, took a good year to establish and it has constantly been enriched by new ideas. Give it a try. Get your diagnosis, get your pain under control and then find what you can be grateful for. You can do this, but it is requires hard work and discipline. There will be days you slip backwards  emotionally and physically. This is so heartbreaking and feels so unfair as you try to be positive and make the best of a difficult situation. Don’t beat yourself up when that hits but also don’t allow yourself to stay in that mode. I keep reminding myself that my husband has chosen to stay by my side and help me with the ins and outs of living with two conditions, but I do feel I have a responsibility to be as pleasant as I can be for his sake, too. Like me, he didn’t ask to have to be part of this change to our lives either.

I miss the life I was living. I miss all that has been taken away from me, but I am still here to live life. Try to live your life with passion and that smile the best you can and know you are not alone trying to cope. It is the biggest challenge you may have to take on, but let’s hope that you, too, find your peace with what you have to face. You are on a difficult journey with pain, but try to not let it define you.

Ellen Lenox Smith is Co-Director for US Pain Foundation Cannabis Advocacy and an RIPAC board member who frequently contributes to the National Pain Report.

She is the author of: It Hurts Like Hell!: I Live With Pain – And Have a Good Life, Anyway

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Authored by: Ellen Lenox Smith

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Elizabeth Isaminger

Thank you for this article.

Gregory John Mooneyhan

This was an amazing article. It was very inspiring. This is the situation most of us face everyday. The main problem I have is, why do we have to say “This is what I have to deal with”? Obviously, our symptoms and diseases will never subside to a level where we are comfortable 24/7 But I can’t help but think that at some point, the government will take away the things we need to function on a daily basis. The bad seeds are ruining it for all of us who suffer everyday. Without the medications I take to function everyday, all I have are my coping mechanisms. Is that enough? Probably not. You can try to use your coping skills but if you are unable to get out of bed everyday how good are we expected to cope with day to day life??

Sarah Hull

Beautifully written thank you!

Maureen M.

Ellen, Thank you! Yours is a good outline of the meaning of accepting the life we have, although it is a great struggle.
For many years I was chasing the ‘cure’ to my intractable spine pain, RSD, and CFS.
I had surgery after surgery, many hours of on/off PT, sitting in therapists offices processing it all, saw a ton of doctors etc….exhausting!
About 4 yrs ago I gave up and began turning my energy toward taking full charge of my body and stop listening to the doctors who know little about it, researching my physical complaints, letting go of the years of grieving and sadness for the life I once had,
and changed the course of my journey toward knowledge and acceptance. NOT EASY!
And not to say that I don’t have many a tough day accepting it… because I surely do,
but acceptance of my diseased body and this life in pain that I have has greatly helped me psychologically and how I ought to live this frustrating life.
We have one life… its’ up to us to make the best of it.

Jill

Thanks for you wonderfully positive article. I try my best to keep my misery under control and focus on the good. I think living alone makes life a bit harder. I was just thinking how much I miss having an intelligent conversation with someone other than my kids,when I checked NPR and saw your writing. Words to live by!!

Sandra

Thank

Jenny Picciotto

Well said! Written with the wisdom born of hard won experience. You have shared your road map through the difficult terrain of living with intractable pain with compassion.

Susan Burk

Ellen I absolutely loved your article so much! You have the most amazing attitude and I strive to be more like you! I have struggled with chronic pain for 25 yrs and instead of accepting it, I’m constantly fighting it and having pity parties with that “why me mentality!” This does nothing but drag me down and keep me stuck in my depression. You are a wonderful role model and I am going to work to change my attitude to be more like you! I also ordered your book and look forward to reading it! Thanks again for your wonderful post❤️

Dearest Ellen,
Thank you so sweetly for sharing your heartfelt story. You and your beautiful courage are an answer to one of my prayers. My faith and the fight to save a little girl’s life is what keeps me going. May God continue to bless you and give you miracles. I surely still believe in them.
Respectfully,
Terri James

Anonymous

I loved reading how the author views and lives her life. Very inspiring. I am,
however, stuck. This advice does not seem to apply to the person with intractable pain. “Get your pain under control and then find what you can be grateful for”. Many of us cannot get our pain under control, unfortunately, and in today’s regulatory climate aren’t likely to. I have not been able to for the last 6 years. I need to know how to live well in constant pain. Is there a way? How do I live well from a recliner or bed? I haven’t found how to yet. I’m sorry to put a damper on this otherwise positive article. I bought the book anyway, hoping to become inspired. I’m concerned that those of us with intractable, severe pain may feel like we’re coming up short because we can’t achieve what the author has.

Heather

This was good timing. I’m struggling because I lack support from doctors for one of my health issues. I’m working on getting support but I’ve been abused by the doctors who were seeing me and my records don’t reflect the truth – they make at least one harmful statement which is following me as I try to get help for other issues (Apparently, I’m a “prednisone addict.” My therapist who knows me thinks this is absurd. I walked out on an arrogant doctor, so his colleagues made assumptions and put them in my medical record. It also hints that I’m a hypochondriac about having adult-onset food allergies – despite labwork and in-office testing by credentialed allergists).

I am dealing with overwhelming grief and fear. And I have a hard time not talking about what I’m going through. (I was denied care during a breathing-related crisis by that practice I spoke of above).

I will have to talk to a new doctor, hope he’ll “believe me.” Regardless of whether or not I’m believed, I live with this reality and it’s getting harder for me to take care of myself. I’m overwhelmed and now depressed (doctor-assisted depression) as I call it. This has been occurring over the course of 7 months now, so I feel pre-occupied and distressed. I am praying for a positive outcome but yesterday was de-railed because my appointment got re-scheduled with someone other than my preferred doctor. I’ve asked my allergist’s office to help advocate for me, but they can do nothing because my allergist is currently out of his office.

I lost sleep, which I realized is terribly counter-productive. I’m experiencing emotions of deep sadness and apprehension — even fear, when it comes to seeing a new doctor. It was always hard to have to re-tell my complex health issues/medications/etc. “all over again.” Fatigue and pain disrupt my ability to communicate at appointments.

I will work on gratitude and putting my troubles in perspective. I’m trying to problem-solve which I sometimes do verbally by discussing with friends… but it’s something I want to discontinue.

The question is, how do you find connections that you feel are genuine…? I sometimes feel resentful trying to keep the brave face up for my “friends.” Chronic illness by itself is so isolating. I often miss being “honest.” It’s something I’ve valued all my life.

Barbara

I had the pleasure of meeting Ellen at the 2015 EDS Conference in Baltimore. She was such an inspiration!
I too was diagnosed late (at age 55), and additionally have ME/chronic fatigue, fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and a host of other problems. Two years after my EDS diagnosis my husband found out he had stage 4 kidney cancer. He died less than 3 months later.
It’s been tough, because I’m dealing with chronic pain AND chronic exhaustion. Due to the government “witch hunt” on opioids, my pain medication was taken away in May of 2016.
Thankfully, Virginia just passed a law allowing the use of cannabis oil for any medical condition your doctor feels could benefit from it. It won’t be available until late 2019 (according to the state medical board website), but I now look to the future with hope. And this is the first step towards full MM legalization in Virginia.
It can be very difficult to stay positive when you’re faced with multiple health problems and you can’t get the medical care you need to have some quality of life.
Since our government has declared war on pain medication, and in so doing, declared war on chronic pain patients, the least they could do is legalize medical marijuana at the federal level. Just my opinion…

Ellen

Ellen, your article is inspirational. I, too, am working on my “new normal”. I try to find “joyous moments” every day and be cheerful (with trigeminal neuralgia the major attacks are sometimes hard to hide). I must be doing something right because of all the people who think I am “fine”. I wish you well and it makes me happy to hear about all the support and joys in your life. It is so difficult to stay away from “why me” and “it’s not fair” but with a an incurable chronic pain disease we need to. Thank you. Ellen Falvey

Lori T.

Great post Ellen, you are so right on all the points in your article. I am so happy you have found peace through the the pain. Keep it up, you would probably even more surprised that many others are trying to achieve what you have been able to do. Your positivity about unpleasant things in your life is keeping your conditions from getting much worse and yes, you are modeling the true human experience. Nobody escapes the burdens life puts upon us. You make it look so easy. Hats off to you girl. May your life continue to be blessed.

Kristen Kennedy

Hi Ellen,I read the NPR daily but only comment every now and than.First I want to say Thank You for sharing with us.I live in Chronic pain like many others and feel greatful to have a wonderful Dr who has helped me over the last years manage my chronic pain here in R.I.,I also have a Wonderful BF who has went above and beyond to help me even though he can’t be here as much due to his job .My Adult Children are wonderful but have their own lives and I understand.Your post is what really opened my eyes this morning and you send a very powerful message that I needed to hear.I have made some observations since living with Chronic pain that yes ,people I have called my Friends have pulled away.I guess they just couldn’t deal with me anymore.Looking back I think I was to self absorbed.Now just a few weeks ago I was diagnosed with thyroid Cancer!The first thing that went through my mind was oh great im a chronic pain patient but now I’m a cancer patient as well.I am going in for Surgery next week and have done some serious soul searching.I am focusing on living rather than dying.No matter how much pain I wake up in I Thank god for another day! I also make it a point to pick up the phone everyday and check on the few friends I have left.I have been focusing the attention away from myself and would much rather hear about them.I do have days like many that can’t get out of bed but on my lower pain days I make myself go out even if it’s in the yard to take in the Nature.I still have aways to go but I am trying to think positive.I do miss the life I once had but I know now I have to make the best of each and everyday.Your post is exactly what I needed to hear this morning because I will admit I woke up in so much pain yes even after taking my pain med,but I felt myself falling back into self pitty once again that was until I read your post.Wish you all the Best and Thank you for the powerful message you send,you have inspired me to regroup my thoughts this morning!