Making Sense of Life with Chronic Pain

Making Sense of Life with Chronic Pain

We all need to attempt to live with a sense of purpose. We also need to feel that our lives have meaning and value when one is confronted with chronic pain. Unfortunately, meaning, purpose and value can easily be extinguished and often very hard to regain. It then becomes a struggle to figure out just where and how one fits in. So many things that meant the world to you can suddenly no longer be within your capacity to accomplish. Normal daily activities such as going to work, being able to drive, visiting a friend, working out, reading, and shopping may suddenly no longer be possible to engage. That is why one must readjust to these very difficult changes. Initially, this can prove overwhelming.

Ellen Lenox Smith

Anyone living with chronic pain knows what it is like to suddenly feel like life is being shut down around you. It is heartbreaking, lonely, and can be frightening and overwhelming. It is very normal when confronted with these life altering circumstances to question who you are now supposed to be when so much of what your normal daily life was is taken away. Living with both Ehlers-Danlos and Sarcoidosis, I have had to learn to adjust to losing so much but somehow still finding how to live this new life. At one point, I spent four years in a wheelchair. I can no longer lift more than five pounds safely without damage, which has been especially heartbreaking when grandchildren entered my life. I am now limited as to what foods and medications that I can metabolize, and I have felt tremendous isolation and loss recuperating from now twenty-four surgeries. Coping with all these issues has created the biggest challenges in my life but I have learned ways to work on move on, despite all these obstacles.

What I have learned that I hope might help you with these struggles:

  • When life first throws these changes at you, allow yourself time to mourn your losses but also remember to not get stuck there forever for at some point, you need to move forward
  • Work to identify a good medical team to help you improve the quality of life
  • Work to find compatible medication or alternative treatments to help you with pain relief.
  • Try to stay engaged with friends and family but also understand there will be some losses of those you so cared about. We all find that some relationships do change. Sometimes, it is due to judgement, lack of efforts to understand what you are facing or also just being unable to do what you could do before your medical issues placed new limits on your capacity to engage in activities you once shared and enjoyed.
  • If you can connect, find a support group either online or in person to be able to have safe and understanding connections with people that can help you learn how to advocate for yourself and Attempt to develop a positive perspective despite your altered capacities.
  • Seek new activities you can enjoy doing. Many others are on a similar journey of changes. So consider trying to find ways to assist others as they face some of the same challenges you confront. You will find we are not alone at all and many are also struggling with life challenges. Paying it forward can be a therapeutic process. This process may provide some value and meaning to the pain and suffering a chronic pain patient has suffered. It also is beneficial to our wellbeing. Learn the beauty and satisfaction of paying it forward. We are all at our best when we focus on our common humanity. Paying it forward affords us this opportunity.
  • And most importantly, remember that this is your life, this is the only one you get to live, so no matter how frustrating, limiting, painful and frightening yours might be, still try to hold on to hope and purpose to have meaning in your life.

May Life Be Kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Barbara

I’m really new to this sometimes so tired of explaining it I don’t even understand it myself after my back was broke years l it was compression fractures . Years later now the say I have fibro and other stuff my knees they were giving shots in it and my upper hip on both sides my neck also but I quit seeing that doctor cuz once in awhile he couldn’t say things like I think you’re a might be getting rid of it but he wouldn’t finish what he was saying he had down to one oxycodone once a day for a long time cuz you said he is weaning me off of it he told me long time ago but he don’t like pills he tried Lyrica and Cymbalta bad had weird dreams and it’s kept me he said we have to take you up on that I’m home now with my other doctor Gabapentin 300 md a day and my nerve medicine and blood pressure med its helping some but i know i need a higher dose I’m just tired of not being able to do anything and it’s right in body do it for me I’m kind of laying here and not enjoy my life I used to love to go fishing I’m just riding around people used to ask me all the time they don’t ask me anymore but it’s no use because I say I can’t does it mean too much pain and I’m just so sick of it I got an appointment with a neurologist and rheumatologist but hopefully they can help I don’t know I don’t even like leaving my home anymore it takes a lot for me to do that and get ready to do that I don’t know what else to do except say something here about it maybe somebody has answers I know some people would probably going through the same thing or even worse my knees burns my legs bums but don’t have no medicine in me my legs and body will jerk and draw up I’m getting kind of sick at about it it’s been awhile tired I’ve been taking vitamin D with zinc D3 if anybody got anything to tell me I appreciate it
Barb

Jill

Ellen,, I love that you’re so positive and always enjoy your articles and try to glean some wisdom from them. But you have a supportive partner and that makes a difference.
To Maureen M. I agree with your almost all your posting and think we have a lot in common. If you’re open to the idea send me a Hello to mccoyjill2004@yahoo.com

Gail Honadle

Words have meanings, Chronic Pain is NOT a medical disease, it’s a temporary medical condition. What last forever is a MEDICAL DISEASE IP and must be treated as A MEDICAL DISEASE or the doctor is committing Malpractice.

Intractable pain, also known as Intractable Pain Disease or IP, is a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures.

Chronic pain is often defined as any pain lasting more than 12 weeks. … Chronic pain persists—often for months or even longer. Chronic pain may arise from an initial injury, such as a back sprain, or there may be an ongoing cause, such as illness. However, there may also be no clear cause.

Acute pain is a type of pain that typically lasts less than 3 to 6 months, or pain that is directly related to soft tissue damage such as a sprained ankle or a paper cut. … Acute pain is distinct from chronic pain and is relatively more sharp and severe.

Toni

I appreciated this article a lot and did and do most of these things but for me, Im having a heck of a time as my diseases progress b/c when I move a disc, there is no dr that gives a damn even as it sits on a nerve. I have 4 severely damaged discs S1-L3, DDD, Osteo in more areas than I can count, Fibro & Peripheral Neuropathy. So I know that as I get worse, there is no hope for pain relief in my state. They try to give you all these awful nerve drugs with huge side effects most of which make you gain weight which hurts your pain even more when the real pain med that would actually lower my bp is not allowed without trying all those awful side effect meds first. It should be my choice! This thought makes a life very very hard. To stay positive, well that is nearly impossible but I do find my faith, family and music helps me a lot. My dog plays a huge role as well. I joined support groups and even ran one, volunteered at a local food bank but then my ability to drive is going away and these things gave me way more pain which has slowly broken my heart. I cant garden now or even go on my walks with my daughter anymore. I was hit by a drunk driver when I was 19 years old and he drove off as I laid there. I am blessed to be a live but after living in chronic pain for 32 years, well its very hard especially now with the way our medical system doesnt care at. This life is not for the weak and I really appreciated your article. Joni Earickson Tada has some great books that helped me as well. I pray for everyone who has to live this life. It is very difficult to live and to have to watch.

Maureen M.

Thank you Ellen. Another great writing of yours. Once I worked hard for many years on accepting my Intractable Chronic Spine related pain/conditions and Systemic Lupus and limitations, I did find new ways to ways to re-invent and life my life accordingly. BUT… The one issue I continue to work on with my Energy Therapist is accepting how family and friends relate to me…and their lack of attempt to acknowledge, accept or even show empathy toward how and I have to live with. They continue to treat me as if I am normal and ignore that I have these diseases. I live alone and need their support so desparately but, to no avail. It hurts and saddens me deeply. While I can intellectualize their ways…I remain a human being who has needs and feelings. It’s a tough hurdle to get over, even though I do know they love and care about me. I find myself withdrawing from them, which is also not easy, but to save myself from the emotional effects of constant disappointment.
Such is life…. at least I know for sure that God is always beside me 🙂
Keep positive and keep smiling. Maureen M.

Thank you Ellen. My husband and I just moved across our state of Michigan to be near our children and grandkids. I had shingles in 2015 and developed Postherpetic Neuralgia. I have dealt with chronic pain since. A number of meds,PT, several physicians including PM. Now going to try to find new docs in a new community. Still mourning the loss of who I used to be, what I used to do. But your words help. And sites like this. Jeaneen

kelly

“Work to identify a good medical team to help you improve the quality of life
Work to find compatible medication or alternative treatments to help you with pain relief.”

Hey, great ideas! Too bad they’re impossible these days. I was for decades ok with the pain relief I was getting. Now hysterical morons have made that impossible for me & millions of others. There is no such thing any more as a “good medical team” that will help us. I realize this was written with the best of intentions, but a bit more adherence to the realities of the day would be even more helpful.

Margret Hunter

Nicely written and great advice. I think you hit on some really key points: maintaining important social relationships, surrounding yourself with a great medical support team, and maintaining a positive outlook (as much as possible). Wishing you the best (from another semi-isolated chronic pain sufferer trying to make the best of my situation).

Duane B. Michaels

Hi ! My name is Duane Michaels. I’m sixty years old and have done extremely heavy work all my life at home and through employment. I’m not feeling well enough to write my biography today. I’ve survived stage four cancer since 2002, an excruciatingly painful movement/neurological disorder, a tractor trailer accident that’s permanently caused intractable pain, eleven surgeries, neuropathic pain; and need a knee replacement among various other injuries throughout my life.

I live on a cocktail of Lyrica, Valium, Oxycodone and my doctors have recommended medicinal use of marijuana if available. Without the medication I would not function and I’m barely maintaining any sense of a normal life since the tractor trailer accident in 2010. As my health deteriorates year after year everyone around me doesn’t understand how I can be so strong yet so fragile and sick. Often I push through, medicate, get what needs to be done. I do what I do to help me not live in poverty and it’s automatically construed as there’s nothing wrong with me and this has alienated me from any social life, friends and work. After all if I can push a lawnmower or ride a motorcycle then it’s assumed I should be able to work, support myself, take care of a home and myself too !

I don’t only suffer from intractable pain. I also constantly live with the side affects of the medication and then the withdrawal symptoms when I have to stop the medication. It’s a constant roller coaster ride that’s slowly wearing me down.

Until one lives every minute of their life in pain and agony, it’s hard for people to empathize and be supportive. I pray that in time those who have turned their cheeks the other way and ignored or criticized those of us who live this horribly dreadful life, will eventually understand that the need for pain management is real and the doctors need to be the judge of what’s best for each patient on an individual basis !

Respectfully yours,
Duane Michaels

Virginia

This is the only life we get to live in this life, but our next life holds am eternity of a perfect life with no pain or limitations of any kind. And the best part is it isn’t that much farther in the future. It is this next life and the promises it holds, with our Creator, for eternity which keeps me going thru this chronic pain. We who have this hope of a better future can look forward to a brighter day ahead and know this too shall pass and all things work out for the good to those who love God and who are the called to His purpose. This world and all the living things in it are under a curse, and some of us have a harder road to follow than others, but if we just look to the Lord and trust His word, believe in Jesus Christ and Who He is and what He has done for you and me, then we’ve got nothing to lose. Except our sorry way of life we have now. Right? Just saying. Don’t look at others who say they are Christians. They will cause you to hate God. Just believe in Jesus. People are people and they all lie. God does not lie. He loves you. There is a better life. It’s not this one. Just hang in there. It’s coming. Jesus is coming. I’m ready. Are you?

Gary Raymond

Withholding effective pain medication is like starving a baby. Withholding effective pain medication is the handiwork of sadomasochists.