The Roller Coaster – Living with Chronic Pain

The Roller Coaster – Living with Chronic Pain

By Ellen Lenox Smith.

Each day living with chronic pain, is not always like the day before. Many of us can tell, as soon as we awaken, which direction the day is heading. On the days one feels clear headed, we begin that day with a smile. On the days that we are in a flare, it is difficult to determine where the strength is going to come from to get out of that bed, think, feel and act with purpose in life. However, managing each day with a degree of pain, perhaps anxiety and yes, sometimes despair, is something we have to learn to cope with. And without attempting to address this, we may very well find ourselves overwhelmed with our lives controlled by our condition.

Ellen Lenox Smith

I happen to deal with two conditions. One is called sarcoidosis, which presently is causing granulomas and enlarged lymph nodes in the lungs and can potentially spread at anytime. The other condition is called Ehlers-Danlos Syndrome, a connective tissue defect that allows movement of the bones, called subluxations, to occur easily. The pain is not pleasant and many times comes on seemingly out of nowhere, often from such simple and basic tasks as reaching for a box on a high shelf or, twisting the wrong way, getting hugged, bending without using the knees, lifting more than five pounds, or just doing anything repetitive can cause the frame to shift.  When things shift into this negative mode, along with it comes pain, insecurity, heartbreak, disappointment, and awareness that this will not suddenly be over, but will take time to settle down often requiring extra physical therapy treatment sessions, along with allowing time for the added inflammation to calm down.

When I have to deal with the more unpleasant days, I not only fight the physical discomfort but also the emotions that can quickly slip back to a rather negative mode feeling like this will never be over. When I get a flare up, the body becomes inflamed and the damage continues to happen until things calm down. This process can take anywhere from forty-eight hours to a few weeks, or more. The mystery of not knowing how long you have to go through this does not make acceptance easy.

Emotional Damage from living with chronic pain

I don’t know about you, but when you have all these fluctuations in your physical condition, which can impact your social life, your emotional state and your overall sense of well being. The psychological challenge can prove intense and draining as you never know how much better you can get.  There starts to be evidence of emotional damage.  I try so hard to remain positive, to do what needs to be done to correct the issues, including being careful with what I eat and getting to manual PT to correct the positioning of the body but that is not always enough and often doesn’t feel like it works fast enough. As human being, discouragement and disillusionment are part of the human experience, these feeling are common to all of humanity but for those suffering chronic pain and or disabling conditions, these feelings can at times prove so intense and insurmountable that they can penetrate one’s very soul and this is frightening. So, when the emotions creep into the soul I question if this is a return to my worse state, if this might lead to another surgery, or wondering how long I will be in this less functional and painful state.  I often find I become so disappointed in myself for allowing these emotions to take hold of me like this. But when we are physically weaker, hurting more and feeling discouraged, we have the human reaction that weakens our strength and soul.  I have found, now having to have coped with twenty-four surgeries, that the emotional reservoir that I had when healthy and was able to easily tap, has been somewhat drained. The emotional strength to confront the challenges of two chronic incurable conditions is not always available. I can go from feeling strong, positive and happy to becoming scared and in a fog emotionally.

I try hard to find things that bring a smile to my face to lighten the feelings that creep in. A simple conversation with someone that cares about me, hugging and petting my service dog, admitting and discussing my concerns with my husband, taking a ride in the car, exercising when possible, writing and expressing my emotions or taking on a form of advocacy and especially reaching out to someone else also struggling with life issues are some examples that can work for me. If I can find a way to fill that void I feel, it goes a long way to help me figure out how to deal with the emotions that are trying to penetrate or invade my soul.

I hope that you are able to find outlets that help you manage your emotions in a way that allows you to feel a sense of more control of your life. We may not always be capable of managing our physical symptoms but we all need a plan to find the positive in life. Being grateful for the good things still in your life can have a positive impact and can help lead to more hope.  It also helps to appreciate those better days or even moments, along with helping to work to get control back on your emotions. May you find the strength to try to remain as positive as you can and live life with hope.

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

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Steven

THANK YOU ELLEN! What lift us up. Still regretably, I cannot make it on 90 mme. 149 and dropping. Family blames me for not willing to do whatever. Yoga, ect. Even tried an unpaid for stimulator. 20,000. Just makes money for doctor and manfacturer. I have done it all save stem cells. All just poppycock!!! Still all my fault for a 20 year hereditary defect. God save us all!!!

Jeffrey Sampson

Dorothy you didn’t say which State or part of the country your living in. I have also been dealing with chronic pain and arthritis, epilepsy, doctors also say I have fibro it has been very difficult for me as a man, former Army soldier, business owner amongst the same moral values as you you don’t complain about pain or anything else for that matter you just push through your day and hold your head up. Then a severe accident got me at work, I fell 30 feet off a roof the amount of injuries are to long to list besides the accident forced me to face all medical problems head on or die. Over the years I cannot even begin to think of how many times the pain has drove me to nearly take my own life and have been very angry with God many times for not letting me die when I fell truth is today I am happy to be alive most days and like you for several years I was alone even having seven siblings hasn’t been any help I don’t hear from family unless they want something from me. I hope me sharing some of my own story shows you your never alone many of us share your problems. If I knew where you are we may live close enough or know someone that is to help you. Please share where your located do not post your address on any blog but give us a general location so those of with a heart that will and does care can help you asap!

C. Gail Lesko

Dorothy, I just read your post. I’m a Protestant Pastor, and would be glad to get you in contact with congregations in your area who would be glad to welcome you and encourage you! I hope that this is allowed here on this messaging blog, but please feel free to contact me at: infogail@yahoo.com I have experienced chronic pain since 1983 when an emergency surgery did not go well. I will definitely lift you in prayer!

Lynn

Dorothy, I know what you mean. I wished that you lived close by so that I could take you to church with me. Hang in there girls. Trust me, I understand what you are going through. With chronic pain, isolation is a issue with people that are single.

CathyM

Thanks so much for this, Ellen! It’s especially true around the holidays, when extra social and physical requests build up. I have found that making things – crafts or art, no matter how simple, can lift my spirits and also remind me that I’m not useless. And journaling helps me to limit my whining to others, which doesn’t help anyone’s mood. Most of my friends have challenges, too, so I don’t want to drag at them. Also humor – when I can bring a laugh or smile to someone (and myself), I consider that a victory. So – even when you can only do a little something, it’s worth trying to create. There are online painting/photo programs (like PicMonkey) where you can do much with a few mouse clicks.

There are creative outlets especially for those who have disabilities, and I wanted to share a new one:

https://medium.com/the-operating-system/and-then-allowing-the-evolution-of-the-in-corpore-sano-project-8dc38dcbab22

This will be a print and an online series, and I have two poems in the first part – I was especially pleased to be able to reach out to fellow suffers with my poetry! Thanks again for your post – I will share it with the disabled community over at Daily KOS.

Maureen Muck

Ellen,
Every time you post I identify with your message, and I feel validated. Our conditions aren’t the same, but the side effects are.
Thank you. 😊

Martha

Ellen, beautifully expressed & written. I would like to say more but it hurts to even text this much. Thank you very much for all you do. I think we, CPPs, “get” what it physically cost you to sit and write this, so succinctly.
Wishing everyone moments of unexpected joy & happiness this holiday season!

Virginia

Bless you, Ellen, for your sweet, and caring heart, and strong spirit. Thank you for writing out in words the things I have a hard time admitting to myself.
I have a handful of diseases, all of which have no cure. I also have at least one more they’ve not found what it is. Going on now for over three years, the usual run around tests negative, specialists, meds, PT, you name it, I’ve been there, except second opinions of which I’m in the process of doing now.
Read an article by the way, in California they are going to try to implement a tax of 1¢per mg on opioids, for the addiction centers and to help the children and others, due to the high cost and the high volume of people who are addicted to especially prescription Fentanyl. I live in Orange County California so this is supposed to be an area of great problems in addictions. I knew they are coming up with ways to make more money on opioids.
Thank you again, Ellen, for being a shining light to us out here, and for making it real. Many times it seems like it’s all in the head, but after reading your paper, it helps me to see that it’s ok to not be ok for a day. It’s ok that I really don’t feel up to…… right now with my family, friends, going to church; and no, don’t put me on the prayer list, please! Too many questions.
When I cancel due to not doing good, and they push for details I’m reluctant to give, I do a diversion tactic. I ask them if they knew what would happen if they were to drink a gallon of prune juice in an hour. Then I keep pressing them until they give me the answer to my question. It’s worked 100% for me.
May the Lord bless you and keep you safe.

Dorothy

What do you do with no one? My husband passed away and I moved to be with long time”friends” . HUGE mistake. No one visits. No one calls. If I call saying the pain is terrible, they reply I understand. Then never see if I was able to get out of bed, eat or any other necessities. I cannot drive. I have no other friends here.
Pain is hard enough to deal with when you at least have a partner. With no one and nothing but a phone to communicate all with strangers. It’s impossible many days to find a bright spot and my faith gets shaky. I have had fibro for about 50 years now and back issues so long I dont remember when they began. I grew up thinking you dont complain, but just push through any pain. About 18 years ago, after assorted other meds, I went on fetanyl patches with slowly increased dosages. Now i was tapered, told to try CBD which I did, and promptly fired from pain management for THC which I never did. Their paper on pee test showed me as stoned, it was so high. And funny part was I hadn’t even used the CBD for several weeks!
But there is no one to talk to, to commiserate, to give a hug even that bad day pain management said never return. I am so desperate for human touch and face to face contact. With Christmas around the corner I asked could someone take me to Church. ANY church. No one has answered. My heart hurts most days as much as my body.

Jody Hoffman

I have been dealing with a terminal lung disease for 8 years that was misdiagnosed until now. I have asbestiosis it causes my lungs to literally fall apart, my lungs look like swiss cheese and it causes extreme pain & increasing shortness of breath, my liver is full of innumerable subcentimeter hypodensities from the asbestos fibers working their way out of my liver, I have constant inflammation and back pain from this. I was prescribed 36mg hydromorphone for the pain and refractory shortness of breath & 20mgs oxycodone as needed for years I was a productive, active person I wasn’t able to work but I was able to do things at home and leave the house to shop and see my family. In 2016 my long time doctor retired and I went to a doctor that was part of his staff, she immediately cut off the oxycodone with no warning or taper & 2 weeks later cut the hydromorphone in half without a taper, I became really sick from the withdrawal & she didn’t care. I finally got over the withdrawal but since that time my CT scans are showing that my lungs have significant amount of changes for the worst I have to now use supplemental oxygen most of the time & I’m not a functioning person anymore. I finally went to her and told her that I needed to increase my hydromorphone by 1 pill a day & she refused despite the fact that I told her that the CDC guidelines allow me to take up to 90mme a day. She got really mad because I was informed & knew what I was talking about, she finally admitted that she doesn’t feel like increasing my dosage. I have never violated the drug contract with the clinic in 8 years & that simply doesn’t matter to anyone. How are we supposed to get past this? I am now in the process of finding a new pulmonary doctor and general doctor that will work with me and hopefully help me with this.