Can I Find a Way to Repeat that Good Day with My Chronic Pain?

Can I Find a Way to Repeat that Good Day with My Chronic Pain?

By Ellen Lenox Smith.

What a gift it is to wake up to a day when your body is cooperating! Everything seems brighter, safer and with more meaning, hope and positive energy. In fact, I find it so exciting that I tend to rapidly let my mind believe that this is my life returning back to more normalcy. I bask in the moment and unfortunately, my mind often attempts to trick me into feeling that this feeling may be permanent. Patients with chronic conditions are, by the very nature of their situation, forced to keep the dreams of normalcy in check.  I feel positive, think about the future and dreams………and then I awaken to the next day, slipping backwards again and my heart breaks. Those with chronic painful and or debilitating conditions must find tools to overcome the reality of the emotional suffering which accompanies the disappointment of relapse or this very dynamic will serve to seriously compromise their health even further.

Living with chronic pain is such a challenge. First I find myself trying to figure out initially why this is happening to me to eventually learning to accept that this is the life I have to learn to live with. Along with accepting this new life you have to somehow find peace with having to let go of those things that are just not possible anymore. Having struggled with life in a wheelchair for four years was a huge challenge. Despite making progress, I still am not walking on my own property and even walking into a store without the bones dislocating or subluxating. Strangely, there have been times that I almost wished I had never known being able to walk. Losing function of your body can be so difficult. I believe that adapting to the loss of such critical functions like walking, may be more challenging than never having the experience and joy of those natural capacities. I am sure that sounds terrible to say, but it was where my emotions drifted at the time. And then, you also have to confront judgement which often accompanies the life experience of so many of us living with invisible conditions such as chronic pain. I think we have all had to face family, friends and the medical community failing to comprehend the notion that while many patients may appear healthy, this is not to be equated with a patients suffering from serious and severe symptoms. Thus, many patients with chronic conditions fail to receive the understanding and support so critical to their well being.

Ellen Smith

Life tends to shrink when you have to struggle with medical issues. Your world, which initially seemed expansive with dreams of adventure, travel and possible opportunities, becomes limited to your immediate environment. So much is given up and no longer going to be. But we also have to learn how to break down the emotional and physical barriers which seem to be closing in and find a way to live life and feel purpose despite the losses.

Another thing that strikes me is how insignificant things from my earlier life seem now. For instance, although I never dreamed about having a lot of money, I did want enough to keep up with bills and life in general. But now, money couldn’t buy what I need, a body without two incurable conditions. Also, I don’t care about styles, material things, trips, even vacations and would trade all that for just living without pain and physical deterioration. The chronic patients capacity to accept the loss of many of the most basic and joyful human experiences, as in my case, the privilege of holding my grandchildren, remains the patients greatest challenge. Once the emotions of loss are better managed, the chronic patient must move on to adaptation to his or her new work, in order to move forward.

Again, I always have to remind myself of all the family, friends and acquaintances we have met that are dealing with so much more. You tend to get stuck at first with the notion that this is just about you but when we open our eyes and look around, we all have something to cope with that they wish they didn’t have to address. My husband and I decided that to learn how to live with EDS in our lives, that we needed to reach out and try to help others and pass forward anything that have learned so that the burden on the next person might be diminished. I know with my two conditions, ehlers-danlos syndrome and sarcoidosis, along with now being sixty-eight years old, that my mission is to help others and dream that someday, the next generation will not have to experience what many of us deal with. Weather it is issues of difficulty obtaining medication needed, finding funding to sustain our lives with health issues, or even knowing that there is a cure to hold on to, I hope that these concerns and struggles will lessen for those after me.

So, have you ever wondered how to duplicate that good day? I sure have, by running through my mind over and over. I review what I ate, how I moved, what I did, etc. to try to figure out if there was someway I could repeat the same positive results. I haven’t achieved that goal yet. But I do keep in mind things that I did differently on that bad day that might have triggered the negative change. Maybe this can never be figured out but instead, we need to focus on whatever good in our lives we do have. Again, to just wake up to another day makes me feel grateful, despite the daily struggles, sometimes isolation, and heartbreak. At least we have this next day to live.

May life be kind to you!

Ellen Lenox Smith is an activist for the expansion of medical cannabis to treat chronic pain and is also a Board Member of the US Pain Foundation. Her opinions are her own and don’t necessarily reflect US Pain Foundation or other organizations she works with.

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Authored by: Ellen Lenox Smith

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trish hochheim

Thank you.
It’s exactly my life.

Dooney

Thank you for helping pain patients. Articles like these remind you that you are not alone in your thoughts. A big part for me is missing the spontaneity of when I was well. No jumping out of bed and deciding to go to breakfast. Everything has to be planned in advance. Even when planned, there is no gaurantee of how you will be feeling or which thing is going to act up that day. I find I am always having to make up for lost time, so I never get ahead or do anything extra around the house. No just having a good pain day and not worrying about the to do list. Its either feel like [edit] and lay on the couch (which I do not define as relaxing !) or rushing around on those good days to get things done.

Susan Viera

Well said! When I have a good day I think that I’m getting better. I have a good day once every month or so, but my mind wants to believe that it’s going to be better and then it comes back. I always rack my brain as to what I did different, what I ate, how I moved, what position I sat in. I think sometimes I’m crazy for thinking I can figure it out, but I must try. It’s funny how your brain just wants things to be back to normal. I have yet to have a diagnosis in over 2 years with a ton of Dr. appointments under my belt and all that time wasted while my health continues to degrade and it seems no one can help me! I’ll always welcome a good day.

Hayden

EXCELLENT advice Susan, 70 years young however, positive thinking does not do a great deal for many millions of patients that can not even get out of bed at even 25 years old. I truly wish there WAS “one” magic cure for all of us. I have not “lived” with pain since childhood but, I too was taught to not verbalize personal pain because people may reply “oh that is so bad” when really theare not experiencing what the patient is feeling or worse, don’t care. I was taught help whenever, wherever I can. I served my fellow man a a volunteer firefighter for 14 years…..no pay. We all risked our lives, the volunteers without much thought of the possibility of personal injury or life loss. We depended on hours, weeks and years of continuous training. I suppose my point is, there is no one method of intolerable pain management and there are many “degrees” of pain experience seemingly all treatable with one maximum dosage of opioid medication when all other therapy has failed, as per the CDC “suggested” guideline. I am sure there are millions more patients sufffering with a pain level that most of us could not endure…..period. Every patient must, with the help of xperienced, trained, physicians and knowledge learned over years just how to help those of us that “could” still be possibly employed, tying to make mortgage payments or just accomplish daily, neccessary tasks that someone has to do, i.e. gather and cook our meals etc. I am not trying to argue anyones point of view but, the idea that for millions of people, dot/gov has the answer for all of us and that is a blanket maximum of medication for people/patients with decades of medication use now in excess of what dot/gov believes will reduce drug addicition and overdose. The CDC “guideline” is simply NOT even close to lowering the numbers of substance abuse death. For many, repeating a rare good day is simply not repeatable and no one better knows “how” to accomplish good days better than our treating physicians now forced to comply with the CDC , DEA enforced guideline for opioid prescribing physicians. Live long and prosper is just not in dot/govs vocabulary.

Maureen M.

Ellen, I specifically relate to your last paragraph. I go through those thoughts often. Our Chronic pain can be so confusing, most of the time huh?!
I’m just coming out of 4 weeks of horrible spinal nerve pain in my sacrum and radiating into both legs. My life shit down much more due to it.
Nothing nor any resting position made me comfortable.
I’m sure somethng triggered the bilateral sciatic nerves..oh whatever! Lol
but this round of nerve pain surely threw me for a loop!
Then yesterday it was gone! I was stunned.
Sooo, Today I took someone to Social Security, sat in the hard chair there all the while knowing ‘I should go get my pillow in the car’ but I didn’t because it was torrentially raining. So, I stood against the wall instead,.. which treats me no better.
The nerve pain is stirred up again and I’m back in bed in misery.
My thought… It was just too soon to go do something like that after a month long of mega suffering!
But, I just wanted to feel ‘normal’ after all those weeks….

Hayden

I have not been pain free ONE day in 23 years. Yes, some, a very few days , were less painful with serious back surgeries, plates, screws, etc. and I have been able to continue to work for 23 years UNTIL the CDC “guideline” for opioid medication prescribing physicians was enforced at the start of 2016. This “guideline” forced my pain management specialist to reduce my tailored to me, personal medication, documented, as per the CDC “guideline” conversion chart by 80 percent. I was at 100 milligrams of medication reduced to 20 milligrams per day. Even with my medication before reduced, I was NEVER pain free. I do agree that at least in my particular case pain levels do vary from day to day or week to week. Now at an 80 percent reduction in medication, the same medication without an increase in 7 years I was forced to attempt to be “awarded” S.S. Disability. With the condition I have, my health even before the “guideline”, my wife and I of 40 years of marriage have lost our “paid for” home that I built with my own hands, our life savings as of the start of 2016 when the “guideline” became DEA enforced, and are in the worst finacial condition of my uninterupted work history of 44 years. GOOD days? Gone with the action of an asinine “guideline”. Did dot/gov consider my documentation and history with the use of opioid medication? Did dot/gov consider ANYONES documented history of an incorrectable disaese or injury before setting the new “mis-guidedline” causing our physicians (who know best our pain generating health issues) to enforce the “guideline” without ANY consultation with the prescribing physicians for ANY pain management patient? NO! The decision to author the “guideline” was done behind closed doors along with the medication “conversion chart”. I fear GOOD days are gone and we have ZERO alternative effective therapy to manage a continuous pain level that the toughest Navy Seal could not endure. I hope for good days but, the more groups and pain managment advocacy groups that I read about and participate in, the more it has become VERY clear that the “opioid crisis” which should be called a substance ABUSE crisis is not lowering drug overdose numbers even with MILLIONS less opioid medication prescriptions issued in 2016 and 2017 along with a mandantory maximum amount of medication prescribed as a “blanket” maximum dosage of medication. Will dot/gov, the CDC, HHS, FDA, or DEA admit that a mistake was made? Don’t hold your breath. Pray for a good day.

Susan

Many relative in my family were Christian Sciencentist. From an early age I was taught not to verbalize my pain. They didn’t want to hear about it. I have found this lesson to be very helpful in dealing with pain. When I discuss pain, I am magnifying the intensity, and that part of my life. Since the age of 3, I have had pain. I have learned to channel the mental awareness of pain into something other than talking about it or using it as an excuse not to participate in life. I try everything. I am 70 yrs young, and I live alone. My mantra is try, try, try, and then try one last time. I make a list of those things I need to get done, so that when someone stops by i can ask for help. Diet and vitamin supplements have helped me make bone now that i couldnt when i was younger. Supplements are an important part of my self care. So my advice is to stop focusing on the pain, and get into a hobby. I have several: my cat, my swimming pool strawberries. My blue berry plants, and swimming,ie walking in the water. These have helped me transfer the energy of worrying about pain into something productive.

The government should allow a vote from all of the patients dealing with chronic pain. A vote on how we should be treated. If you have followed history it seems that every time politics is involved things get screwed up. The government should let the doctors do what they can to let people with chronic pain have some kind of life. Keep the DEA out of it. If it affected them or their family’s it would be a different story. I have been dealing with chronic pain for 23 years and I have a few choice words I would like to share with the DEA and legislators.

Christine Smith

This reply is for Mr Gary Snook his article was written 2016 —“OPINION; THE VOICE OF THE CHRONIC PAIN PATIENT IS NOT BEING HEARD” ? you have a voice after reading your story I just have to reply ! You are an amazing writer & I feel your voice could be heard Over a lot of us r/t the meaning , context & facts you state in your story! Please wecneed more of that ! Desperate to want to fight but i believe we need to take a stand as chronic pain patients and FIGHT … where are all these attorneys who know our rights are being violated ? We need there help! I will start researching and assist anyone who wants to join!!! I am a CHRONIC PAIN PATIENT SINCE 2001 and I also am a REGISTERED NURSE! So dont forget i think each && everyone of could help eachother!

Sandy

GOOD DAYS

Sandy

BRAVO! Really well written and so beautifully stated. Thank you for sharing.