Can I Believe I Can Keep Positive Changes?

Can I Believe I Can Keep Positive Changes?

By Ellen Lenox Smith.

Living life with chronic pain has meant dealing with twenty-four surgeries and two presently incurable conditions, which can often leave you on edge and unfortunately, sometimes waiting for the next shoe to drop. I try so hard not to feel scared, negative and anticipating something about to go wrong again. For individuals with a history of serious chronic health conditions, the future can often feel threatening awaiting the next challenge, but the reality is there and can haunt me at times. Chronic pain patients often expend a great deal of emotional energy attempting to fend off fears of serious challenges such as further deterioration to vulnerable bodies and psyches.  Daily, I have to keep pushing those thoughts away.

Ellen Lenox Smith

Every day of the life I have been living for the past fifteen years, has entailed work towards a goal for better quality of life. Endless hours a week are spent on strengthening exercises, manual physical therapy appointments, surgeries and recuperations, testing, caution on how to move without hurting myself, along with examination of all foods and medications put into the body. Each day requires calculation to keep safe and attempt to minimize pain levels.

So where do those emotions go when it looks like I have hit a better moment? At first, I quickly slip into believing this is for keeps and fall right into the dream of that life I once had, returning to me. But shortly, after I experience that feeling of excitement, I often revert to the negative framework of waiting for the other shoe to drop and wonder when that moment will possibly slip away from my hard-earned success.  I wish my mind wouldn’t do this – slipping into the mode of self-doubt coupled with the possible fear and questioning like it is about to be withdrawn. Do you experience this too?

So, why did I Question this?

We just attempted, for only the second time in years, going to the beach to read and enjoy being at the ocean. I was excited until the emotions crept in as to what the physical cost to me might be for walking on the sand again. Would it again sublux (partial dislocation) the legs and feet or even worse, dislocate my damaged hip? Well, with talking myself down, I walked about ten feet on soft sand and was able to sit and read on the beach for the first time in years. This once common and enjoyable trip to the beach required an expenditure of a great deal of emotional energy to calm the emotions down and to try to believe this would work, which it did. I avoided physical damage, but it was so annoying that this exciting adventure was being marred by the “what if” thoughts.

Why did I Question this?

We just went to NYC to see three of our four sons, wives and three of our four grandchildren and didn’t pack my wheelchair for our one night stay over. This was the first trip in thirteen years where we left the chair behind. I have been now walking the dogs up the street, walking in stores and have been having my legs hold, after years of surgery on my legs, living for four years in a wheelchair and until recently, still needing use of a scooter or wheelchair in a store.  The trip to NY turned out to be successful! I was able to use my legs without damage of subluxations. Yet, I again had to remind myself this was possible but those emotions of doubt and questioning as to if this could really work kept trying rise to the surface of my consciousness.

I wish we could learn to totally shut down the mind. I have heard that what we think about we can bring about. If that has any merit, then why would I be so immature to think about the negative when I work daily to make life have a more positive outcome? I will continue to find those moments in my life that help to shut down this thinking – like when I kick in the pool and the mind shuts off for me or when I try meditating each morning and run through my mind what I am grateful for. It does not come for free to focus on the positive while working to attempt to eliminate the negative. Those of us who have had ongoing medical issues have to work even harder to shut our minds down and believe we can have better moments and even deserve them. May you have success with training that mind to shut off the negative so you can find the courage to try what has been denied for some time with your medical issues.

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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Glad you had a successful NYC trip. My chronic illness has caused my brain to become stuck but I am rewiring it. I’m doing DNRS by Annie Hopper and I highly recommend it.

Louis Ogden

Steven, please no. Call a suicide hotline quickly – PLEASE!!!!!!!

Steven

So I be on your exercise mentally as long as possible.

Steven

IT IS SCARY AND NO ONE WILL TALK TO YOU BECAUSE THEY DONT WANT TO EVEN THINK ABOUT FORCED TORTURE FROM MEDICINE BEING WITHELD AND THEN SUICIDE. I AM EMBARASED TO SAY I CANT BLAME THEM..THIS IS IT, THE LAST WITHOLDINGS OF ONE TOO MANY. Good bye all!!!

Lindajean Dorris

Ellen, I can identify with everything you said. I tell myself every minute of the day and when I awake at night that I want to live life. My other mantra is never never give up. Yet I continually fight the incurable beast that wants to end my life. To make this struggle harder I receive no real treatment from the medical system. In this state of Idaho the Rhemotologist, states, ” Scleroderma only affects the skin, that is all we treat. So the Systemic Sclerosis is not truly accepted as a problem. My positive mind quickly tiers and wonders , why can they not help the continual diahreea, the loss of bladder control, the inability to have any solid food, the debilitating pain and the loss of the autonomic nervous system to function correctly and the list goes on the inability to breathe due to bad air. I have been on ensure for 3 years now. I want to live life more than anything else I live by myself I have no siblings close enough to see me. They are unable to deal with my illness, so I really can not speak to them of the fear of dieing alone, or ” hey let’s come up with some ideas so I can compensate for my physical issues so I can go out in the public and not fear my bodies betrayal. I have experienced going shopping and loosing control of my bladder and although I had a diaper on it ran down my legs onto the floor. All this time I keep saying I want to live life! I want to do something with someone, I want to walk ride my bike Yet 4 hours of loosing bowel control in the morning and after dropping an entire roll of toilet paper in the toliet, I cry and wonder why, why do I go on. My conversations are different than those who are healthy, so I am shunned. I’m too intense, every second I fight this beast, and if other situations, like a broken garage door etc come up, I am again fighting the negative. It is as if I fight two battles, my beast inside and my mind that sabatoges everything I think about. My reality is so far from anyone else’s, it is like I have forgotten how to live life. I never planned to end up alone with a beast that will take my life. Yet that is my reality. I want only to live, to learn joy again.Yet there is no help for me medically, I’m on Soc. Sec I am not the rich, the U. S. who tells everyone, and other countries that they are firm believers in humanity, who drop medicine and food to other countries do not help their own kind. I am one of the forgotten, one of the,” she can’t.” Yet I keep walking this path.

Louis Ogden

The future can be a big producer of anxiety when you hear of people all around you that have been forced to taper or had their meds just yanked from them; however, I’ve been fortunate and am still on the same dose of medicine that Dr. Forest Tennant prescribed to me before the DEA shut his practice down (what a farce – STILL NO CHARGES). Dr. Margaret Aranda has assumed his practice and kept me on the same dose. I keep the local medical board and the DEA apprised of my existence and what I take for my pain and, so far, so good, no one has attempted to even contact me. I also have a great support system from my wife, Kristen Ogden, who is also an advocate for those of us with chronic pain. Finally, I use music as a therapy. I’m learning how to play blues guitar and can play a keyboard along with some of my CDs. Music keeps me sane !

Alice

Alice Carroll, you wrote there might be changes in January. Would you give me some details about that? Is it new legislation? Thanks very much!!

Maureen M.

Der Ellen, As always, very well said! I am so very happy for you that you are doing better and made that trip to NYC to see your kids! How is your husband’s foot doing? Has he had his surgery yet?
A couple of weeks ago I received a big whammy! I rent a small beach house and my landlords are moving back in. They gave me just 5 weeks to find a new humble abode and move!!!!
My mind… THE FEAR!! fear of this now throwing my strict health routine off (of which it did immediately!) and how this will effect my ill body!
THE PAIN! the pain that I will have to endure through home hunting, packing, moving, unpacking, and all the many other tons of details that come with moving!
That day and night I immediately went into FEAR mode! My body trembled and became riddled with increased pain that day from receiving the news and I became very sick overnight with increased symptoms of my Lupus condition.
Its’ been 2 weeks since now and I feel like I have an elephant sitting on my chest, difficulty breathing etc etc.
Last week I spent 6 straight days close to bed trying to heal my body from the symptoms of the stress of the shock of having to move. And my landlords have no idea whatsoever how their news effected my body. I’ve had to deal with the anger of it all, also.
Yesterday I finally began to start to balance out to my ‘norm’. I can think more clearly now and focus on this move. Stress is a huge NO NO to our bodies!
So yes, dealing with the effects on us from the simplest of things is exhausting to deal with.
I can relate to your ‘beach story’. I currently live just 9 houses from the beach and a few yers ago I learned quickly that walking on the beach is also a huge NoNo for my body. It uses too much energy and it throws my fused spine off and effects my left hip/leg, brings on inflamed spinal nerves etc etc. When my daughter and grandsons visited me form out of state I could not go onto the beach with them 🙁
I have learned to accept these things but it is always a struggle.
I pray that you can continue to do as good as your are right now. Keep strong warrior!
Maureen M.

Alice Carroll

I know the feeling, anxiety. I keep wondering what will happen on January 1, 2019 with my medication. I’m terrified that I will be cut off and don’t understand these Morphine Equivalency Equations at all. How do you go from mcg to mg and comparing wearing a patch to a pill? I can’t make sense of the thing. I’ve been doing well for 15+ years due to the medication and exercise and to go backwards seems inhumane to say the least.

Jessica Reible

Ellen, thanks for sharing your story. I think that the emotions we share regarding chronic pain are valid and, at times, overwhelming.

I urge you to please help the fight for chronic pain & help advocate for people who have found relief with long acting opioids. With so many abandoned & abused by their physicians, so many people are turning to suicide.

Please support by visiting
dontpunishpainrally.com

Around 100 rally’s are taking place around the U.S. on Sept. 18th. We sure would appreciate if you spread the word.

Visit the website above for your state rally & locations.

Alanna Wilgus

When those thoughts pop into my head, I repeat the words I learned from author, Louise Hay: “All is well in my world”. I take a deep breath and go on with my day. There is a lot of power in our thoughts!

Virginia

Maybe try thanking God everyday for walking up to another day, then counting all the many blessings along the way and praising Him for the many creatures and beautiful creations He had made for you tho enjoy: sunrises, sunsets, how your gardens grow, the many successes He helps you accomplish, your husband you’ve been blessed with, the doctor’s He has given you, and the strength to carry on each and everyday.
May the Lord be kind and continue to bless you.

Alex

For me, and perhaps others, when I completely accepted that my former life was history. By doing this the dominos began to fall. First came acceptance of my chronic pain – not all that difficult after accepting that this is my life for the foreseeable future. The next domino was an old kind of ” feel sorry for me” attitude which made room for a new approach to self care and life care.
As a 20+ year survivor of stage 2 CRPS I spend much of my free time coaching others in a new mindset toward their life with chronic pain. As my wonderful pain doc says, ” dealing with chronic pain is 20% medication and 80% mental discipline”.

cory

I dont worry what if as soon as i get up it starts(pain)and its more like for how long will i be able to try daily events before it(pain)puts me down out of service.