Why I Now Dread Weekends and Holidays Breaks Living with Chronic Pain – Do You Too?

Why I Now Dread Weekends and Holidays Breaks Living with Chronic Pain – Do You Too?

By Ellen Lenox Smith.

For years, I would relish the thoughts of an upcoming weekend and even better yet, the three day breaks and holidays.  Well aware that these breaks in the routine and mundane were temporary, they would fill my emotions with happiness, a chance to relax and provide the opportunity to anticipate the things I would have time to do with a busy life we lead. But today, living with chronic pain, which includes a rare misunderstood condition, I no longer look forward to those longer breaks as they represent a threat to my sense of security as my critical medical safety net is usually not available, so I have come to dread these periods I once so enjoyed. So now, I instead have to fight the emotions of facing feeling very alone and at times frightened to have to face medical issues on my own without the critical support I usually rely upon.  It is just such a transition to go from positive emotions to such negative ones for the same events.

Living with Ehlers-Danlos Syndrome is no picnic. You are born with connective tissue that is deformed and is thus unable to allow ligaments and tendons to function normally. Due to this, we run into some serious problems. For instance, a simple hug from a dear friend, a wrong twist, and over doing an activity are examples of what can cause the bones to sublux or even dislocate. Unfortunately, running to a hospital is not an answer for what is required to relieve the pain created by the structural instability.  The answer is to be treated by a manual physical therapist to gently and safely correct the position of the bones. Given the nature of my need for specialized treatment, there are very limited options for weekend or holiday treatment arrangements. On most weekends and holidays, I have no one to turn to.That is where the panic comes comes from – where can we turn for help when those establishments are closed?

Ellen Lenox Smith

If it weren’t for a few good souls that have taken on my condition in my state of Rhode Island, I would not be here to express these thoughts out in writing. These professionals are my guardian angels as they have, on numerous occasions, chosen to ignore all of their professional and personal responsibilities to treat me. They have saved my life, when my sternum and trachea have shifted to the point of compromising breathing. Yet, always lingering in my emotions is that question of what would happen if they didn’t have that moment to steal away from their own lives to help me?

So, I am guessing you are wondering why I wouldn’t just go to a hospital? Believe me, I have tried that a few times when the situation has become so frightening for my family as my life appeared to be in jeopardy making the hospital the only option.  Unfortunately, when you share that you need your subluxed bones put back in place, they look at my condition, which is invisible to the naked eye and I am convinced hospital staff think that I am delusional. Instead of the necessary and appropriate treatment, I get blood tests, scans and other suggestions, none of which are needed. I have actually even been hurt by hospital doctors and nurses due to their lack of understanding of my condition. In one circumstance, I my hip was permanently damaged from their mishandling of my body, which is very vulnerable to touch and movement. All I have required was the correct type of PT but I have never found a hospital that has had a manual physical therapist on staff. So again, that negative emotion is supported by the possibility on the long weekends that outpatient therapy may not be available and hospitals do not possess the expertise to help me.The hospital is just not a safe place for me. Just imagine not feeling safe to go to a hospital when most are able to get help there. I wish it was an option for me too!

Along with not feeling like a hospital can be a safe option, negative emotions are also brought on any time we consider the thought of traveling. If I can’t receive the critical treatment in my own community then can you imagine what it feels like to consider traveling away from those manual PT that know what to do to help me? Even if it is during the work week, being away is a huge issue for few manual physical therapists exist in this country and many of those that do exist, are still not even aware of this condition. So, anxiety is also brought on by traveling. What was once such fun to plan out and dream about, is now another example of something that brings on concern as to what we would do if something goes wrong and I need help.

I have not always been a person given to stressing out over the “what if’s” of  taking on adventures, but learning to cope with a more complicated, misunderstood condition has now added this to my life. I am not always proud of how I handle the stresses created by my condition but I do attempt every day to stay positive despite the challenges posed by EDS. I work daily to stay positive and doing what I can do to have purpose and meaning in life.

I hope someday that I can enjoy those weekends, holidays and trips without the concern about what we would do “if” something goes wrong. It is one more reminder to me that life is precious, fleeting, and a huge gift. If you have come up with some solutions as how to handle situations like this, I hope you will share them below in the comments. It truly helps to pay our ideas and successes forward to the next person.

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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Stephan St Claire

Yes. I can relate. To feel so out of step with the rest of healthy people. A three day weekend. Holidays. Are now to be dreaded. How to travel. To have all you need for your pain control. To weather out the days where people are having fun. As for me, it is just another loss of days. Days that used to replenish, have now turned into waiting for these extended days to end. So. The world can go back to work and play, as I already have cancelled plans for any trips and holidays. Chronic pain doesn’t listen to calendars, as docs do not listen to chronic pain sufferers.

sandy auriene sullivan

Ive h-EDS with injuries that impact my left side dramatically. My daughter has been living with her dx for 2yrs now and is 15yrs old and so far only injured herself briefly during *acrobatic* dance [It was that or gymnastics and I said NO NO NO to it. Explaining that she would be very good at it and her coach will take advantage of it but injuries are easy to us; the last thing I want is for her to be injured living with hEDS before 20yrs old!]

It’s a tough dx and relatively ‘new’ for the medical community. Still so much misunderstanding.

Traditional MJ never worked enough on me either. When Florida opened dispensaries with concentrates; I signed up.

Cindy: try to start with and stick to *concentrates* high THC. They are pretty cheap and you get 10% off if disabled/medicare-medicaid/EBT proof of low income. That helps! Like you, spent thousands trying to figure out what worked until finding concentrates. I eat it every day around noon – its a very small amount needed. Then I can add a little to a portable vaporizer for immediate relief. [instead of buying the PRE-filled carts which are very expensive!! You are now allowed to buy concentrate and use for ingestion or vape!]

It doesn’t get me stoned. It just slows the signals the CNS sends to the brain, easing my anxiety and *panic* greatly which made me naturally reduce my need for klonopin for panic [however, some ‘strains’ do increase anxiety while helping pain. The best strains – regardless of what ‘name’ it is given as long as it is *INDICA* it is for pain and anxiety. Florida has CBD/Indica/Sativa/Hybrid classification and only a handful of names. Most dispensaries carry a couple of indicas, a couple of sativas and several hybrids a combination of the two.]

Maybe that information can help some navigate the Florida MMJ model for pain and save you a great deal of money. Concentrates are 50-60$ a gram after 10% off.

Lynda Hillebrenner

Ellen, you are amazing woman. I have followed your writings on this blog, and with all you go through, you seem to remain positive & hopeful. I suffer from intractable migraine disease & IBS-M. It makes traveling worrisome – not knowing where I’ll find a restroom urgently when needed. Or what will the weather (my biggest trigger) be like. I love to travel or did before my conditions became so unpredictable. I have physician write me a letter explaining my condition, so that if I have to go to the hospital while out of town, I have verification of what’s going on and what generally works for me. I relate that bc I empathize with you. I have a wonderful PT who helps so much, but she has had extensive training that most PTs do not. In her case, she knows other PTs who have been trained & networks with them. I would ask your PT if she/he could find someone with similar training. They had to trained by someone & maybe there is a association group that specializes in manual physical therapy, that can check to see where others are so you may be able to find one ahead of your travels. The only other suggestion, is to have your SO or someone who could travel with you trained by your PT on what to do in emergency settings to help you. I know they can’t learn all the special treatments you may need, but emergency ones, like when your sternum was out of place, causing difficulties with breathing. Have you ever been treated by a gentle chiropractor? It would seem to me that since they work with subluxations all the time, they might be a travel alternative. My daughter is a chiropractor and she listens to her patients about what works for them & sometimes only needs to make a few manual adjustments to help. I wish you luck & pray you find some answers. When I read the NPR blog, I appreciate the suggestions that others make. You are an inspiration to many of us, even if we have different diagnoses, we all understand pain.

Geoffrey Nielson

Just need to say Thank You for the Power Within You Within Me.
8+ years of chronic back and feet pain. Love the Life in my living.
Courage and meditation keeps me trusting in ‘The Greater’.
Grateful in Arkansas,
Geoffrey Nielson

cindy

This sounds so horrid, but can’t you bring your medical records with you to a hospital so they can see that you know what you’re talking about and then get proper treatment?

Before I read your column, I thought you were going to say that you dreaded those times b/c friends/family would want to go away and you couldn’t join them.

I have acute chronic pain and can no longer travel. By the time I’d get anywhere, I’d be in such bad shape, I’d never leave the hotel room. So, my SO travels alone. In a few months, he’s going to the one place that I’ve desperately longed to go to for decades. So, this trip is bothering me much more than his other trips, even though I really love to travel and it’s always hard to be stuck at home.

Meanwhile, my pain manager just reduced my opioid Rx’s so that I wouldn’t “stand out so much” or get blacklisted. I never heard of the term MME until recently. He said I was on 165 MME, and that was too high above Medicare’s 90 standard. Now I dont’ know what the new MME is, but he felt compelled to do that. Even though since my pain began 10 years ago, I had to stop working and have been largely sofa-bound even with my Rx’s. I could barely grocery shop and do laundry and even shower before. I can’t imagine what’s coming.

Given how my life has shrunk to almost nothing, I’ve been amazed to read here that some people have managed to work and have full lives with their pain as long as they had their meds. ANd I”ve tried every medical option available — PT, other non drug treatments, and non-opioid drugs. Now, I have to try medical mj, and if that doesnt’ work, I dont’ know what will happen. The expense of that — esp since there could be tons of attempts at strains and doses before finding the right one, if I ever manage to find a right one, is causing me a lot of new stress. I already spent almost $1K on MMJ, and it didn’t work at all adn so I gave up. But now, with the new lower opioid Rx I am forced to try again.

chuck darrah

I live with horrible constant chronic pain every hour of every day. Before insanity set in my Doctors kept me comfortable enough to have some quality of life.My conditions are all degenerative and can not be fixed with surgery. After 18 years of trying everything out there I have found that opiod medication is the only thing that reduces my pain levels. My medication has been reduced so low that many times my pain really is unbearable.Emergency Rooms are no longer an option as they degrade and humiliate you treating you like some garbage addict trying to score.You leave there with all the pain you arrived with and the feeling you have been raped.

Virginia

Oh my heart goes out to you, my dear. And yes, I can empathize with you regarding hospital care, and especially holidays. In fact, holidays to me are almost more painful than the pain I have everyday in my body!!! Holidays to me are very intrusive, get in the way of many business needs and doctors appointments to make, etc.
So, what I’m about to say that I know will help you will, sound like, as it did to me for the first 30 times or so, a clanging cymbal, or just another sermon.
Yes, I’m talking about Jesus. I’m not talking about religion, about how to change you life. About what you have to change, or any of that. Jesus meets you right where you are. He feels all the things you feel. He’s always right there with open arms waiting for you to just reach out and believe who He is, that He is the way to God the Father and eternal life without any pain, suffering, tears, or sorrow. It’s called hope, by faith in believing in Someone who loves you so much that He died for you even before you gave your love and life to Him.
You are a precious woman, Ellen. You’ve been through so much. I pray for you sweetheart that you would find the peace and joy which comes from knowing everything is going to be alright. Everything. That’s what knowing Jesus does. Gives you hope. Let’s you know that no matter what happens here in this world to you, that it’s all going to be ok.
That is what helps me, Ellen. Jesus is what and Who gets me out of bed. Doctors don’t know how that’s possible. I even care for others. Even needing to be moved in bed! I drive. I can do all things through Christ who strengthens me. Philippians 4:13
I hope I’ve not offended you for I know how I was before I knew the Lord. I wanted no part of Him, because I saw how other people who called themselves Christians lived their lives. Then a dear friend told me to keep my eyes on the Lord and don’t be the same hypocrite as those I pointed out.
I pray this helps you.

S. Dixon

I think that all of us dread the Holidays now. We want to see all of our loved ones, but it’s such a strain.