Chronic Pain Time Machine
When we are children, time goes by soooo slowly- sometimes we have more vivid memories from youth than just last week. In High school, I remember dating someone, feeling as though we were together for years when in reality the time may have only been months, but the value of it was just as great as many years. Was it the focus perhaps? The undivided attention? Was it the emotional impact? The relationship blew out a canyon of feelings and memories… like nothing you had ever felt or experienced before.
“Time is an illusion.” -Albert Einstein
“Time is what you make of it.” -unknown
I think about things like this from my bed now. I feel time slipping through my grasp at an alarming speed when I think about how long I’ve been chronically ill. [Especially] When I think of all of the missed celebrations gone by. The weddings. The births. All of my best friend’s son’s birthdays missed. My baby brother’s sporting events.
Only one life
Once in a lifetime
Don’t look back
Crane your neck
*
Only one life
Sand in a bottle
Sand so quick
Sand like diamonds
Every single moment
So damn precious
*
Only one life
Slow down time
Ticking on by
Once in a lifetime
Time like diamonds
Moments shine
Around your neck
But there’s another side to experiencing time. Now this is a secret that people with chronic pain know that I’ll be letting you in on:
Time slows down when you are suffering. The more pain you are in, the slower time goes.
Slow time in pain is definitely NOT like the gift it sounds like, however. Mostly, we are wishing for the minutes to speed up. But time going by faster will not diminish the pain, unfortunately. I used to push myself to get through each minute. Watching the clock, I would be relieved I got through another minute gone by- another day passed. Congratulations to me- I got through the day! The problem with that is wishing away time. Before I knew it, so much time had gone by and my condition was only worsening, treatments weren’t helping, and ticking away my life’s minutes was only getting me closer to worse problems in my future.
I cannot control so many of my circumstances, and I cannot go out and DO all that the world once called from me. However, I see a new opportunity presented. Precious moments with loved ones can be truly cherished instead of rushed through. I’m not implying everyone in pain has a surplus of time on their hands. No. In fact, what this means is the pain is so outrageous that I’m fighting not falling asleep, passing out, or screaming out loud. This very physical fight between my will and body is where the precious moments lie between. Where my best friend holds my hand at my bedside whispering to me about her son’s new toys at Christmas with a twinkle in her eyes. This is where time slows down and the moment seems to go on and on.
Life is a gift. We only have so much time. And we each only have one trip. If your current time feels it has slowed down, maybe it can be an opportunity to focus on the moments that matter. Looking back, time will always feel like it went by too quickly. No matter your present circumstances, you always have a choice in how you spend your moments.
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Posted on January 10, 2015, in Gratitude, Inspiration, Poetry and tagged A word on time, CFS, Chronic Illness, Chronic pain, crps, Don't wish away your pain, Every moment is precious, fibromyalgia, how to make better use of time, How to slow down the clock, MS, rsd, Spoonie, Suffering slows down time, Time, time and chronic pain, Time goes by, Time is precious. Bookmark the permalink. 17 Comments.
aBodyofHope 
I know the feeling all too well only the majority of the time I’m alone in bed wishing away the time and no one understands and everyone expects me to just get up and be cured… No one understands the pain or the fact that I lie in bed not by choice but because it hurts so very much! It is so frustrating and depressing.
Thanks for sharing your post and allowing me to vent a little.
Much love,
Lysa xx
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I’m so sorry you are going through this. I wish chronic illness on no one. It’s very hard. Often it feels like no one seems to understand.
Do you belong to an online support group? I find that’s where most of my friends come from these days. For me they can offer support when others don’t.
You aren’t alone.
Thank you so much for sharing your comment.
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Thank you… After reading your post I just had to vent. I have RSD in both of my feet and it has been 3 years and I’m still trying to deal with the loss of my “normal” life and activities. I don’t belong to an online support group as I don’t even know where to begin to look for one. Any suggestions?
Much Love,
Lysa xx
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Hi Lysa,
I’m very sorry to hear you have CRPS in both legs. Even though I have many other conditions now, in the beginning years of being diagnosed with CRPS, I can say it was the most jarring time emotionally and mentally. It’s when everything is flipped upside down and there is a huge disconnect from everyone else and even who I was. My heart goes out to you if you are in that tornado place.
I’ve been on so many support groups over the years, but the 2 I end up feeling actually supported on are Living with RSD and Here to Help RSD. Both are on Facebook. Facebook has a really tight CRPS and chronic illness community I have found- we are taking over!!! lol.
It helps to have good peeps to talk to on instant messenger in the middle of the night who really know what I’m talking about, you know?
Maybe I’ll catch you on one of those groups sometime. It helps me to remember- even though it’s my unique path, the road has many travelers on it. You are never alone. Good to find a fellow traveler ❤
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Thank you for the information and I will definitely look into those support groups. Unfortunately I am in the middle of that tornado place and it sucks!
I think being a part of a group with others who have RSD will help me out a lot. No one seems to understand the intense pain that I am in and expects me to do things I am no longer able to… ugh! It is nice to chat with you as I don’t feel so alone in this now and I hope to catch you in one of those groups!
xx
Lysa
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Thank you, this gives me a lot to think about. I really like the thought of focusing on the moments that matter. At times, I do find myself wishing time away. I don’t stop to cherish those moments you mention because I’m too inwardly focused to even realize those moments are happening. I think this is really important because often the advice I hear is to focus on how we will be changed and made new in heaven (good things to focus on of course!), but we forget that God tells us we will see the goodness of the Lord in the land of the living. If we think only of the life to come, we miss those moments God gives us in this lifetime. Thank you so much for the reminder.
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Thank you so much. I’m so blessed by your thoughts!
Yes, that’s such a great point.
I’ve also heard the same reminders often to focus on heaven and our new pain-free bodies there. But so much of the Bible talks about what we are meant to do here with the time given to us now. After realizing God may not heal me any time soon, but the time I have now is still a gift. Even if I’m sick, I can still make choices with my moments.
We might not be doing things we think are important, but God’s view of success and “important” is not like ours, you know?
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Thank you. You put into words how I feel about my life in pain.
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Thank you for saying so. I appreciate that ❤
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As everyone else, I want to thank you for giving me so much to think on with this post, as well as for the precious glimmer both of hope and into your daily life. It made me want so badly to sit by your side and hold your hand for hours while we both rest our bodies. Fortunately, though I know that’s not possible, I feel like our souls hold hands despite the distance. And although it’s not the same, and I wish I could be closer, I am undeniably changed through having met you, through reading your words and letting them seep through my cloudy brain into my consciousness, through your reaching out to me first, back when I was too scared and just an admirer from a distance even before I started writing again. You have been the catalyst behind so much that I have recognized, reclaimed, and built up since we became friends. For me, months ago you stopped the hands on the clock from spinning so wildly, while my life passed by unnoticed and un-enjoyed around me. I love that you wrote about this, because it is something I learned from you already (and which you started teaching me from the first moment we talked), but not from your words directly as in this post, but in the way that you live, the amount of gratitude and joy that you get out of your days, the vivacious YOU that is all over this blog, the you that I love and admire. I didn’t know how to come back to life, but you showed me the way to embrace the good that I wasn’t allowing myself to see, like you just gave me a whole new spectrum of colors to paint my life in. You opened my eyes to what was all around me, but invisible. So it is only right that you found the perfect words to explain what it means to be fully present. There is no judgement in your words. There is no minimizing the presence of those negative forces within our lives. There never is. I am continually humbled by that. Every sentence is like an outstretched hand, waiting to pull others out of the darkness.
❤
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Our souls DO hold hold hands, Jess ❤ ❤ I love that you said that! 🙂 Perfect.
Your warmth and genuine way of writing makes me feel like you ARE here with me.
I'm overwhelmed by you. Thank you so much for making me and my simple words feel valuable. You are always seeking to grow and learn- always looking toward the light. You inspire me in your perseverance no matter how hard things are, you haven't allowed your problems to conquer you.
Thank you Jess for these words I don't know how to match in gratitude with my foggy mind tonight. But please know, the admiration and connection is bright and vivid shining back to you ❤ ❤
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Reblogged this on Finding Out Fibro and commented:
The tears that are running down my face right now are for a friend of many, many years who is nearly out of time. I read her message today about the limited amount of time she had been given by doctors. When you hear that coming from someone you love, admire, and have been inspired and awed by, it does not sink in right away. I mean, it does a little, I sobbed, my hands posed shaking above the keyboard like maybe I would know what to say in reply to such a terrible thing. I have researched and researched genetic stomach cancers and found every positive blog, every survivor story out there, but still I knew that while I was trying to arm myself with information about her cancer, I was also preparing myself for today and for the sadder days that follow.
In honor of how my friend has bravely fought this cruel and horrific disease, and in honor of how she has not wasted her beautiful life, not one drop of it. I don’t have any wisdom to offer, I don’t want to offer condolences to a woman who is still very much alive and still very much herself. I am crying, but I am so, so, proud of this woman for making her time count, for not letting fear run her life. I do not know anyone as strong or as compassionate as she is. She is a rare person, a loving friend, and a fearless fighter.
This post by A Body of Hope is the perfect description of what it means to tackle the difficult issue of time passing us by while we are ill. Today especially, it means so much to not let time slip by, to appreciate every sight, smell, sound, and texture I encounter, to savor each interaction with someone, and to honor the way that my dear friend suffering with stomach cancer is leaving such a brilliant legacy behind her through her strength and her smile and the hundreds upon hundreds who love her like they do.
I’m reblogging this to remind myself and others that every moment really is precious, incredibly so.
To both inspirational women: I am incredibly grateful. Words fail me here, I think this is the part where it all does sink in and I need to be held. ❤
I wish everyone facing challenges in life that seem beyond their control could read this comforting and gorgeously honest post.
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Jess,
What a beautiful, brave soul. One who I am learning from right now as you share about her and the way she has so impacted your life. Not because she is sick, but because she has always been special and beautiful- because she has always loved you and taught you, as you have loved and taught her through your special friendship.
I am so sorry your heart is aching so for her. I know if you could heal her or take her illness from her, you would.
My friend and chronic pain author, Mary Jane Gonzales wrote a book pondering the the wearing down of her body and coming closer to the end of her life. She said, “I just want the people I love to feel loved. And I want the people I cherish to feel cherished.”
How beautiful a gift that you know how cherished you are by your friend. There is no question how much she values you, and how much you cherish her. What greater thing is there?
Thank you, Jess. I’m so sorry.
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Beautiful and thoughtful. Wish you could feel this hug. I just bite the bullet and GO, no matter how I feel. So much to do homeschooling a growing boy. Very tough some days.
Xxx
Diana
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Hug received. I do feel it, thank you ❤
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So well said! You write so beautifully. I know that when I was with my mom in the hospital and I was in pain but didn’t want her to know so I could spend that time with her and really talk. Also, the days I went to her at home and helped to take care of her…now I feel the time went so fast after losing her 9 days ago. But you remind me that the moments I had with her did slow down and were cherished. Thank you. That is the best birthday gift I could have today.
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Oh Kathleen, my heart goes out to you for the loss of your mom. I’m so sorry for all the hurt your are facing.
Thank you for sharing that with me. I will never forget it.
On your birthday, I know you were honoring your mother’s memory and all of the precious memories you will always remember.
God be with you and your family.
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