My Pain is Not Me!

My Pain is Not Me!

By Suzanne Stewart

People ask me sometimes “how can you do this? How do you do that with systemic/full body CRPS and several other high pain illnesses?  How can you go here & there when you’re in pain & you don’t feel well?  Don’t  you get so very fatigued”?  I have had other chronic pain patients accuse me of “not having pain as bad as theirs”, because I try to do different activities.  Yes, I’m in pain daily, whether I stay at home or if I go and do a little something that will either make me smile; or where I can make someone else smile.  My pain is not me and I have choices to make.  I can choose to use just my cane, walker, motorized scooter or my wheelchair.  But every day that I am alive, I try to do something, anything. I don’t believe in letting the days go by without experiencing the taste, feel, touch, smell, sights & any sounds possible to enrich my life in any way that I can.  As recently as this past Summer 2016, I was diagnosed with S.I.B.O. and Gastroparesis.  These make eating unpleasant and going out for dinner almost impossible.  But you notice that I say “almost”, because I still choose to go out to eat as a social experience with my husband and/or friends.  I just choose wisely or have something to drink.  I try to convince myself that it’s the experience of getting out and getting up.

Suzanne Stewart

Yes, I’m in pain and even the medications don’t take that away completely. Secondly,”yes”, I am exhausted after an outing, but it’s worth it because my bed, my chair and “my comfortable place” will always be there when I cannot do it for another moment.  But my husbands hand, my (2)daughters love, the giggles, smiles & sweet hugs of my granddaughters; they might not always be there!  I refuse to let fear, pain & fatigue ruin or rule my life!  There are those days that I do take to my bed or the couch….but those are resting days, in between the good stuff!

I have lost family and many friends, due to the fact that I may have to change plans at the last minute.  As I write today, about trying to go places and do a few things that are enjoyable; I must reiterate that I do have to listen to the chronic fatigue and pain when it tells me that I must not do another thing.  When it lets me know that I’ve “used up all of my spoons for the day (see the “Spoon Theory here:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) and it’s time to stop” (for now).  We all have to listen to our bodies, meaning that there will be days and maybe several in a row; when we are  unable to do something notable.  But if I can’t go out, I do try to at least mingle or  socialize each day to keep up my spirits. Some days it is via social media and the support groups that I run.  Other days it can be hanging out with my daughters/granddaughters; or just sitting quietly with my kitty cat on my lap and my husband reading next to me.  I just try to do at least one small “social” thing daily.  Every person has their own way of being content or even happy.  Some like to do Yoga, others enjoy reading or going shopping. I just try to do anything, no matter how small it might be; each day.  Some days taking a shower and doing my hair is my achievement.  If that’s all I can do on any given day, I give myself credit for doing “something”.  It takes so much out of us, just to shower and do our hair and/or makeup. It’s incredibly exhausting when you fight daily pain/fatigue.  Persons who don’t understand chronic pain would not be able to understand it.

I refuse to let the “bad stuff” rule my life!  I might get sad or down like everyone does from time to time; but then I pick myself up by the bootstrap and try again in a few hours, tomorrow or a couple of days!  Pain and fatigue will try to win my battle but My heart and soul will win the war!

Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor.  She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation. 

For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 19 comments for this article
  1. Layla Rose at 2:01 pm

    This is so me. Sometimes I use all my spoons for the next day as well. In times past I’ve gone out just so that I could have a nice night, and have worn myself out to the point that I didn’t get out of bed at all the next day. Sometimes, for me, a night out, means resting the entire next day. But since I’m a night owl, an extrovert, and love to party, sometimes it’s worth it, just to have the occassional memory of a night out. I will also get looks of surprise when I tell anyone about my disability, from encouragement to disbelief. Those that don’t think there’s anything really wrong and who tell me to “try”. Well, trying isn’t doing. They don’t know how much exertion can hurt us. Also I’ve thought of a response for the disbelievers: point out to them that you can’t see a headache either, yet they exist.

  2. danny harris at 10:07 am

    I am in need of help with chronic pain from a doctor in the Douglasville ga area,please help

  3. Maureen at 6:42 am

    Suzanne, Thank you very much for your care and empathy, for showing me the
    other side of your life (I can relate in my own ways) and for offering to be in touch.
    I will soon go to your blog and connect. With sincere gratitude, Maureen

    Jean, the other day what you posted what your friend taught you hit home with me big time when I read your post that night!!
    Just that day I pulled just a few weeds knowing the whole time that I should stop and put my brace on OR NOT DO IT AT ALL!
    I knew it would negatively effect my body. But, I also HOPED that it would not. 🙂
    But, it certainly did..I suffered all night with stabbing pain in my back with every move I made and it exhausted me and put me to bed. I chose to suffer didn’t I?!!
    I’m aware that at times I tell myself “oh well, you hurt anyway, what’s a little more pain”! But, its never a ‘little’ more, it’s always a LOT more! silly me!
    Your post made so much sense and I will look at my behavior in a whole new light now. You made me aware that it really is a ‘conscious’ choice after all and that I need to work even deeper on accepting my condition!
    And… that it is a matter of treating my body better. Thank YOU!
    As always, I love your posts and always get so much out of them. Maureen

  4. Jean Price at 9:24 am

    Anne and Cheryl…your kind compliments have touched my heart! Thanks so much! You’ve put a big smile on my face, and you both must know how much that’s appreciated! Bless you both!

    I think whenever every we pass on something we have learned to hopefully help others, and then we hear back from them…it’s really affirming! And gives some meaning and some purpose to our lives…NOT so much to our pain…but rather to our whole lives! I DON’T feel pain has any lofty purpose, other than it’s a great safety response creatively built into our bodies help us know when something is wrong, so we can seek help or change what we’re doing. And yet this safety response fails us when there is nothing we can do to change whatever is causing our pain…and the pain stays, and even grows! (Sometimes a gift can turn into a curse, I suppose! Pain sure can!)

    However, GOOD can certainly come out of the worst pain…both mental and physical! We see this even here…with all the compassion generated for each other and the special comfort and support given, plus the appreciation shown! It’s incredible how such wonderful things can grow out of something as horrible and devastating as persistent pain, isn’t it! Yet it DOES, and continues to for the rest of our lives, I think. I was so blessed prior to pain flooding my life, back in the late eighties, to have some loving and wise people teach me…and a job which helped me also learn so much about all the things we face as our live change…all the many losses and the eelings and the grief! Plus how to do the work of grief! I’m not sure I’d be here if I hadn’t received this…and also if I my spirituality hadn’t grown by leaps and bounds then too! Yet I’m more whole and more positive…and my marriage and family reflect this and they are too! That’s huge!! And certainly not something I did on my own, although I did have a lot of homework to do to get where I am now!! And great teachers!

    I’ve often thought I’m glad I’m not faced with the choice of having all my pain taken away…yet then loosing ALL I’ve learned and BECOME, all the ways I’ve grown as a person! Even knowing how much I’d give to be out of this pain, it would be an impossible DECISION for me…I’D WANT BOTH! Because I like myself so much more now. Plus I have more joy and appreciate all the small experiences of wonder and goodness so much more! And most important… I am so much closer to God now. and because of this, have so much more peace and the personal affirmation of knowing…no matter what, I am loved and I am never alone!! I’m less angry and I can share my gifts and feel like life is wonderful, despite pain! My life’s mantra could well be: Pain is AWFUL. Life is GREAT. And GOD is AWESOME!

    Although pain didn’t start me in the road to changing, (that was already happening)…pain certainly reinforced the positive effects of those changes and expanded all the horizons of how these changes have benefited me. I almost choke to say this…yet, pain can be a gift. And don’t we all see a little of this? Especially on better days…if we think about how we’ve grown and know ourselves better, all we’ve learned, and the friends we’ve made that are so special and dear…and who also live in pain, which was the first connection we had! Would I vote for pain as a teacher or a gift?! Emphatically NO, NEVER! Yet if I have to have pain…I can at least wring out some good from it, and God has a knack of helping so much with this…in all of life’s struggles.

    Some of what I learned i think is worthy of embroidering on our underwear so we won’t forget! Or putting on the refigerator to help remind us! Especially because we don’t get DONE! Life isn’t that tidy, I’m afraid! There will be times we cycle away from understanding, and have trouble coping…loss is like that! There are many layers we will be faced with unraveling over the course of our lives, from even one large loss. It’s not that we’ve failed to adjust or cope… or to get to a place of better understanding either! It’s just…there are ripples of our losses with pain that will extend out in time. And we can choose then to learn more, as we grieve again and process all of this from where we now stand, Even as little as we may be able to DO, with our decreased function….life isn’t STATIC! We will have more opportunities to grow, to see how we’re doing, and even be pleased we avoided some earlier “mud puddles” of despair or sadness…because we’ve learned and grown! Or at least jump out of them faster!

    Pain changes us, for sure. Yet it’s our choice whether these changes are positive for us and our life overall…or if pain leaves us standing at the black hole and ignoring all the beauty and goodness life STILL OFFERS. Not an easy job…but so worth it, in my experience! And WE are worth taking care of… and being generous with ourselves when we just aren’t up to coping better. We’re worth safeguarding…by choosing NOT to suffer…from our own rebellion over our new reality with pain and all the uncontrollable goals and limits we have now. Truly we are not our pain, we are wonderful, beautiful human beings, children of our Creator…and we are all loved….and lovable!

  5. Annie at 7:56 am

    I have been and off Narcotics for Decades. Without them, I would be crippled in pain. They allow me to have a life. I workout, volunteer at our Church and get to participate in my family life. Not having access to Narcotics, scares me to death. Literally!

  6. Anne Nickol at 6:36 pm

    Jean, thank you SO much for your words on choosing to suffer or not. It really hit home for me. I realize I am doing this, but I suffer guilt and frustration from not doing the things that will make me suffer more. I need to look at this as choices that keep me going and able to achieve goals that are achievable.

    My family was walking on the beach this past Saturday when we had unseasonably warm weather. I had a foldable stool with me that I took to sit on at the beach, but when everyone started walking down the beach, I did, too. And stopped several times to rest. But when they continued on, I just sat there and watched them until they were out of view, instead on continuing on. I knew going any further and trying to walk back would lead to much pain. After a few minutes of rest, I headed back to the car to sit until they joined me there. I was still able to have the joy of seeing my grandchildren run and dance barefooted in the sand, but I did not push myself. This lesson has been hard learning, but accepting my disability and working with it still allows me to participate in life and have joy. I choose to not suffer any more than I can now. Makes me a happier person. As you stated, everyone has their trials in life. This is one of mine.

    Bless you.
    Anne

  7. Ben Aiken Longfellow at 6:12 pm

    If I would not let the CDC “guideline” get under my skin so bad, I believe I could be in less pain. ??? I have found in the last 25 years that when I get discouraged, the pain seems more intense. I have completely gotten off of opioid medication twice in 25 years. I did so, on my own. No clinics, no suboxen, just tapered off and stopped. Both times I did not last but a couple or weeks or less. I just did not like the idea of being dependent on anything or anybody. I finally realized and my pain management specialist told me and I quote ” take the medicine, that’s what it is for”. So I did. I was always in fear that if I lived to get much older and was placed into a “care center”, would I get sufficient medication.when someone else was dispensing it. I really NEVER seen the “guideline” from the CDC and an opioid epidemic coming. There may be an “opioid epidemic” but I can not believe that the prescribed chronic pain patients are a big factor. I, and 10 million others like me NEED our medication.I do not redistribute the medication I am prescribed because I need to work! I personally can not function very well without medication. I did what the physicians said I needed to do, 2 lower back surgeries. One fusion surgery. I wished that the procedures had made it possible for me to live in less pain. However they did not. So the ortho doctor got a referral to a pain specialist. I will continue to fight, for my right, to be treated, SUFFICIENTLY with medication by my pain specialist! I do not care if I get put on a gov “list”, I have broken no law. Yet I have been found guilty of aiding the “opioid epidemic” along with millions of other innocent, suffering people. I wish I could “go about my business” with or without pain. I can’t say that I have not tried……..twice.

  8. Cheryl D Williams at 5:02 pm

    Jean, How eloquently written. I think I may need to print what you have written to keep as a reminder that it’s okay for me to take better care of myself. Everything you wrote I needed to hear and I want to thank you for posting it.

    Thank you!!!

  9. anne muldowney at 12:21 pm

    Hi Suzanne just to tell my story. I am a glamorous 59 year old n have had cronic since I was 28. Had a diagnosis of fibromyalgia about 10 years ago n have accepted it since then. Recentlly I had brain surgery an anurism clipped n have constant head pain since like a steel helmet. My dentist has suggested a splint as all my neck and facial mucles are n spasm cant b done till june as he is so busy n moving. I dont stop go out every day n volunteer 3 days a week have taken up TM again n hopeing it will help. Practising THE POWER OF NOW by Eckhart Tolle. is also n my life I recommend him.

  10. jerry becker at 11:00 am

    I will my body to obey my mind!!!!-study acting and writing all at pain level 6-7 ( low Back)!!!!–the ability to exhibit courage and determination under extreme adversity is a drug only uuuuuuuuuuuuuu can dispense! For many in pain, like the above writer, this is the hertoic road less traveled!

  11. Suzanne at 10:06 am

    Thank you all so much for your love and support! Maureen I hope you see this most of all! I’d love to be your friend and if you come to find me in my blog that they’ve posted on my articles, maybe we can Skype sometime and you won’t feel so all alone! I do have a loving husband/caregiver and he’s my bff. I am lucky now. I am so greatful and thankful for our 3 granddaughters (7 mos, 2yrs & 4 yrs) and my 2 daughters & they’re husbands. But honestly my oldest daughter has 2 jobs and her hubby works 7 days weekly. My youngest lives an hour away (I can’t drive) and she’s a professor and a technology librarian at a university. Her hubby is home with their baby. I lost one daughter many years ago. I am re-married now (I thank you God for him )& I have PTSD. I first got approved for SSDI in’98 for ptsd & “Battered Women’s Syndrome “! I have a pho of living in a domestic Violence marriage (8 yrs) and the SSDI ppl told my current husband (of 20 yrs) that they think I am “the worst case of childhood trauma/abuse that they’d seen in past 36 yrs!”… I honestly do try to be positive and try not to give up because you just never know what “good” may be around the corner! I actually have one bff who works full time and a couple of “good friends” that I talk to online but rarely get to see. I have no family whatsoever except a cousin! I don’t have parents or siblings or anyone really as far as family. I feel very alone at times! I don’t tell most ppl this. But wanted you to know so that things aren’t always as they appear.. I try to keep positive but I have hard days and feel alone sometimes too. Before my hubby now, I was very alone. Together we have each other… but my girls are very busy and have their own lives. I can’t drive and my husband is a teacher and he has to take off work to take me to Dr each time. Luckily he’s off in summer time. I try to do most appts then or during his Xmas break. Please don’t feel too alone because I will be your friend gladly!! Reach out to me and I’ll help you!!

  12. Becky at 9:26 am

    I admire your courage. Thank you for sharing. I am still trying to remember to be happy for what I can do, instead of dwelling on what I cannot do. I too have lost friendships due to cancelling many times. I never know day to day how much pain I will have to deal with, or how soon I will be tired. I do not get out everyday. I am staying with a friend. She is same age as I am but still working and healthy. It hurts so bad when she talks about going out and doing things like shopping and snowshoeing. I have been trying to adopt new hobbies reading and crochet. I now realize I will never be the person I was before. With rheumatoid arthritis and severe degenerative discipline disease and extensive spinal stenosis I must listen to my body and adapt. Thank you again for sharing. It helps me to hear others also deal with daily struggles. Maybe I can learn something new.

  13. Kim at 9:05 am

    I admire your motivation! I too strive for 1 achievement a day, and depending on the day, I have to adjust the scope of the achievement. Thank you for includin the link to the Spoon analogy… is a great way to try to help ppl understand livin with chronic pain or other disability!

  14. Michelle Garcia at 8:56 am

    Thank you, Suzanne, for all you do for us suffering from chronic pain when no else truly understands us. I can totally relate to your article. Everyday it is a struggle. I have no family and no friends and spend my days alone. I do have my animals, 2 beagles, a cockatiel, and a turtle that bring me joy. I do wish I had your fighting spirit. I am just so tired of the pain and I just give up. I would very much love to join one of your support groups. I need help. Thank you for this article as it truly describes our daily struggles. Hugs to you.🕊

  15. Jean Price at 8:52 am

    A dear and learned friend and I were talking about pain once…all types of pain, not just physical pain. And she put a new perspective on my decisions in life…and gave me some spiritual insight of surviving it and even enjoying it more, too. She said…pain happens. Life HAS its trial and tribulations and bodies become worn, injured, and ill…plus our minds and spirits are hurt from any number of happenings, life changes and the resulting losses and griefs…plus our relationships also can be painful at times. Yet SUFFERING itself is a CHOICE!

    Of course, I instantly reacted to this idea! Whoa! Wait a minute…why would anyone CHOSE to suffer, right?! Why would I myself, since I already had way too much pain to easily cope with!!

    Yet she went on to clarify this and offered her definition of suffering here…it is when we CHOOSE to REBEL against UNCONTROLLABLE goals. Seemed simple enough of a definition, yet I wasn’t clear how this fit with pain, my pain. And then she said…if you have pain and are unable to function at the level you WANT, and you CHOSE to still push and keep pushing yourself to do the things that have become extremely difficult now…to meet an uncontrollable goal, as if you WEREN’T really physically compromised…then you suffer! Or when you also choose to NOT spend the needed time resting and refueling yourself, giving yourself some breaks from the worst intensity of pain…then you CHOOSE TO SUFFER, since the CONSEQUENCES ARE MORE PAIN!! And because of your pain, you’ll likely have emotions which hurt…and affect your relating to others, which can also ADD more hurtful feelings AND CREATE MORE SUFFERING.

    Hmmm, well, I think there IS a lot of truth to ponder here! And I have, once I got over the shock of thinking I could possibly choose to suffer!! We all know that we do push ourselves…it’s hard to resign ourselves to bed or to having much less activity than even the basic daily, most minimal life calls for. It’s hard to have enforced rest times unless we’re just maxed out with overdoing or worse episodes of pain! Yet, I have to admit, we DO often chose to rebel against the reality of our pain, of the uncontrollable goal of living life as if we didn’t have pain…in ways that cause us to suffer, to hurt more…and we also feel much more emotional pain as we become affected by our decisions!

    There is also a lot of the theory of hyper-responsibility mixed up in this too…asking more of ourselves and our bodies than we know we CAN actually do. Asking more than God intended, if I put this in spiritual language! It’s like we are touching the Ark…doing more than asked to do! This always seems to diminish us, and leave us unable to even do the smaller things we MUST do, or the things we really WANT to do, ultimately to even care for ourselves.

    So how do we keep from suffering, from choosing to rebel against the reality and the limits of our pain? It’s truly an individual process, and each of us likely has some things in life we believe are actually WORTH more pain…we must just learn to AVOID choosing all of them on the same day, though! Or day after day! That can flatten us! It helps to remember it was our choice, when we are hurting more…and try to remember and enjoy any good benefits or good feelings we gained from our rebellion! We do learn over time what’s really NOT worth our suffering! So we choose a different path, a different solution, a better way to get the most out of life without rebelling so much against our bodies, and our circumstances! We can also find ways that may cause increased pain, yet give us a big ENOUGH lift to at least compensate, or things we can more easily recover from! In other words…we learn to stop ALWAYS rebelling against our pain!

    The controllable versus uncontrollable goal is important to understand in all of this. Controllable means we have the desire, and ALL the resources necessary, (INCLUDING the permission if that’s needed)…to work toward something achievable. Uncontrollable means we don’t have some of these necessary requirements, or maybe any of them…OR what we want isn’t realistically achievable! Resources are mostly what those of us in pain lack when we bump into uncontrollable goals, and often we avoid looking at this…we choose to rebel! Yet we can also have unacheivable goals, things that aren’t humanly possible for us! Whether our lack is time, energy, stamina, ability, less pain at the time, or even finances…we can know going into it whether we are short of what’s needed, maybe even totally without much of what’s necessary!! The rebelling part comes from going ahead anyway, and it’s that choice of ours which creates the suffering.

    As this article says…we are NOT our pain, for certain. Yet we DO have pain, and all the varying limits this brings. We can learn to navigate each day to the best of our ability and learn to make the choices we can best live with…and survive. We CAN find bits of joy, camaraderie, beauty, fun, wisdom, love, and all types of goodness along the way…especially if we pick and choose our times of rebellion with care. Pain happens…yet we have SOME control over suffering, of having more pain…through our choices and in understanding ourselves and what is realistic at the time. This isn’t so different really for all who live life, even without pain! We make choices which affect us daily, and impact us and others, too. So, it’s important to realize and weigh all the possible consequences and perhaps limit the times we may choose to rebel. And give ourselves a generous amount of time to rest and recuperate in Between! This can mean more abundant living…more times of joy, DESPITE our pain! And less times of harm! Yet isn’t that the goal for anyone in life?! We’re not so different really, we just have to get really good at caring for ourselves…and we’re so worth that effort!

  16. Anne at 7:44 am

    So very well said! You hit the nail on the head for the best way to try living for those of us in chronic pain. To try and do something special each day is so important. We could all just give up and spend our lives in bed or our chair, but that is not living. And depression will pursue us if we live like that.

    My 2 daughters and their families really motivate to keep going. My 3 grandchildren bring so much joy to my life, despite the pain.

    I make myself get up early each week to go to my morning oil painting class. To lift my spirits, have a social outlet, and give me a purpose throughout the week, trying to work on a painting the class is doing. Rising at 7:00 in the morning and showering is so very difficult for me, but the rewards are worth it.

  17. Maureen at 7:08 am

    Hi Suzanne, I have to admit…I’ve wondered the same.
    I’ve tried to put myself in your shoes given all that you do and see if I could ever do the same. Kudos to you! You are a ‘go getter’ for sure!
    What I get from your post is that you find a decent balance in it all.
    You are a positive thinker and most importantly of all…you seem to have a very good support system, both family and friends. You are very blessed.
    Distraction is a big key to help get through our days.
    I believe that a lot of us do not have that support system, whatsoever. And in it lies living life in pain a whole lot more difficult.
    For example, I’ve had a back spasm for 3 days…I’d give anything just to have someone’s hand on it to help rub it out. Or to make me a meal, or go to the store for me.
    I’ve heard myself say many times…I just need a hug today and I’d feel much better.
    I can go 2-3 weeks at times not being with another human being.
    That alone can keep pain levels high.
    I too work hard at finding joy, within my ‘all alone’ world.
    I think I do a good enough job at it 🙂 Although, it is exhausting!
    But some days… it’s just not natural to be so alone, especially because I’m a ‘people person’ and have a happy spirit. And therefore it becomes torture.
    So, I self entertain and try to find things to laugh at! 🙂
    Such is life and God gets me through it all. I admire your spunk and good attitude!

  18. Kristine Lund at 5:57 am

    Thank you for your article. I to deal with intractible pain due to my collapsing spine from Osteoporosis. I am struck by your courage and want to thank you for getting up everyday and doing your best. That is a gift you are giving everyone who loves you. Your attitude also encourages me to take heart and know I am not alone. Being ill is very isolating. I used to be a teacher and therapist and absolutely love people. I know longer do those things and have many moments of lonliness stuck in my bed trying to relieve myself enough to feel better to get up again. I fight hard to have a good day everyday and show up for the ones I love. It is difficult when I was used to doing all the care giving and the leader of my family. I have to ask for alot of help and do not like the side effects from the pain meds. I have recently tried medical marijuana but again having a fuzy mind is challenging when you are used to thinking clear. I am grateful for the meds but they have an end game which overtime have to be addressed for me. I am tolerant and hopefully with my next refusion I will be able to get off them. If you have tricks or any other ways you have learned to cope I would love to hear them. Thank you for giving people like me a voice. I am only 51 and probably will live quite a few years this way so I am invested in and all information dealing with chronic pain.

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