What’s More Pain….

  

So listen, I’m sure I am not the only person that routinely gets that one dreaded question from well meaning family members and friends. You know the question I’m talking about, right? Surely you do. You know, “why would you eat that knowing it would make you sick?” Another version, “why would you push yourself so hard without resting knowing it would make you sick?” While the wording may vary, the real message behind the words remain the same. The message, loosely translated, “why do you do things to make yourself sicker than you already are?”

The translated message seems pretty harsh, huh? Well, it is…though it likely wasn’t intended to be. I don’t know about you, but it REALLY grinds my gears when people ask me questions like that. Don’t get me wrong, I really do appreciate my family and friend’s concern about my well being. But, on behalf of people everywhere that battle with chronic illness and pain, it’s time for a heart to heart. Now, while I can only speak for myself, I think most people in my same situation would agree with what I am about to type. Here goes. In the absence of mental illness, no one will EVER be more invested in my well being than I am. Said another way and broader to capture more people, in the absence of mental illness, you will never be more invested in the well being of a person battling chronic illness and pain, than the person themself. If you still are not picking up what I’m putting down, let me give you some more background. 

Something in our society has made us, (I include myself because I am guilty of this as well), believe that we know what is best for those around us. Friends, this is a dangerous, insulting, rude, and ridiculous mindset to have. In your effort to help and care for those around you, you MUST fight the urge to take on what I call the “paternalistic I know what’s better for your health persona.” See, as you already know, with chronic illness and pain there is more than what meets the eye. So along with that, what may look like a woman pushing herself beyond reasonable limits, for example, may be a woman making a conscious decision to enjoy a day of reduced pain because she doesn’t know if she will ever have another one again on this side of the dirt. BOOM!!! I sense that minds around the world are being blown left and right. Now, I know, I know, what you just read is hard to imagine, but I assure you it’s true. 

See, contrary to popular belief, people that battle chronic illness and pain don’t automatically lose their mind and sense of self preservation. We, yep I include myself, we, are still very much capable of determining what is in our best interest. So, what may look like a failure or inability to set reasonable limits, may be a conscious and calculated decision. The take away, start a discussion rather than an assumption. 

I am quite sure you can sense the agitation behind my words. Well friends, this is a conversation I have to constantly have…and it’s exhausting. Frankly, I am fresh out of nice responses on this subject. So, when I am asked the question “why wouldn’t you rest when you know you will get sick” or something similar, I have developed a response. My response, “additional pain to someone battling chronic pain is NOTHING, especially if enduring that additional pain means I actually get to enjoy a little bitty piece of life.” Loose translation, additional pain to someone who’s pain is already at a 11 on a 10 point scale, is nothing! Mind blowing, right? Well, hold on to your hats and hair because I am not done. See, I am sure it is hard to imagine a life where you have to conserve energy for weeks just to attend a two hour event, or live in constant pain that leaves you unable to walk, care for yourself, or work. But, that is everyday life for MILLIONS, yes MILLIONS of people.  

Every time I see my doctor I am asked “what is your pain on a scale of 1 to 10”. My answer, 11. Yes, my pain is ALWAYS at an 11. Now, I know some of you are thinking “um, if the scale stops at 10, it is not possible to have pain that registers at 11.” Well, to you, I say “JUMP OUT A 1OTH FLOOR WINDOW, LAND FACE DOWN ON THE CONCRETE AND SURVIVE BUT BRAKE EVERY BONE IN YOUR BODY EXCEPT YOUR PINKY, AND LAND ON BROKEN GLASS AS YOUR BODY MEETS THE CONCRETE. Then, tell me what your pain level is on a scale of 1 to 10”. I assure you no one answering that question will say a 10.

Here’s my thing, people always seem to get agitated when a person rates their pain higher than the scale goes, but no one ever gets upset about being asked to use a stupid imaginary scale to rate real pain. IT’S AN IMAGINARY SCALE PEOPLE!!! I have searched high and low, and could not find a pain scale of 1 to 10 available for purchase anywhere. I’ve looked for this thing at stores, doctor’s offices, and could not find one anywhere. I periodically run into a nice little picture with faces to demonstrate pain, but have found nothing that can truly assess a person’s internal pain. My conclusion, which I have already shared, THE SCALE IS IMAGINARY. But, I digress. 

Given that I, like millions of other people, CONSTANTLY live with a pain off the pain scale, any day that my pain actually is on the scale will be a day spent doing every single thing I have missed. After 30 plus years of living with horrible pain, I have learned that even if I do everything the doctors tell me to do, my pain will return at some point. So, a day of reduced pain should be spent enjoying life, in my own way, because I never know when I will have that opportunity again. So, that may be a day I eat hot cheese popcorn because I have been without popcorn for over 5 years, or a day where I go to the mall and just walk around because I have been unable to do that for months. I may get up and cook breakfast and dinner for my family because they have spent the last 8-10 months eating quick meals or take out. But, as the support system, I simply need you to recognize what’s happening and let me be the keeper of my limits. 

Support systems, please don’t take this and think it means to stop caring. NO, this should motivate you to start conversations with those around you living with chronic illness pain. Rather than singlehandedly trying to determine what your loved ones and friends need, ask them. Also, rather than sitting in judgment and condemning them for “doing things that make them sick”, help them celebrate the reduced day, minute, or hour of pain. 


18 thoughts on “What’s More Pain….

  1. What you said/wrote definitely needs to be expressed more. We know that our loved ones mean well, but instead of assuming, they should take more time to simply try to understand our point of view and, like you perfectly put it, “help [us] celebrate the reduced day, minute, or hour of pain.”

    Liked by 1 person

    1. Thank you so much! I get too that loved ones are in a bad spot when watching someone they love battle chronic illness and pain. But, I cannot stress the importance of talking. No assumptions…just talking.

      Liked by 1 person

  2. Guilty as charged but luckily, I have had you to consult about it and it has softened me toward my Fibromyalgic mom. Now if you could just get her to quit saying things about my eating, I would appreciate it. I have after all lost 17 pounds without her lectures. In fairness, I do set my boundaries and she backs off.

    Liked by 1 person

  3. “IT’S AN IMAGINARY SCALE!” Duh! People do mean well, but I find myself wanting to smack folks on a regular basis.

    I’m pretty low on the actual imaginary “pain” scale most of the time, but high on the “pain in the ass” scale; I never know what combination of foods, drinks, stress, and star alignment will force me to spend a night or a day in the bathroom. It changes constantly, which is annoying as all get-out. But still folks comment on what I should and should not eat. I am quite overweight because the healthy things I miss so very much make me sick — I ate a salad for lunch just last Monday. Oh, it was wonderful. And then for the rest of the week I paid dearly. Oy!

    I’m sorry you are and have been having such a hard time. Disease — any disease — just sucks. Stay well-ish. 😉

    Liked by 2 people

    1. Thanks so much! God this is so maddening! See, I am on the other end of the spectrum. I am VERY thin, even after two kids because I am malnourished. My body doesn’t absorb the nutrients from food like it should, so I am constantly underweight which also means VERY low energy. I definitely understand the battle with food…and hate that you have to deal with that.

      Liked by 2 people

      1. I know — Crohn’s just sucks, no matter how you package it.

        My doctor keeps telling me that I am better off as the only fat Crohn’s patient on the planet … but I still have the fatigue issue — diarrhea does that to a girl …

        I have a draft post about the things folks say to a patient. Hasn’t jelled yet …

        Liked by 2 people

      2. OMG! I would say I can’t even believe your doctor would say such a thing…but NOTHING from doctors surprises me these days. Would LOVE to read your post…I know it will be amazing. People, even doctors, say the dumbest things to crohnies.

        Liked by 1 person

      3. No,no. I wasn’t clear. I am the one saying I’m fat — my doctor isn’t! But she does, ever so tactfully, tell me that the very thin patients have it worse than me. (My doctor is a star. I adore her)

        Liked by 1 person

      4. My endocrinologist was not so kind … and was fired.

        SHE kept telling me I had to go swimming every day.

        “I’M INCONTINENT!”

        “Swimming is the only exercise that won’t cause other problems…”

        “Do you want me in YOUR POOL?” shut her up.

        Like

  4. Boy oh boy did you hit the nail on the head..
    I really enjoyed reading this since it rang so true with me like you are in my head and so relate able NOW GET OUT OF MY HEAD!!..lol…
    I know no one gets it at all unless THEY THEMSELVES LIVE IN PAIN OR HAVE MENTAL ILLNESS OR OTHER PROBLEMS ALL OF THE TIME!!!..
    Yes we do have a lil better days but they are so far in between and when they do happen we want to try our best to feel “normal” and to try and do the things that we once did with out pain etc
    I hate getting well you look fine so it must be all in that head of yours or it is just depression..F@ck that shitt and as a matter of fact yes I do have depression and pain and YES it is real so I write down or tell them to google it for the love of GOD but each time I still get oh nothing wrong with you…
    So I have had to take care of myself and take some negative out of my life not just from this but other shitt they have done to us so we have nothing to do with that side of the family any longer and it is for the best. We just take care of the 3 of us….
    I feel your pain and understand and again I could read this again and probably will….
    Thank you for sharing such an amazing blog..
    Hugs
    Suzette
    I did not mean to get carried away….

    Liked by 1 person

    1. Lol!! NO, PLEASE don’t feel like you got carried away. That is why I wrote it…SPEAK YOUR MIND FREELY!! I get tired of putting up with this shit!! IT is seriously maddening! I too have had to distance myself from people, even family members. Some people mean well, but some people are just cruel. I am reached a point a while ago where I decided I was done explaining my pain and exhaustion. If people don’t get it…fine they don’t have to. I am the gatekeeper of my limitations and I am done explaining myself because it serves no point. For the people in my life genuinely interested in learning and understanding, I take the time out to teach…but others can kick rocks with no shoes on! Thank you so much for continuing to read and support!

      Liked by 1 person

      1. Ok Thank you so much for such kind words and the warm welcome 🙂 I do have the tendency to go on and on and ramble on lol it is just me I have always been like that…
        It is maddening and very frustrating to me as well….It is sad for me to say this but it is true since you are saying it too about how people with illnesses that you can not really see that we have to distance our self from family and friends so knowing you had to do this makes me feel better sad but better at least we are not alone with that issue …..
        Most of our so called family and friends do not mean well they do it to hurt you and they just do not give a fuck and that is the truth
        OH I LOVE THAT SAYING “I AM THE GATEKEEPER OF MY LIMITATIONS AND I AM DONE EXPLAINING MYSELF!!!!!!” First we should not have to time after time and another thing do not ask someone about my health or even me when you are just pretending to give a fuck!…
        I have my dad and my guy that always ask and care my guy takes me to all my Dr appointments so he knows what the Dr has said and helps me explain it to them then when we get home we explain it to dad or in the morning during coffee time lol…
        Yes they all can kick rocks with no shoes on lol love that and I hope it hurts like hell for them…
        Well I hope that you are having a good Saturday my friend and I wish you happiness and also hope you keep in touch… 🙂
        You are most welcome and I will continue to read and support you..
        Hugs
        Suzette : )

        Liked by 1 person

      2. No, no, feel free to speak your mind and heart ANYTIME! My Saturday was pretty good. Spent the day at the Zoo with my kiddos…and now I am not feeling so hot. Life of chronic illness and pain. 3 hours of fun ends in days of pain or a hospitalization. Just woke from a 5 hour nap…and headed back to bed. Hoping I will wake feeling better without a hospital checkin…mine usually result in 3 day min stays.

        Liked by 1 person

      3. Thank you 🙂 I usually do that is just me I’m honest I do speak my mind so it is great to have another person like you that does the same thing…
        Glad to hear you had a fun filled Saturday with the kids how I remember when my daughter was young taking her to the zoo it was so much fun. I’m sure that they enjoyed every second of it and have those memories for life…
        So sorry to hear that you are in pain I do understand I feel for you..I hope that you have less pain gurl I hate how pain dictates our life …I hope n pray that you do not end up in the hospital and if you do go please let me know ahead of going if you are able to..if not again I understand …
        Well those naps we have to listen too right lol either way hate them or love them… Oh headed back to bed again well I wish you rest and please hang in there that is what I do best lol…
        Huggs to you my friend
        Suzette

        Like

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