Awareness Is Good, Distraction is Better

Awareness Is Good, Distraction is Better

by Suzanne Burnett Stewart

suzanne-burnett-stewart

Suzanne Burnett Stewart

Welcome to Complex Regional Pain Syndrome Awareness Month!  It is November, known also as “KNOWvember” and “Nervember” by different pain support persons & groups.  It’s that time of the year when chronic pain patients, Ambassadors, Delegates, pain warriors, and many people who live with this illness, try to reach out to friends, family, the rest of the pain community and the non-pain community;  to spread information and gain support of this horribly painful disease.

We post about the fire-like pain and debilitating symptoms of this nerve and neuro-autoimmune illness.  I think that some of the others who are our “friends” on Social media get really tired of seeing post after post about pain, illness, and unrelenting symptoms that keep us from living life fully, as most of them get to do.  We aren’t trying to take over Facebook or Instagram.  We are trying to help others to understand what we are going through.  Because nobody knows, unless they truly live with this tremendous amount of daily pain.  We see your posts about where you are going and what you’re doing.  The trips you take and the places you get to visit.  We read about you in the car driving here, there and everywhere; or being at your child’s school events.  We scroll down to see the many family members who never even speak to us or even know that we live in daily pain, nor do they ever ask about it or us.  We notice the friends who seemed close at one time but after awhile they, too got tired of listening about our pain.

This month is for us!  This is a time of teaching, preaching, tweeting and posting.  Social media is a great avenue to speak about CRPS and this is a special time of year for those of us who live with this on a daily basis.  We actually take this time, not to lament about being in chronic daily pain.  We are not complaining or posting of our daily struggles with this “monster.”  NO…we are CELEBRATING ourselves because we can!  November 7th, was “Color the World Orange Day,” and we celebrate the color “ORANGE” as it is the awareness color of our illness.  It’s what brings many of us together.  If we are not “celebrating”, then we should be. For one reason or another we are affected by chronic pain. Nobody really knows why any of us were allowed to “get” this painful nerve disease.  It is OK to be sad about it sometimes.  Take some time to be sad if you need to and then push that sadness aside and do something to help yourself and others.  Actually, helping others is a great way to feel better about things in your own life.

There are so many things that we can use as distractions from our own chronic pain on a daily basis.  The more you sit and do nothing, the more you wither away into the dark abyss of pain, sadness and nothingness.  The more you try, the more you do and the more you can be positive; the better life you will have.  Honestly, sometimes I admit that I overdo it and then I “pay” for it later, with much higher pain.  I’m not saying to do what I do.  That’s actually going too much the other way at times and honestly, I don’t want that for anyone one either.  But there’s a “happy medium” someplace in between laying on the bed and/or couch all day and going, going and doing too much until you are in tears because you’re exhausted.  This month we are a bit more “busy” chatting and posting about CRPS awareness, but then the rest of the year we should try to do some other things to help ourselves to be happier.  Of course, I’m not saying STOP advocating, spreading awareness and doing events, fundraisers etc. for CRPS or any other chronic pain illness that you live with.  I’m just saying that we need to have a life outside of illness, chronic pain and CRPS.

There are things that we can do to distract ourselves from the gnawing, burning, aching and throbbing of this “thing” called Chronic pain and/or CRPS.  It wants to take over our lives and it will if we allow that to happen.  The worst thing that you can do for yourself, is to get in with a group of others living with chronic pain, that are negative, competing to be the sickest and who want to bring you down with them.  Instead let’s bring them “UP”, cheer them and ourselves at the same time.  Find something that you used to enjoy and modify it to a way that you can start doing it again.  For example, I used to be an Interpreter for the Deaf at a major University hospital and several school districts.  I lost that after the car accident and I went from Interpreter for the Deaf to Hearing Impaired with 2 hearing aids!  I was in performance sign language groups and ASL was a huge part of my life! I thought it was over and gone.  Now i make Artistic Sign Language videos on You Tube.  I try to find uplifting songs with rallying lyrics and I learn the words first and then just sign the song as emotional as possible while taping it.  If I choose the right song, it seems to really resonate with people.  It makes them feel emotional in a good way.  Sure, I have extra pain when I’m finished, but there are things that I can do to help myself.

Distractions are good if you just don’t overdo it!  If you like to be artistic with painting or drawing, you can choose one of those awesome coloring books that they have now for adults too!  I thought that I was unable to do that also.  My hands hurt as the CRPS and the RA/OA has really gone to my hands and they hurt after just a little while of holding a pen or a pencil.  The remedy for that?  Find the kind of crayons, markers or colored pencils that are very “chubby” and better for holding onto when you’re in pain.  You could also get that “molding material” that is at the craft stores and put it around your favorite coloring utensils; this way making them as thick or thin as you need.  There are also little rubber stoppers that you can buy at the school supplies section, to put around the markers or colored pencils.  If you like to be on the computer, but you have a hard time using your hands, try the “talk and text” option.  You may even get a good laugh out of some things that pop up wrongly when you use it.  You can that way fix just a few things instead of having to write everything that you wish to write.  There are programs for your desktop or laptop, one in particular that I know about, called “Dragon.”  It is much better at being precise and it’s not horribly expensive.  If it is too much money for you, then ask for that as a gift from several people for Christmas or your Birthday present.

There are so many things that we can do to distract from the chronic nerve pain that we know is there and we feel every day.  It will be there waiting for you when you are done, but for a little while it will be a bit more distant in your mind, instead of at the forefront.  There are things such as:  knitting, crocheting, painting, drawing, writing, speaking, coloring, “playing” games on the computer, social media, reading and even something like photography.  You don’t have to be a professional photographer, but if you enjoy photos, like I do, there are so many free apps (pic collage, Rhonna Designs etc.) to download and “play” with your pictures.  If you need relaxing, there are applications such as “Pacifica” that help you relax to different time allotments and music choices.  There are even photography apps where you get a prompt daily and you get to be creative in taking a picture and posting it to their website (500px, Little Moments).  Some other things you can do might be to learn a language or at least a few new words in a language that interests you?  You can do as much or as little as you are able to do and try to take a few moments each day to NOT think about your pain, illness and the next Dr. appointment coming up.

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth”(suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 15 comments for this article
  1. SandraG at 10:15 am

    Has anyone got any letters back for your Polititicans . They really don’t know what is happening unless we tell them. They have no idea. That is the only way we will be heard. Please post when you send letters or communicate.
    SandraG

  2. Suzanne at 7:25 am

    Hi Scott,
    I think if I were you, I’d go to CDC.gov and look at the guidelines and take thAt to your PCP Dr. Show her that these are not laws but guidelines for NEWLY DX pain patients just starting out, & not for someone who’s been on pain meds for years! If you find a legitimate pain dr board certified and one who has a conscience and respect for ppl in pain; they would help you Id bet! Google all of the articles that you can which are positive about us. Tell them ” we don’t crave the meds, we do not get a high from the meds”! Those are addictive behaviors! But for those who suffer & live with chronic pain, we are only dependent on our pain meds. Much like a diabetic must take insulin to survive, or someone with high BP needs meds to live & they cannot be stopped abruptly. Untreated pain can kill! Take this to your Dr! I hope I’ve helped in some small way!

  3. scott michaels at 5:15 pm

    Today is woke up, generally that would be a good thing. Unforunately, si e my dr ha sbeen reducing the pain medicine i have been taking for 7 years by 10% monthly.
    The second month began on the 23rd. As i stepped out of bed, both feel felt like i was standing on spikes. I could not streaightn my back and the pain in my neck, which started this whole thing was equal to that of a chisle being pounded in my neck. My PCP says shes sorry about the pain but there is nothing she could do. I said yes there is. Put me back on the medication that has worked for me. She said Kaiser wont allow it. The only paingt facility is 60 miles away and its is not a pain mgt clinic. It is a psychologist basically twlling you the medicine isnt making you feel better. its all in your head. They wanted me to come 5 days a week for group meetings. I told her they are just running a narcotics annonomys meeting, and charging for it.
    I told her i am not an addict, i dont drug seek or doctor shop and i take my medicine as directed. I TOLD HER THE CDC GUIDELINES ARE VOLUNTATY AND THE FACT THAT KAISER IS PARTICIPATING ONLY TELLS ME THEY DO T CARE ABOUT THEIR PATIENTS PAIN. THEY SEE THIS AS A WAY TO PRESCRIBE 75 TO 90% less medication, therefore saving 10s if not hundreds of millions of dollars. WHAT A CONFLICT OF INTEREST!
    I demanded a referral to a real pain management clinic that is close toy home. My wife now has to work 60 hours a week because im in too much pain. The PCP SAID SHELL GIVE ME A 1 TIME REFERRAL TO KAISER PAIN MGT AND ONLY THEY CAN REFER ME TO AN OUT OF KAISER pain mgt doctor.
    Any suggestions for me to persuade this doctor for a referral. If i do t get it i am going to be bedriddwn by February and i am afraid i will seek other methods to obtain pain medication.

  4. Suzanne Stewart at 12:03 pm

    Yes, Jean, that’s what I meant exactly! I am pretty sick, with 20+ conditions and 18 of them are pain conditions. mainly full-body/systemic CRPS! I have recently been DX with Gastroparesis, SIBO and chronic fatigue syndrome. These to add to my other terribly painful & autoimmune illnesses. I only meant that I sit in my lazy boy chair & when I’m able; I do my best to distract or try to think of other things to fill my time and my head, rather than pain only. I even mentioned an app called “Pacifica” in which you just listen to calming sounds etc. So many of these distractions are only trying to think differently or about other things. Also, Cherri, I am a big advocate and in a group in which we advocate re: pain meds/Opioids. I think Terry was just referring to what’s been happening this past year or so. I agree it’s terrible what they’re doing to us and I’m doing something about it! I’m sending letters and have made advocacy videos (at my You Tube channel -Suzydukettes) & have sent them to Anderson Cooper & CNN etc! I’m an Ambassador for US Pain Foundation & I visited A pain Summit his Summer. It was to help to teach me how to even do more to help myself and others re: many different pain advocacy issues, but also how to get something done & advocate about this opioid issue! I’m with you all in this!! I’m not giving up because dependency and addiction are 100% different & worlds apart! We do not get high from our pain medications! We don’t crave them, but our body is dependent physically. Just as people who take high BP meds or insulin can’t stop taking those, we can’t stop taking our needed medicine either! I just want to help but I do take care of myself first.

  5. Jean Price at 9:14 am

    We each have to find the best options for ourselves…whatever therapy we’re talking about. Some work some of the time, none work all of the time! So being creative and trying what may not have worked “last time” pain was out of control is just as important as trying what did work!! Distraction is great…only sometimes it’s NOT possible. I have always used my plants and also baking and cooking for distraction…now I am not able to do either. So it has become writing to distract my mind…. yet often even that is difficult if I’m hurting in every position!! And sometimes taking a pill doesn’t give help much, especially with over the top nerve pain or positional pain…it’s more likely shifting positions will be equally effective, or ice or heat! Maybe even a good cry!! Prayer is another main therapy and lifeline for me, as is imaging. It always boosts my coping and even on my worst days, I can muster the energy to do this…at least briefly. The biggest issue I see for all of us….is that we need access to ALL of the options for treating pain…not just some and certainly not a one size fits all approach!! That would make sense, wouldn’t it? However, the current climate of pain care is truly senseless…so it’s ineffective to fight with common sense!! We must think outside the box, and look for other ways to change all this, since what “should be, could be, or would be” relies on a foundation of common sense and scientific/medical sense…both of which are missing these days in our entire health care system and many of our doctors offices, not to mention the governmental agencies involved here!!

  6. Cheri Furr at 2:23 pm

    Terry-as a legitimate suffer of CRPS, no level of opiod-medication has ever made me “high”! Have any of ever felt the least bit “high”? It’s ridiculous. The only people who get high are the addicts and drug seekers, & it also infuriates me that the CDC & FDA cannot distinguish between chronic pain sufferers and straight out addicts. My personal physician knows a lot more about my health and needs of the government. All they will get from this is MORE heroin addiction, because it is not a prescribed medication that can be tracked!! What they will see is more suicides from chronjc-pain suffers who cannot take it any more.

  7. Lisa Webb at 2:54 am

    I just shared this on FB because I have a few people, me included that are fighting this monster. I actually color almost every night and it DOES keep your mind busy and off of your pain and sadness, even if only for a little while! !

  8. Dooney at 7:32 pm

    I totally get how you overdo it and then pay for it later. In my case, I think when I feel halfway decent I just want to get everything done I can or work on things that I can because of my pain is ok. I just want to FEEL NORMAL. Like my old self.

    Anyone suffering from CRPS, my heart goes out to you. I was diagnosed with this by some quack years ago (I say this for many reasons I won’t elaborate on) . Although it was nerve related I didnt have any CRPS symptoms, nothing even close. Sorry also to anyone getting a med reduction for this very very painful condition.

  9. Suzanne Stewart at 7:09 pm

    Awww Terry I’m so sorry! I’m in that same “boat” in that I went Thru physical withdrawals a year ago when my GP left suddenly! I’m on so much less medication now. I only have a few good hours per day and all of the things that I try to do to distract myself is done from my lazy boy chair. I do have days when I can’t do anything but I want to give people ideas to keep their spirits up . Even if their mood is helped a bit and for just a little while. I want to let people know that life is still with living even with horrible pain! Like my favorite advocate, Helen Keller once said, “I am only one, but I’m still one and I will not refuse to do something I can do”……. I’m not any different from anyone else but I think we go in different stages…. I’m here if you need a friend!

  10. Donna Rubinetti at 2:49 pm

    I am so impressed with all of you who have the capacity to distract yourselves from this horrible illness. I too have full body crps. The nerves in the soles of my feet make me feel as though I’m standing on hot rocks. I have searing hot pain in my butt and lower spine making it hard to sit and even lie down. Crps raps around my right shoulder and armpit. So I’m always jumping around like a cricket. I feel bad about myself because I feel deficient. I really admire you. I’ve tried different things to distract myself to no avail. Where do all of you find your strength and positive attitude? This disorder is a living hell!

  11. Suzanne Stewart at 1:48 pm

    Oh that’s exactly what I meant when writing this article, Amy Frank. I never would presume to tell someone to do something when they’re incapable, due to being in the throws of a pain flare. Sandra. I only was trying to give chronic pain patients, ideas of some quiet type of “sit-down” things they can try if or when they feel up to it . Even with my full body, CRPS, Arnold Chiari, RA & OA, plus Gastroparesis etc.; there are times when I just cannot sit or lie down for another moment. That’s what I meant as far as giving ideas for distractions and never to try to do more than you’re able,in possibility of causing a flare!!

  12. Terry at 11:50 am

    I have been in constant pain for 25+ years around the clock. I can’t sleep until I’m faced with pure exhaustion and then I go to sleep for an hour or so.
    I’m fed up with our government about trying to take us off or cut severely down on our pain meds. Believe me if I wasn’t in severe pain I wouldn’t need anything. Before when I was taking my meds as prescribed I was on 60 mg., every 12 hours. Then the CDC stepped in along with the government and drastically reduced it to 30 mg, every 8 hours.With the other dose I was able to push through and have a halfway decent life with my family going once in a while to do things with them. Now I can barely walk and have to resort to my wheelchair as I’m not able to walk for very long.
    Another thing; all these drug addicts chasing their highs are partly the reason we can’t get our pain meds. They say people are dying in record numbers but that’s their choice chasing a high. I don’t think legitimate pain sufferers should be discriminated against because of that! If a person takes their meds as prescribed there is no way they will become as they say “Hooked on them”…or having some beaurecrat sitting in an office whom has never experienced chronic pain saying we should all be cut down or out!
    This is so wrong on so many levels!
    Sorry to write so much but I’m fed up!

  13. Sandrag at 10:01 am

    One must be careful telling others what to do with pain. Some people are in such deep pain they have nothing left to be able to think about. Sure they would love to pick up colors and be positive. Sometimes they are in to much pain .we just have to listen to them and love them. Help when we can.

  14. Amy Frank at 3:31 am

    I really liked hearing about this. The article affirms what I do to try to make it through my daily horrible pain. I was lucky. Because I can hardly turn pages of a book to read the Library for the Blind and Handicapped gave me a talking book and I get books in the mail right to my door. This was such a God send. The talking book has a button that lets me time when the books will turn off. So when I am trying to sleep and the pain is keeping me awake. I just put on a funny book. Some of my favorites are the “Cat who series
    These books are so funny and they really help to occupy my mind enough that I can get some sleep. And the funny books lift my spirit because they are funny and make me laugh to spite my self or should I say despite the pain.

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