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A Day in the Life of a Person with Chronic Pain

dilaurodilauro ConnecticutPosts: 10,054
edited 06/11/2012 - 7:24 AM in Chronic Pain
Ever look back and try to 'map' out a day you have had?

Early Morning You start to wake up, though its a bit later in the morning than you used to. When you first open your eyes, there is some grogginess (from your previous nights meds) and your head hurts a bit. You slowly move your feet over the bed and onto the floor. That takes about 10 minutes. You then get enough courage to stand up. That might take 4 or 5 tries, but you finally succeed!. Ok, now that you are standing, whats next? You try to take a few steps. The first 3 drive pain all over your body. You just want to stop and dive back into bed. But you keep thinking to yourself, If I can only make it to the shower, then I will feel better You do shower, but towel drying is hard because you cant move the towel that easy.

Morning You are up, start to get dressed. Gosh how difficult is it to put on socks. Then you try to put pants on. If you are standing, you almost fall because one leg gets stuck. If you are sitting, you get both legs on but then realize you cant get up without falling. Shoes, for now forget them. You have some coffee (or tea) and find something that will calm down your stomach.

Mid Morning On your way to work, or like many of us, cant work, but have some errands to run. You get into your car. Now that is a feat in itself. You never realized how difficult going from standing up to sitting in a car seat is. You plopped your butt on the seat and try to get your legs to swing into the car. Now you are set, heading out. Five minutes on the road and road rage erupts.... (well for me at least) Why are there other people on the road? Doesnt everyone know that when I go out in the car and have to go someplace, no one else should be on the road!

Noon You are exhausted, you hurt, you are waiting for the recent dosage of pain meds to kick in. Lunch time comes and you have no appetite, you skip it.

Afternoon Gosh, isnt the day over yet? but its only 2:00pm. You try to smile you way through the afternoon. But all the while you just wish you could be laying down, sitting in a hot pool or anything to give you some relief. The phone rings one ring, two,,,three... guess thats why there are phone machines.

Early evening Day is almost over for most, but for you its been a century. People start coming home from work, getting ready for dinner. You want to sit down, you really cant think of much except you are hurting and want to be alone. Dinner comes, if its a good day, you muster up strength and act normal for everyone.
Evening You try to watch TV, but your legs are burning, you have tingling in your toes and are just uncomfortable. Sometimes family and/or friends join in to make it a good night. You get a few "Oh you look good, are you getting better?" You do everything you can to not jump up and attack that person... Instead you mutter something or just look the other way.

Night You get ready for bed. For a second you wish things were so different. You cry a little and realize that you will have to go through the same thing tomorrow!

Chronic Pain is no FUN!
Ron DiLauro Veritas-Health Forums Manager
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com
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13

Comments

  • Instead of making me sleep better, my new meds seem to be keeping me up. They are both downers though so I don't get it. Lortab and Flexeril. Anyone else having that problem.

    I have so been wanting to stay in the bed all morning which is not normal for me.
  • Your story about a day in the life of someone with chronic pain. I truly believe that only someone who has actually experienced it could write it so clearly. It is such a frustrating problem that is very physically & emotionally draining.
    good job!
  • that my reply had little to do with your actual post. I am no hijacker. I will blame the medication. It makes me forget what the h3ll I am trying to say at times.
  • Morning: I hear yells coming from the crib... "MOMMY!!!" I start to wake up, though its a bit later in the morning than I used to. When I first open my eyes, they are dry and scratchy. My head hurts a lot. I get up, pull my son out of the crib, and head for the eye drops.

    Time to head to the dreaded kitchen, to make breakfast for little man. Gosh how difficult is it to pour cereal. I have some coffee and my stomach is too upset for much of anything to eat.

    Mid Morning: In the living room looking at the laundry I didn't fold last night. The dog slept on the couch, and snuggled into some of them, kicked the others onto the floor. Both piles will now need to be re-washed because they have dog hair on them.

    Noon: I am exhausted, I hurt, I'm praying for the recent dosage of pain meds to kick in. Lunch time comes and I have no appetite, I skip it.

    Afternoon Gosh, isnt the day over yet? but its only 2:00pm. I try to smile my way through the afternoon. But all the while I just wish I could be laying down, sitting in a hot pool or anything to give me some relief. The phone rings one ring, two,,,three... guess thats why there are phone machines. My sister hates that, and will call again, and again till I answer... she knows I'm home. Time to take little man outside for some fresh air and exercise. Its raining again, so we go to the neighbors house to play for a little while.

    Early evening: Day is almost over for most, but for me its been a century. I've spent the last few hours trying to plan dinner. I should have taken the hamburger out last night, but I don't think I can cook it anyway. I don't think I can stomach that chicken place on the corner even once more. I really need to eat something NOW, because I haven't eaten all day, my stomach is turning, and my headache is back. TV dinners again?


    Night: I get ready for bed. I spend more than a second wishing things were so different. I cry a little and dread falling asleep because I realize that right now is the best I have felt all day, and I will have to start all over again tomorrow!
  • dilaurodilauro ConnecticutPosts: 10,054
    I appreciate your comments. There is one thing about writing about what chronic pain 'should' feel like vs living what it actually does to you.
    Chronic pain can come in some many forms. For us here, its generally spinal related. But think of all the others that live in chronic pain every day. Those that suffer from COPD, Cancer and other life absorbing problems.

    Thanks again
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • They keep me up too. Not that I sleep much anyway but I know that days when I take them for breakthrough pain I can stay awake all night. Not a good way to start end?) a day!

    I'll often go back to bed after I feed the dogs just to "come down" from them.

    Griff

    (I don't think that Ron minded that you mentioned this. He's a pretty cool guy most of the time LOL)
  • never had back problems/pain, i would never have met any of you wonderful ppl. ?????
  • I so wish that the Oprah's and the Dr. Phil's of this world would read this and show "our" side of the story. I get so angry, hearing about "Soccer Moms who are Addicted to Pain Medication"!!! I know it probably wouldn't come across as "good TV", but I think more people would have a better understanding about the difference between someone who lives (or trys to live) every single day of their life with some sense of normalcy, while in constant pain, vs. some housewife who has too much to do and needs that "boost" that she gets from an obscene amount of opiates.

    I once heard Dr. Phil say that "nobody, including people with legitimate chronic pain, should be taking prescription pain medication on a daily basis". And according to his "extensive resume'", he was supposedly a counselor for pain patients. Glad I wasn't one of them!! Could you imagine being berated by this man on a regular basis???

    I saw a woman on his show one time, who had legit pain, and took only her prescribed doses of meds, and he treated her like some junkie off the streets. He sent her immediately from the show to a detox/rehab facility, all the while warning her that she better comply because he was doing her a huge favor! Sickening!!!

    Sorry, I'll get off my soapbox now. I just get my knickers in a twist when it comes to pain patient advocacy. (or the lack thereof) Your very accurate and poignant description of "a day in the life...", just brought out the activist side of me, I guess. Thanks from the bottom of my heart, for putting it into words. Maybe someday, the world will listen and understand. It's something I pray for every day.

    Hugs and gratitude to you Ron, Mitzi
  • dilaurodilauro ConnecticutPosts: 10,054
    for your post. I also agree that too many groups/organizations/etc do not really understand what chronic pain is like. We are all not a bunch of junkies trying to forget the day, instead we are just trying to get through the day the best we can.
    I am a fortunate person, I wrote that almost a year ago when I was dealing with the pain that made me a different person.
    Different ? Yes, because as much as I wanted to be like everyone else, I couldn't be
    Today, I am so much better than back then. Sure, I still have to deal with chronic pain, but it hasnt sapped me like it did before. Will there be a time in the future when this happens again? Could be, maybe, and I think it will be.
    Will I know how to handle it better? I dont know. But I will understand what it takes to get through every single day and face the next one
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • on the soapbox......i'll listen!.!.!
  • I would like to expand on your and Amanda's posts, if I may:

    Unfortunately, pain or no pain (which is rare) I have to "hit the floor running". I groggily prepare breakfast for my 3 boys (the youngest catches the bus at 6:20am, the 2 older boys leave at 7am). I am the mistress of multi-tasking - while breakfast is baking, cooking or being eaten, I do a couple loads of clothes, empty the dishwasher from the previous night, and load in the morning's dishes, and clean up the kitchen. All before 7 am. Then I get myself ready for work. Before I leave, I bring my husband his breakfast (he's got that broken leg issue, so I have to be sure he eats before I leave).

    I make my morning commute to work - which takes an hour. My workday is filled with making preparations for the many workshops, meetings and conferences my boss conducts. This includes, getting permission from our Division of Administration to hold the meetings and feed these people, securing bids for facilities to hold these activities, creating name tags, printouts/handouts needed; putting together either a breakfast or lunch menu (or both) as most of the activities take all day; being sure everyone is signed in and gets their handouts for the day. I love this job!

    In between this we are conducting usual operations with budgets, filing, copying, composing correspondence and sometimes "putting out fires", as there's always someone somewhere who is unhappy about something or other!

    THEN, I commute another hour home for my second shift. Prepare supper, assist with homework, clean the kitchen. That's if I don't have a ball game, music class, etc.

    My day finally winds down about 10 pm or later. I am so hoping to get some good rest in, but that doesn't usually happen.

    Then I get to do it all again the next morning.

    And don't even get me started on overseeing my Parents' affairs... /:)

    Your observations on just trying to get out of bed, get in/out of the car (heck most days, just to get dressed!), the burning legs, the pain so bad you just want to be left alone and lie down to relax, and, to quote: "Night You get ready for bed. For a second you wish things were so different. You cry a little and realize that you will have to go through the same thing tomorrow!" is hitting the nail on the head, let me tell you!

    It's a busy, frenetic, stressful, anxiety inducing life. But it's mine, and I'm good with that. The only thing for which I would give my left arm would be pain free days. All in all, I have a good life. I do feel blessed because I have a family, a job, a car and a roof over my head.

    For everyone who goes through the day - no matter how busy it is - I applaud you! It's not easy to do sometimes because of the pain (or - like in my case - in spite of it). =D>

    Ron, as usual, another excellent topic!

    Jeaux

    8}
  • dilaurodilauro ConnecticutPosts: 10,054
    Jeaux, I appreciate your posting your feelings about how your day goes.
    Sometimes, I find myself needing to express subject like this, because maybe just for a little while,
    I can fell like a normal person living in a abnormal world
    or
    Feeling abnormal living in a normal world.

    Whatever it is, I just do know despite all the hardships chronic pain can bring us, I cherish every single day and appreciate so much what surrounds me.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Ron what an excellent post.

    I personally feel very alone in my pain battle.

    Nothing to show the world except my contorted face.

    I am young and get pushed around at the shops - the eldery are the worst (sorry!) and so I often just quit and go home.
    My car journey, as Ron says, a feat in itself.

    I am garteful I have a happy heart and although at times, absolute despair from the 24/7 pain, I am not struggling with depression as well.

    I get really cross, NO REALLY CROSS about the ppl out there who make our struggle worse. They belittle it, rubbish it, assume it is all in our minds.

    All I know is that they have never experinced pain like I have. And I am grateful that I have survived thus far because I feel at times like th epain is just soo unreal.

    So thanks Ron, for sharing your intimate pain and suffering and for highlighting the struggle to others more fortunate not to have pain.
  • As some of you know, I was invited to speak to a group of 2nd year nursing students with regard to the impacts of chronic pain (you can read about it in Good News, if you're interested).

    The following is a compilation of quotes that I gave them as a handout; I hope they will ALL pay attention to each of these topics and have a little more compassion for chronic pain patients.

    The following quotes have been taken from PAIN: A Clinical Manual for Nursing Practice (McCaffrey 1989):-

    “The person with pain is the only authority about the existence and nature of that pain, since the sensation of pain can be felt only by the person who has it.”

    “Having an emotional reaction to pain does not mean that pain is caused by an emotional problem.”

    “Respect for the patient’s pain tolerance is crucial for adequate pain control.”

    "There is not a shred of evidence anywhere to justify using a placebo to
    diagnose malingering or psychogenic pain."

    "The health team's reaction to a patient with chronic nonmalignant pain may present an impossible dilemma for the patient.  If the patient expresses his depression, the health team may believe the pain is psychogenic or is largely an emotional problem.  If the patient tries to hide the depression by
    being cheerful, the health team may not believe that pain is a significant problem." 

    "No evidence supports fear of addiction as a reason for withholding narcotics when they are indicated for pain relief.  All studies show that regardless of doses or length of time on narcotics, the incidence of addiction is less than 1%."

    "Research shows that, unfortunately, as pain continues through the years, the patient's own internal narcotics, the endorphins, decrease and the patient perceives even greater pain from the same stimuli."



  • I wish I could have heard your presentation! That is so very informative - I would have been there saying "Amen Sister! Halleulah!"

    Itsalongwalk stated: "I get really cross, NO REALLY CROSS about the ppl out there who make our struggle worse. They belittle it, rubbish it, assume it is all in our minds," is absolutely correct! But, are you like me, and some days WISH it were in your head?

    Other than that, I just get cross. Sometimes my husband says "OOH... Somebody's grumpy and needs a nap!" Yeah, you're right!

    I too used to feel so all alone.... Then, I stumbled onto this site! Now, I feel like family!

    Jeaux
  • my day is much different.

    Early Morning - husband will wake me up to take my LA meds, and this often after I have been asleep just a few hours. Usually fall asleep around 3 am or so.

    Morning - struggle to get out my recliner, which is where I have sleeping lately. Cannot handle laying flat on my back when I am in a pain flare. As I stand up, usually hit with muscle spasms, which then triggers nerve flares. I have chronic and acute S1 nerve damage, and there is no fix. I am in the process of pursuing the SCS. I will get something to eat, and get back in my chair, and take more meds if needed.

    lunch - husband usually home for lunch, will get me something if I need it. I stay fully reclined almost all day long. I get up to go to the restroom. My "goal" for every day is to get a shower and ready by the time he gets home in the evening. I homeschool our youngest, but he is in high school and much of it is self-directed learning.

    Day in General - Not only is my nerve pain burning 24/7, but my feet and legs are very numb and I easily fall. I try not to get up if I don't really have a reason. I hurt myself frequently when I get a bright idea to go do something that comes to my mind, and then that leaves more work for hubby and sons. I have a walker and a cane for when things are really really bad.

    I try to go outside at least once a day and sit on the reclined type chair out there for some sun, some fresh air. If I decide, screw it - I'm going to town (oldest son drives), I suffer for several days, sometimes a week before I get back to "normal" which is what I am describing here.

    Late Afternoon I will get up and move slowly to get showered and make up on, dressed, etc. This takes over an hour and I have nerve flaring the entire time. Once I'm done, I have to make sure my hair is fully dry because I will be right back reclined in my chair and my hair will kink and look like a bird's nest shortly if still damp. I am usually still "recovering" from the pain of getting ready when hubby gets home.

    Evening - Hubby will try to get me to go out to eat several times a week, or just out for a drive. I never leave the house otherwise. I do not drive when I am on all these meds. Most evenings, I can't handle this. He loves to go out to eat, but I can't sit for longer than 15 minutes or so, and most restaurants it takes much longer than that. I have a pillow in the van and I keep my seat very reclined with the pillow to elevate my head so I won't get car sick.

    Hubby bed time Around 11, hubby will go to bed. I am usually up for another 5 to 6 hours. Pain meds and nerve pain keep me up, although I take Ambien. Without Ambien, I would never ever sleep.

    With this schedule, I would rate my pain as a 6 to 7 most days. My meds were just adjusted and I feel a little better. If I had to get up early, get ready, go anywhere, let alone to work, I would be in the ER. I have to stay reclined all day long.

    When I go for my mandatory psych appointment for the SCS in 2 weeks, I was told it will take 2 to 3 hours. If the doc does not have a couch or something for me to lay on, I will have to sit oddly in a chair to keep my weight off my S1 nerve, which will then (because of slouching) cause massive muscle spasms. I may end up laying on the floor. I am really hoping he has a couch or something like that.

    My back is considered "fixed and stable". My nerves are irreparably damaged. Nothing can be done. If SCS doesn't work, I will be looking at a pain pump. If I exercise, if I go to physical therapy, I get massive nerve flares. I am able to be intimate with hubby if I behave :X and that release will give me pain relief for a bit but I will be worse off the next day.

    My greatest pain beyond the true physical pain is seeing the look in my husband's eyes while he wishes there was something he could do for me. (We hired my son to be the housekeeper, and he takes care of the entire house, laundry, etc.) I am 42 years young and praying the SCS brings me some relief. I can handle the pain, but I need to be able to sit to be able to function. Sitting is required to ride in a car, go to church, etc.

    I was a high-energy mom (and even real estate agent for a few years) when all this happened. Not sure what I did, but ended up with 3 surgeries and now permanent nerve damage.

    I still have my mind, my mouth and my fingers (obviously! lol) and I can stay mentally stimulated and fight off the depressing thoughts that inevitably come when one is confined to a chair or bed.

    I'm excited for those of you who are able to drive, go to work, and get out into the world. I think that can really make a difference. I hope to be there very soon.



  • Haha Ron, I laughed at your comment about other people being on the road at the same time as you! I work full time and rarely take a lunch, so when I'm on vacation and out and about during the day, I always am amazed at just how many people are out and about too! It's MY special day and all those other people should not be there! :P

  • really good post. definately struck a chord. =D>

    i would add to the morning that sometimes I wont remember straight away how my life has changed so much in the last few years - and then I "come to" and realise and those are the worst mornings. :''(

    I would say one of the things that helped me most recently was seeing a chronic pain physio who asked me about my history and actually listened and allowed for my pain being real and significant. At one point I talked about my surgeries in the last five years and said "i know in relation to some surgeries they arent that major" and she stopped me and said "no - they ARE major". What a change from the orthos and neuros who make me feel like I am the least interesting or challenging of their patients because I "just" have nerve pain. :<



  • When I was taking it everyday it stopped helping me sleep but once I skipped a week..it knocked me right out!

    Odd.

    Angela
  • I have often thought that we (all of us on SH) would make for a very educational and informative show for the Dr. Phil show. There are so many others out there who are lost, don't know about SH, or just suffering in silence. This problem needs to be brought out into the open.
    Of course that was before I found out that he has no empathy for us! But maybe we should try and change his mind? Open his eyes? I forgot the exact figure but there are at least one million people living in chronic pain in this country alone. Pretty high figure! BTW, I was a fan of his until I read this story, now I'm dissapointed in him.
    It really burns me up when people suggest (A) it's all in our heads and (B) we're drug addicts. I would love for all of us to switch pain levels with a "normal" for one day and see if they still feel that way. They couldn't handle it!
  • Hmmmm, well, let's see. Since mine has no sense of normalcy (if you can call it that) like Dialuro's does, I can't really lay mine out as he did. I only sleep a couple of hours at a time and pretty much sleep wherever I happen to be at the moment. In the bed, on the sofa, in the recliner, sometimes even right here at the desk!
    Nothing like waking up with a Post it stuck to my cheek! After reading Dilauro's, it seems as if he doesn't always have an appetite either. Sometimes that's a little hard for me to work up to. But I do have to force at least a slice of toast down to take the edge off of the med's in me. I don't want to get sick.
    Road rage? I agree, what are those other drivers doing on the road when I am on it? Don't they know that it took me forever to get ready and now I'm late for whatever appointment I have? And the stop lights, why do they always turn red when it's my turn to go?
    Dilauro, you touched on so many things that I can identify with and a few that are a little different. But in the end, we are all still just alike, and in the same boat. Now, who feels good enough to row it?
  • You must have been peeking , thats me you are talking about, except this won where my work was concerned :(
  • Haha sounds like me except, to get up in the morning I need my desk chair to haul me up. Gone are the days with hubby whacking me in his sleep. I sleep seperate from him now but that's another story ... :$ take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    and everyone else in bad pain. I feel guilty, today was only moderate pain for me. I hope you all can have some days like that.
    Good luck Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • After I read this post, I started thinking about what all my day consists of. Since I have chronic insomnia it's hard to pinpoint an exact time that my day begins. I'll pick a spot and jump in...

    EARLY MORNING: Laying in bed listening to my husband sleep, feeling jealous that he is able to sleep while I lay there awake and hurting. I toss and turn, trying to find a position that is even a little bit comfortable. I lay on one side and my shoulder hurts, turn over and my hip hurts and the sciatica is too painful so I have to turn back over and try to handle the shoulder pain. I watch TV or get on the computer to read, trying to pass the time that my family is sleeping. Finally, the alarm goes off, waking my husband so he can get ready for work. Next I hear my daughter's alarm sounding so I know that in 45 minutes I will be alone for the day. It also means that it's time for my morning meds. I take them, and go back to bed, not that I think I'll go to sleep, but I'm just not ready to face the day. More TV and then finally, a little sleep.

    NOON: Still in bed. I think about getting up and facing the day, but have to assess my pain to see if I think I can do it. I know I want to try to get up to get some things done, but really just don't feel good enough to do it yet. Lunch is the farthest thing from my mind. Since I'm home alone, the only person I have to think about feeding is myself. Even if I wanted to eat something I couldn't. Since I felt crappy the day before, I didn't make it to the store to buy any food. Maybe I'll make it to the store today.

    EARLY AFTERNOON: Finally drag out of bed. I head to the bathroom to see how I'm looking. UGH! RUFF! I hit the shower and stand under the hot water letting it pound against my muscles, praying that it will take some of the stiffness away. My mind races around, thinking about a million things at once, but not settling on just one thing. It makes me crazy that I can't concentrate. I finish up my shower, because the hot water ran out, and head to the bedroom to dry my hair and put on my make up. I personally don't care if I get it on, but I know that it's important to my husband. If I'm all made up, I must be feeling OK! Right? Sure... After getting made up, I throw some clothes in the wash, pick a few things up, make the bed, and run the electric broom down the tile. Not a lot of things, but enough to make the house look good. Cooking dinner crosses my mind. I know I'll have to go to the store before I can cook so I have to decide if I feel like I can shop AND cook. I decide that I just don't have it in me tonight to get it done. How am I going to tell my husband. I know he'll be disappointed, but I just can't do it. The pain and fatigue are just too much. He comes home from work and I start talking as soon as he hits the door. I haven't had anyone to talk to all day long so I talk quickly or animatedly to get it all out before he gets busy doing something else. I think if I talk about ANYTHING else he won't ask 'what's for dinner'. At some point the subject of dinner comes up and I shyly explain that I don't feel up to cooking. I know he is disappointed but still he says he'll go grab us something.

    EVENING: We sit around watching TV during the evening, unless it's a sport night for my daughter. We don't talk much, just watch TV. Sitting in the livingroom is killing me, but I don't want to go to the bedroom to lay down by myself. I hold out as long as I possibly can and then give up and go lay down. My daughter has learned to do her own thing in the evening. She appreciates the evenings that I make it to her sports, but gets aggravated that I just lay around the rest of the time. I feel guilty about it because I know that these are the memories she'll have of her childhood and it makes me sad. I change in to my PJs, take my meds and hit the bed. Now running through my mind is whether I'll be able to go to sleep tonight. If I have sleep medication I can expect to fall asleep after midnight sometime, but right now I am out of it so I know it will be a long night. I settle in with my remote control and start flipping through the channels hoping that tonight will be a better TV night. My husband showers and comes to bed. He falls asleep before his head hits the pillow. Again, I'm jealous. Maybe the sleep medicine will be here tomorrow...
  • I honestly have to say that your post was brilliant. You have most genuinely conveyed the prison that life can become when one is in chronic pain. And as others have noted, you really have to be in pain to convey the experience with such simple clarity.

    It was bittersweet reading Ron. On the one hand, sure, life still goes on and we can enjoy at least knowing that our mere presence makes a difference for loved ones. Such things are not insignificant. But on the other hand, it never really does go away, this damning pain, does it Ron?

    For a time, I too was in that prison of pain. It was a dark and harrowing experience, one that nearly broke me. I'm now mostly in the light, pursuing the pots of gold at the end of the rainbows that life materializes. They always seem to elude me, but I am grateful simply to be able to give chase.

    But, at times I come back to that dark place Ron. Sometimes it is an involuntary cycle of brief pain that brings me back, reminding me of what once was and what might be again. Sometimes I revisit of my own volition, wondering just where the love of God goes when people are allowed to so suffer. And sometimes it is simply a brief communique like yours that reminds me of the bitter and the sweet that is that kind of life.

    Most of all, I ever should walk that prison of pain again, I only hope I can do it with as much dignity as you do. I think you know it already, but you showed strength and honor in what you wrote.

    Thank you.

    Cheers, Mate
  • Hi,
    I'm new to this forum.
    I can't sit or stand for longer than 15 minutes either.

    I have had MRIs, etc., and I am wondering what test showed that you had nerve damage in SI? My pain is very localized, left sacral. I had a shot of 18 hour anesthetic once and did more in that 18 hours than in 6 months!

    I just relocated (again! :''( . I don't know what doctor to see? I had seen a neurologist for a year and he just kept giving me anti-depressants.

    Is there a particular MRI or scan that shows nerve damage? I've had MRIs, but nothing showed. The doc didn't specify dye and then insurance wouldn't pay when he decided that dye would be better.

    I've been surviving on pain meds, but the tolerance is up and I need something else.

    (When my pain first started in 1997, my gyn told me it was my uterus pressing on the nerve. I lost my uterus, then a year later, my ovaries. Then they sent me to pain mgt for pills. I've been leery of surgery since, but the time has come to start.)

    Anyway, if anyone knows of any tests that show nerve damage that I might ask for, please let me know. I just got on medicare/medicaid and hoping I can finally live. I'm 48 and pain started at 38. I feel like I'm 100.

    Hugs,
    Gabriella
  • Dilauro, I cry every night too when I get in bed. Somedays ya just dont know if you can do it again tomorrow. I pray to God to give me the strength to do it. I also pray for all my friends here at SH.
  • Ron,

    That was truly the best thing I read today!


    Thanks! >:D<
    Michelle
  • i have not read it before .Ron its a very realistic account of what many of us go through every day .i prise even envy those that can work as this is something i wish i could still do {i was an electrical engineer} any you need to be fit for that.i read many of the posts on this topic and i can identify with many of them ..the GOOD thing about a site like this and a post like this is ..THE AM I NORMAL SYNDROME?? when i can read that other are having problems sleeping and others are tired mid morning and don't want to do stuff due to meds and pain ...i don't feel so abnormal ...does that make any sense? its no use comparing oneself to a healthy person because that's not you any more .i see my wife at weekend trying to find stuff to do around the house {so she can stay in with me} and i know that we at 44/47 should be in the prime of our life now .and going on holidays and walking in the beautiful lake district etc..but constant pain has robbed us BOTH of such nice things ..i never thought that i would turn out to be the person that i am now .very much like BOBs how did i get here post that's had over 5000 hits .i sometime talk to bob on skype and he has been through hell ..a very brave man ,,{bob in the forest}.its true pain changes everything
    t
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
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