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Physical and Emotional Pain

dilaurodilauro ConnecticutPosts: 13,526
I've touch on this subject several times over the year, but I still feel it is so important to discuss.

I dont think I need to elaborate on the physical pain that spinal patients need to cope with. We all have our various set of treatments that hopefully make every day a little easier to get by.

But our emotional pain. Realizing
  • - We cant do the things we did before- Its hard to socialize when all of our friends do not have any medical condition- What is in store down the road.- Will I have to deal with this pain forever- I have young children and I cant play with them- Will I be able to have children down the road- I might lose my job if I stay out of work any longer- etc
That list goes on and on and its impossible to list them all I am sure each of us have more specific items that we need to deal with.

BUT what about our loved ones, spouses, significant others, family members, etc They may not understand the physical pain we are in, but they see the end results. They see the mood swings, they see the crying, they see all the pain medications we take, they see we cant do everything what we want to do. They see all of that, but do they really understand it?

They may look at the situation as if they are being robbed. Lets say , they love to horseback ride, ride a motorcycle, or play golf. We can't, so in ways they are being deprived of what they like to do.. But they do not have any pain
medications to help with that. Many times they have to suffer in silence, but eventually that silence unravels itself and becomes aroar.

How can we avoid all of this? Its difficult, in fact very difficult. We need to have effective communications with those we love. And even then, there will be times when that breaks down.

We expect the understanding of our loved ones to help us with our pain and medical situation. But lets also look
at the impacts all of this has on our loved ones. They suffer also, not the physical pain we have, but their emotional pain may in fact be even more difficult than ours.

Communicate
Ron DiLauro Veritas-Health Forums Manager
I am not a medical professional. I comment on personal experiences 
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13

Comments

  • HorseLoverHHorseLover Posts: 5
    edited 06/24/2014 - 3:28 PM
    I am 77 days away from Fusion L4-L5. I am in a much diminished capacity of my life due to pain and pain avoidance strategy. This has consumed most of my life. I used to be one of the most active, strong and positive women among everyone I met. I've ignored the pain and hid it from most people for the past two years. Now, I'm nearly incapacitated and have severly cut back on all physical activiity. I am a craft artist with a large audience, who have begun to ask where are my new designs. My active horse life has stopped and those creatures are mystified. My family is stunned by my diminished capacity. I have always had a hard time asking for help or delegating responsibilities. I look forward to the other side of this surgery and renew my active productive life. I am scared about this drastic event to correct my problem. I feel I need to forgive myself for the lost time for recovery, predicted to be a year, possibly earlier. I have started to train myself to look forward to the positive outcome. Yet I have dark moments when I want to shed things, for example, sell horses and simply cut off my long bushy hair, two things that are important to me. This looks to be a long journey. Its not like when I compression fractured my T10,11,12 and recovered in a brace after six weeks. I learned some emotional coping strategies when I went through that 14 years ago. I will try to use those again. Visualization worked well, probably because I am an artist. I hope that when I get on the other side this battle, I will dance on my 60th birthday!
  • I know exactly how you feel. It's great that you have hope & you're holding onto that. I cut my hair! Finally I have someone who understands the magnitude of that! It was bushy, red & down to my bum when wet. It's still long, normal person long but it was a huge loss for me. I know it sounds silly. I'll never do that again. As you know, chronic pain steals too much.
    Do you blog & YouTube with your art? I've started Art Journaling, just playing but I can do it anywhere in any position & it helps. Helps me to forget what I can't do, helps me to focus on what I can. Craft art is changing. If you're not part of the online world I highly recommend it.

    I've had some monumental changes in my life. Moving from England, leaving my career to be a stay at home Mum, chronic pain.. I don't know if it's easier for me because I'm used to leaving things behind. Don't get me wrong, I have some incredibly dark times. I still wake Groundhog Day to my pain & want to die but I don't. Life goes on & to be honest it's pretty good! I think I got bored of being completely broken. Depression, anger, frustration lasted too long for me. I forget that sometimes & the darkness returns but it doesn't persist like it used to. I've wasted so much time being miserable. This is my life, for better or worse.
    Osteoarthritis & DDD.
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  • Sorry. I got a little distracted & rambled off there! Welcome HorseLover! ;-)
    I'm so glad we've got another artist here. You sound so positive, for a spiney...isn't it funny how we redefine what 'happy' & 'positive' is once we've been living with chronic pain for a number of years? I'm a human being not a game show host, it's not possible to be perky all the time but I refuse to let chronic pain win. It did for a while in my past & I simply refuse to go back there.
    I've found meditation & visualization very helpful too. I like heating & massaging airomatherapy oils at the same time to bombard my senses. I strongly believe that filling my mind with something, anything other than my pain is the key to living with it. I'm also interested in the research that shows that chronic pain decreases gray matter in the brain & meditation, developing new skills increases it...can't hurt??

    Good luck with preparing for your surgery. There's lots of great information here. Check out the surgery forums if you haven't already. You'll find lots of support there. I look forward to seeing you around & chatting. Welcome ;-)
    Osteoarthritis & DDD.
  • dilaurodilauro ConnecticutPosts: 13,526
    that when you start to divert some of your daily and hourly actions to something other than the pain, you start to find ways in making positive strides.

    Take quicksand.

    When a person wallows in their pain, they start to sink into it and when they struggle, they sink lower and lower.

    Where as the person in that same quicksand, takes a different approach. They maintain a level and positive outlook looking for ways out. More than likely get themselves out.

    Sounds simple, but in many ways it is. Its all how you approach things.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • I was first diagnosed with arthritis when I was very young but it had very little impact on my life. My Mum had a 'slipped disc', as they called it back in the 70's, when I was a preschooler & still suffers with arthritis. My Dad is the highest functioning chronic pain sufferer I've even known! He has suffered terribly over the years, it has slowed him, it's even brought his life to a grinding halt at times but he's always bounced back. He's an incredibly obsessive man...about everything EXCEPT his pain.

    I've always been considered a very strong, level headed & smart lady. Put all of these facts together & chronic pain should be a breeze for me. Why isn't it? ...because its so incredibly, unrelentingly bloody hard for everyone!!

    At the start I was in denial. Just look at my genetics. I take after my Dad in so many ways, I was diagnosed young, it should of been obvious that my chronic pain journey was starting for real when I fell (dead leg, sciatica etc) but like everyone, I convinced myself that it was temporary. I just needed to be cured. I think we all have to go through that stage. When do we accept that this is our new life?

    This seems to be where the anger, frustration & depression starts. Why can't our doctors stop this pain? There's the hope...therapy, procedures, surgeries, medications. For some this is the end & life continues as before. Why aren't I one of those people? Maybe the next treatment will make it stop. Am I seeing the wrong doctor? Maybe I need a 'better' specialist.
    Now the anger & frustration hits for real.. It's my doctors fault! Why isn't he doing the right things? Why won't he give me MORE narcotics? The ones I take relieve some of the pain so if he would only give me more, more & even MORE I could be pain free. It's his fault I'm in so much pain! He doesn't understand, he's not compassionate, how can he expect me to live like this??
    My husband doesn't understand. He just doesn't get it! He goes to work all day & I'm left hobbling around trying to keep the house tidy, looking after the kids. He wouldn't leave stuff on the floor if he cared. Where are my family & friends? Why are they carrying on with their lives while I'm suffering like this? I'm in agony all the time, everything makes me hurt more so I can't do anything at all. My life is over & no one cares! Yep... Now it's time for the major pity party!

    I think all of this is perfectly normal & natural. It's the start of the chronic pain journey. That's the most important lesson I've learned so far...it's the START. Just the beginning. The longer you linger on the starting line the worse it is. Maybe you're a lucky one & this isn't permanent. It takes a while to really figure it out but if chronic pain is going to be part of the rest of your life you need to get in the race! What do you want your life to be?

    I just don't want my obituary to read, "She did all this stuff then chronic pain hit in her 30's & she spent the rest of her life in bed or hobbling around crying. She spent the last 40-50 years a shadow of a person who never did anything because it hurt. Isn't it tragic?"

    I'm not saying I know the answer. This life is so bloody hard sometimes but it's my life & I have to keep figuring out how to make the most of it...
    Osteoarthritis & DDD.
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  • dilaurodilauro ConnecticutPosts: 13,526
    Get into the race, dont be a bystander and let it control you.

    This way, when you take a proactive role, you chances are always going to be much higher if you just sat by.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • PinkellaPPinkella Posts: 211
    edited 06/26/2014 - 12:34 PM
    I do feel my back is taking over me....I've been fighting it every step of the way to remain the person I've always been....
    Who am I kidding...?
    As each flare happens with my back,the conditions seems to go up another level.....I don't have the power to stop this...
    I don't feel in control of my body no more....I just can't get the pain under control enough to be able to return to work and have a proper social life.....
    What is the point in fighting it? As I can't beat the arthritis in my spine can I ? I can't improve the pain either as believe me I've tried!I remained positive for a Long time in hope something would help,I was no way deluded into thinking it could be cured though,but the chance of improvement in the pain? If one of the treatments was to work!was an amazing though a the time .
    Now I've exhausted all treatments and they haven't helped,or only helped short term, I've last the will to carry on in the race..
    Yes there's surgery (last resort) but when I hear the awful risks involve I no I can't take those sort of risks,if they happened it would finish me of..
    Unfortunately as much as I hate to say it,my back s now ruling me....and destroying what quality of life I did have...fighting it like I have has been a waste of physical and emotional energy....
    Facet joint Arthritis L3,L4,L5,DDD.
  • I was always into shoes & boots, the higher the heels the better...probably part of the trouble I find myself in today. I got sick of looking at my collection a couple of years ago & gave most of them to my Mum. I kept my very favorites though.

    Today my daughter was playing dress-up & stomping around in my favorite boots. It made me a little sad that I can never wear them again but she looked so cute I got over that fast. The last time I remember wearing them was about 9 years ago. I was in New York at the time. Days wandering around galleries, early evening in comedy clubs or watching a show, then off to a bar to warm up for a night in the clubs dancing. Boy were my feet happy to be set free by the time I collapsed into bed!

    That part of my life ended when I had kids & moved on. I had to reinvent myself as a Mum. Things change. Life changes. I know it's not as simple as that but we have to adapt. It broke my heart when I gave my shoes away (I'm honestly not that shallow. It's symbolic) my spine has stolen more from me than I ever imagined it could. I know I'm lucky that I had so many amazing experiences before chronic pain changed my life forever. I know I'd find it harder if I'd never had a great career, travelled, partied, had a family etc. but I know others who say its harder because they've lost so much that they once cherished..

    When I was in a really dark place I nearly threw out all of my art supplies. These's no way I could stand at an easel, I hadn't painted for a couple of years. I didn't. I found a way to change what I do so I could continue even when I can't stand (which is most of the time now). My kids begged to go swimming today... We made a 'splash park' for their toys on the kitchen table, collected bugs & made cupcakes. Yes, it sucks that I couldn't do what they wanted to (that hurts more than my back) but they won't remember today as another day that they couldn't have fun because Mummy's always in pain.

    I get depressed, of course I do I'm in constant bloody pain! I could spend everyday wishing things were different & it wouldn't change a thing. All I know is my life's better when I think about what I CAN do, my pain does dictate what I can't do but it doesn't rule me most days...I've taken that power away from it. I have fought it & I needed to go through that so it wasn't really a waste of energy. I needed to know that I'd tried everything...to be honest I'm contemplating trying a few things again.

    Helen, do you have reasonable pain management? I ask because I find everything so much harder when I don't. On a good day I get 40-50% reduction with my 'blend' which includes medications. Less than that & I spend half the day hobbling around in tears. That's when I write my really depressing posts...

    Osteoarthritis & DDD.
  • PinkellaPPinkella Posts: 211
    edited 06/27/2014 - 1:11 AM
    English girl,yes I have pain meds,but unfortunately when I have a big flare in the condition I literally cannot move without screaming!i am literally bed bound on my back,slightest movement sends me in a sweat with the excruciating pain...
    Believe me if I could get out of bed at the moment I would! I have tried and ended up vomiting with the pain....
    My back flares seem to be happening more often and that is a scary though that my bed may well become my life 6months out the year or even more....but then do you go for surgery ?and take those high risks?because we all know spinal surgery is not low risk......?i refuse to put my head in the clouds and ignore the risks....because if I did end up paralysed or incontinent from the op I have to think how that would effect my children and family...for me I know I would be finished mentally if the op went wrong...
    I have tried every treatments I'm aware of...I'm exhausted if I'm honest....
    My facet joints are literally rubbing bone on bone.....nothing can change that only surgery so I think I just need to shut up and put up...
    Facet joint Arthritis L3,L4,L5,DDD.
  • So sorry your pain is so bad, I know to well that pain, and it really brings you to your knees. I have not got arthritis, but my disc on the L5s1 was bad, and the nerve pain was terrible 2013 was the worst year of my life. I opted for surgery, My Discs
    Were So squashed, And I Couldn't Understand How All The Lotions Potions Needles, Accupunture Could Help Me. I tried everything like you, so I opted for surgery, Im 5 months out now, My Recovery Has not been easy in fact I thought I would never turn the corner but I have and I am so much better for having the surgery ..it is such a hard decision to opt for surgery
    I am glad I did, as last year I was a mess. So helen I hope your days get better and you can get back to your old self.but I agree it takes over your life, it becomes your life...........

    Hugs

    Jen
    Tlif L5S1 fusion on the 14th Jan 2014
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