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Things we give up due to chronic pain

j.howiejj.howie Brentwood, Ca., USAPosts: 1,794
edited 06/11/2012 - 9:02 AM in Chronic Pain
What are some of the things you love, but have had to give up due to chronic pain?
For me.....It would be traveling. I love to go places. Especially places that I haven't been to.
I saved for it. I planed for it, And now I just can't do it.
I went to the South Pacific coast. For five days. Had a pain spike on the first day. And spent the next four days in my hotel room. In major pain and unable to do anything but lay on the bed. How are you going to plan?
Very expensive, and what a waste of money!
That's just one of many!....What are yours???
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!
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  • For me, it is volunteering with the crew for the Susan G. Komen 3 Day walk for breast cancer.

    My back issues are incompatible with the amount of time required to stand and walk in volunteer duties. They are also incompatible with sleeping on the ground in a tent or on a cot.

    For me, this is a heartbreaker. My mother is a 2-time survivor of breast cancer. Volunteering for several consecutive years was my way to avenge what happened to her.
  • I have to say the only thing I have given up is rollercoaster rides as they could be very dangerous with my neck:(....

    But everything else I do...no matter if I suffer with some pain...

    I spoke with my PM after my last fusion surgery in that if I am going to have chronic pain....I need to know what could actually injure me further....and what would just cause extra pain...

    I love traveling and do Mission work around the U.S. and Africa....The trip to Africa is 13 hours by 3 planes, a helicopter, and a 12 hour bus ride on dirt roads to get to the remote villages....

    But oh....when we pull up and the children and adults come running, smiling, singing...and I get mobbed like a rock star with hugs and kisses....I could not care less that I am so much pain I can barely stand!!!...It is worth it...

    I also love to ride motorcycles....(on the back as I don't have my own)....and thankfully my ex boyfriend who I am great friends with....we will go on day rides...Again....I just take my pain meds and know that I will have some awful days afterwards but I just can't give up the things that give me joy...

    Pain is going to be there no matter what....

    Jim....isn't there some way to find ways to travel in smaller amounts....or at least for a few days here/there???

    Julie....how about sitting in a chair to help volunteer....or even for just a few hours? Or being able to show up midnight for a bit to cheer on your group of folks? There must be some things you can still do to help out there instead of give it all up:(

    I know it's hard....belive me....we all live with such terrible pain....But I guess I just think that there are some things that I just cannot and will not give up....the Joy always outweighs the pain.....
  • Three fusions and now SI joint dysfunction from the block of bone sitting on my SI joint.

    I had to give up running, which I have done (competitively)since 2nd grade when I beat all the boys in the 40 yard dash!! I loved to run, it was my thinking time.

    I also had to give up my bikes. I had 12 at one time. I always commuted to work on my bike so had several commute bikes for summer and winter. Plus road bike and time trial bike, mtn. bike, single speed, etc etc. I loved to ride too.

    With the SI I cannot even walk long distances. I have never liked walking but it became more acceptable when it was all I could do after my surgeries.

    Can't sit or drive long distances so this prevents me from going places sometimes.

    I CAN still swim and that is also something I have done competitively since childhood. I even managed to get up on the starting blocks recently. Haven't competed since my fusions but am planning to get back into it soon.

    I would like to say I gave up cleaning my house because it hurts my back but alas that is not the case!!

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,794
    You mentioned my second love. My Harley Road King. She was my baby. I Bought it new. Then Poured thousands and blood sweat and tears. In chrome, motor work, and many, many things to make it so special to me. But I just couldn't ride anymore after 10 years and 8 surgeries.
    So I gave it to my son. And now it's very special to him.
    And every time I see him riding, working,polishing, etc. his smile and the gleam in his eyes.....Well It's way worth it....The pride he takes, Just because it was Dads!
    And the eight surgeries and 10 years. Should explain not being able to travel. Believe me when I say the Joy would outweigh the pain. The way it used to be!
    But as time goes on,there are different degrees of pain. Please....enjoy every bit of it you can. While you can!
    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!
  • I'm sure it was killer to have to give up the bike!! Can he take you on rides?? I know I would never be able to ride one myself anymore...(had a 883 Sportster way back when)....so that is why I hitch rides when I can now...LOL..

    Sorry to hear that the pain outweighs the joy of doing any traveling...I hear ya with the surgeries...Have had 12 in the last 10 years with a lovely little brain tumor to boot right now..

    We all have to make the choices we think our best for ourselves and hopefully we have Drs. who help us acheive our goals...

    I'm glad your bike went to a good home!!

  • I am the odd ball I guess ;)

    1. cleaning my own home

    2. doing my own laundry

    3 Basic things - making a bed , not taking 20 minutes to put clothes on, 15 for shoes etc. :(
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I miss keeping my house clean and not having laundry always waiting on the floor to be done (MsHD, you're not alone).

    I miss the energy I used to have. I get home from work and no longer have the energy to make a nice dinner and do other things too.

    I miss long car rides and the spontanaety (sp?) of being able to just get up and go. Now there's too much prep - making sure I have my brace, pills, etc.

    I miss golf the most. I can sometimes make it to 9 holes, but usually only 7. Never again will I make 18 holes - I tried on a good day and was playing well but by the 13th hole, I fell after my drive and my hubby and friends made me stop.

    What have I gained? Walking. I walk every day now with my little Corgi, Wally, and have made many friends at the park. That and the friends I cherish.

    I also love my recliner.

    Cath
  • Well, I don't use my own darkroom any more because of all the constant bending involved. I did change to digital, but haven't mastered Photoshop yet, so I'm struggling with that.

    Instead of bending down to get a really low angle shot, I just lean forwards and drop my hand to take pictures at a lower level - the images I get are rubbish though, but I suppose it's trial and error.

    I don't do anywhere near as much gardening as I used to enjoy. I used to be able to spend the whole day outside, but now it's more a case of 10-20 minutes, then I have to stop because I'm bent over double and in agony.

    I know I should pace myself, but I also need to be able to TRY!

    I won't give up until it totally gives me up first. I will at least try and, if I end up paying for it with too much pain afterwards, then I won't do it with quite so much gusto again.

    At the moment, my biggest 'try' is returning to work. I'll know soon enough if I can do my job or not, but for the first 10 weeks I won't be required to do home visits or sit/kneel/work on the floor - so hopefully things will be ok in the end, please G-d!

    All in all, I can do most things if I'm very careful, protective of my back and don't overdo it (having said that, there have been occasions when I've forgotten about my back - how? - and have just dived in, almost an automatic reflex thing, and severely regretted it afterwards - I don't suppose I'll ever change). If there are things I can't do then my hubby and family will help me if I ask, so it's all good.

    I look at it this way...... I'm gonna be in pain whether I sit here doing nothing, or try and do something worthwhile, so I may as well give it a go and see what happens.
    SUE
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • after being a very active person .back pain has gradually reduced me to a house bound wreck .even before this operation i could..[on a good day]} walk the dog /swim clean the car.but now its all i can do to get a shower and rest for the day !.life has changed dramatically over the last few years .sex /work and even dull stuff life food shopping ...cart do anymore ...at 45 ..its a crap outlook
    tony
    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
  • I agree with you about the energy. How could I have missed putting that one in. Its huge!!

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,794
    Tony, the light ain't out at the end of the tunnel for you and I....yet!
    We are still on the mend from our recent surgeries. And it's so slow for us, that we can't throw the towel in just yet! I've got a month on you so I can tell you that in this last month, I actually have had some progress.....very little, very slow! But that's better than nothing!
    Maybe we can get a small amount back, in a year or two.
    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!
  • dilaurodilauro ConnecticutPosts: 9,742
    A career as a professional basketball player. Before my surgeries, I was 6'10", now I am 5'9"

    A 3rd baseman to play next to Derek Jeter. I hit over 790 homeruns during my wiffle ball career.

    Jim, I am sorry, I am not trying to poke fun of your thread. It really is something people need to think about.

    Over the years in dealing with chronic pain and especially the years I have been here at Spine-Health.
    The more time passes, the "What did I give up" seems to get smaller and smaller.

    For people new to spinal problems and chronic pain, the future can look pretty dim and bleak.

    And for those of us that were super active. Jim, you and the mountains, Marion(Mouse) and her horses just to name a few get hit with a massive roadblock.

    Brakes fully pressed and now you guys had to adjust

    Its never easy. I know you have all heard me say this a thousand times and I will probably say it another thousand times.... Its not what I miss and dont have any more, its more about all what I can do NOW.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I was one of those super-active people Ron describes. When I first hurt myself in my mid-twenties, I was extremely active. I was involved in martial arts, and preparing to start a career as a conference interpreter. All that's over now.

    If there's one thing I've learned in the twenty-plus years since my chronic pain began, it's that you have to focus on the now, not the past. Concentrate on and enjoy the good things in life, no matter how small, and don't waste time lamenting what you used to be able to do - that way lies constant regret and bitterness. As bad as chronic spine pain is, we are still fortunate compared to many people. My younger brother has been battling cancer for the past year and his positivity and determination puts the vast majority of chronic pain patients I've come across to shame. Celebrate life while you have the chance!
  • I just got done erasing an essay of several hundred words. I came to the conclusion that it would be easier to list what I can still do.

    1.Lay in bed
    2.lay in recliner.
    3.type on computer.(for about 10 minutes)
    4.Right now life kind of sucks for me, but I still have hope, it's there behind all the depression and tears, but it is there!!Someday I'll figure it all out.
    Gary
  • dilaurodilauro ConnecticutPosts: 9,742
    Your post was one of the more uplifting and valuable one for everyone to read and re-read.
    Your view is really the best way to enjoy the rest of your life and forget about what was. Make the most of what is and move on.

    Thanks for posting it.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Hmmm..what have I lost...

    I lost a career in pediatrics, that I absolutely loves...but I GAINED a career as a telephone triage nurse that I love just as much.

    I lost the ability to run around and play with my kids the way I want to...but I GAINED the ability to enjoy sitting outside with them on my comfy chair, watching them play and have fun, which warms my heart.

    Honestly, despite the pain and fatigue, I can honestly say I have not had to give up too much. I still push myself to at least try to do the things that I love to do and that bring joy to my life. And I am remaining hopeful that the treatment for my AS will help to give me back the few things that I have lost.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,794
    I see that other than some being far better writers than others. Some struggling to make them selves understood.
    It still boils down to the different degrees of pain. And the different amount of drugs a person has to take to be that person.Sometimes the pain is so much at the for front of a persons brain, there just Isn't room for anything else. So you take more drugs. And then it's likely you can't do it anyway...Because your brain is too fogged. Or maybe your so paranoid that it's just to noticeable.... or maybe it's something else.
    BOTTOM LINE....There are different degrees of pain!
    And I for one will not put you down for that!!!
    ....
    This was not the intention of my thread....But someone steered it in that direction!

    Not one person commenting on this thread should feel like less of a person!!!
    Some may puff their chest out and feel a little superior. But....That's cool too!!!
    Jim :D
    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!
  • Thank you, Ron. I'm with you 100% on this - it's so important to concentrate on getting the most out of life now, rather than feeling cheated of those things we were once able to do before chronic spine pain arrived and changed things. I'm not saying it's easy, because I know first-hand just how tough it is, having been through all the usual ups and downs, the trials and frustrations over the years myself - but we have to try to find a way to come to terms with it and enjoy what we have in life. It can all be taken from us in an instant, without warning.

    The time I've spent recently among people in the leukemia ward really does put things into stark perspective. It doesn't change the fact that I have chronic pain, of course; but witnessing the courage of others going through such ordeals makes me even more determined to make the most of my life, despite my daily struggle with pain and the limitations it brings.
  • That I wish I had never posted to this thread. It just ended up making me feel worse. I understand those that have had to deal with cancer in some way or form, they have seen much worse than we are dealing with,and we come across as just whining. I may be whining, but that's kind of what this site is about, support for those in chronic pain from back and spine. Perhaps, in time I will reach the point where pain does not rule my life, but at this point I'm just not there yet. When I get to that point, I'll try to be as upbeat as some are. To them I say, thank you! We need to see that light at the end of the tunnel is out there, and we just have to keep looking.
    Gary
  • Hi Gary, I'm sorry if it was my post that made you feel that way. I wasn't trying to put a downer on the thread or make anybody feel that their pain is somehow less important or serious by bringing up all the people worse off than us. I was just trying to explain how it has made me realize that it's important to appreciate life as much as possible, despite the constant pain. It's still there, regardless of what I do or think, so I just try to be positive about it and put it in perspective. I'm definitely not saying it's easy. I had to give up a lot of things I love because of my spine trouble and the pain that comes with it, including two careers. I'm learning to try to take each day as it comes, and get the most out of everything I possibly can, no matter how simple or small. It's tough, but it beats the alternative hands-down.

    I'm not immune to 'whining' myself, either - it's been over two decades for me and I guess I still haven't accepted it fully, the fact that I'm going to be hurting probably forever, and all the limitations it brings with it. Again, it wasn't my intention to make anyone feel worse (the opposite, actually!) so I'm sorry if I did. Sorry to Jim too, if I unintentionally changed the vibe of his thread. I was just trying to add my own perspective as a long-term pain patient.
  • My point may have been that I sound whiney, but my main point is that we need upbeat people on spine health to set an example, to show that there is a Light at the end of the Tunnel, some times I don't want to hear your point, but we need it. I don't think I've been a chronic pain patient long enough to figure out just how to deal with it yet, or maybe I have been a cp person long enough, I just haven't gotten past that dark bitter place yet, and I'm more than a little bit envious of those who have.

    At any rate, please keep being upbeat as much as you can, we all need to hear that side so help dig us out of our cp holes.
    Gary
  • Things we give up. Well, you mentioned travel, Jim. I've been doing quite a bit of that as of late, the past couple of months. It's been hard, taken it's toll. But it was well worth it! First was Florida to visit my parents while they were down doing their snowbird thing, lol. Then off to Belgium to visit some friends, and went to Italy and Spain as well. On my return from EU, a couple of days later, my "special someone" came home on leave from Afghanistan for a week, so it was up to see him. I basically haven't stopped for 2 months, and am exhausted. All I keep thinking is a few years ago, this wouldn't be an issue. I had a lot of days where I couldn't move or do anything in between, but that was okay, it was all well worth it. It's the moments in between that we do it for. What do I miss? The energy to do it. Chronic pain really takes it out of you, doesn't it? But if we don't try, life just passes us by, and there's no fun in that! I wouldn't trade the past couple of months for anything, even with all the bad days...
    Kelly
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    I understand what your thread is about. I also can agree with everyone who posted...depends on what day it is. One day I'm all for pushing yourself as far as you can and then deal with it. Then on the "dealing with it days" I'm all for say to heck with it all and give up. Depends on my mood and my pain at the moment.

    I've always been a person who will not say "I can't". No matter what it is, I may not do it well, or even correct for that matter but I will always try. I've always considered this a good trait...still do, some days, not today. I've learned a lot from chronic/acute pain but then again I've learned nothing. Today I'll think I've learned my lesson and will not do this to myself again, then as soon as I'm able...or barely able, I'm doing it again.

    I guess it's like the other day I saw a commercial for some arthritis drug and heard the side effects were types of cancer and I thought "who in their right mind would take that knowing it can cause cancer?" Then I went out and lit up a cigarette...hmmm...who in their right mind would do that?? Go figure?

    Anyway, I'm rambling. Jim, I hope you're improving daily. Send me an email and catch me up on progress ok?

    Debbie
  • no matter what is causing it . many of us here take the same pain killers as cancer patients and many of us here will be on them until we are no more .so whats the difference .from what i can see the cancer patients {and i have known many in my family } know that they will die with in a certain time frame .we on the other hand go on suffering and not knowing when ...yes i am pissed off{}but not suicidal]our family has already lost too many members to that club {two if you were wondering]
    tony
    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
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,794
    Now that's what I'm talkin about!!!
    I wanted it so bad.
    O'h well, I'll find something else to do. But boy do I envy you girl! I hope you had enough fun for me and you!
    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!
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,794
    So.... let's just agree to disagree. On just a couple of items. And on the rest.....Let's agree to agree.
    Jim :D
    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!
  • I knew right from reading the topic that Ron would jump in with his wisdom. I think it's the greatest thing I've learned recently, and definitely the best advice I've received: focus on what you CAN do.

    About 6 months ago, I was hovering around 250, very inactive, just working then going home to sit. The constant pain was getting worse and my outlook was dimming with it. I was starting to feel depressed, so I hobbled in to action.

    First, I cheated a little and had a doctor put me on a weight loss pill. About 5 months later, I'm down to 205, eating healthier, off the weight loss pills and still losing. I have tons more energy, the pain is diminished and I just bought a bicycle (I used to ride a LOT, century (100 mile) rides, tours across the state, etc). I'm a success story being written still. The ending is up to me.

    I know I don't have nearly the severity of roadblocks that a lot of people here have. I haven't had surgery or hardware put in. I mostly have chronic pain from facet joint arthritis and a few herniated discs that are healing. I don't think that changes the message I learned and others hopefully learn. Focus on what you CAN do. You'll find yourself saying "if I can do that.. maybe I can do this too", and before you know it you'll be doing all those things you thought you couldn't.
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    I don't see any of this thread as a competition. Just as different views and opinions on dealing with what we can/can't do and how to do it. No competition. Everyone is different just like we all tolerate pain different.

    Like Jim said too, being on a lot of meds has to make a difference in your ability to function normally. I know if I took the meds a lot of people on here take I probably wouldn't be able to get out of bed much less motivate myself to do anything!

    Good topic Jim. I like to read how different folks manage to make it through. We all have to do it however we can after all. Keep on keeping on...

    Debbie
  • I have to disagree in that it's about different degrees of pain..Or how much medicine someone is taking....None of us can compare our pain to one another....I don't have "less" or "more" pain than you...

    It's about what stage we are all in or as someone else mentioned....what day it is...

    We all have good days and bad ones emotionally...

    So...when this question was posed by you....You have some people answering with what they still can do....and others answering on what they have had to give up...

    Neither answer is right or wrong...And it's sad when people start to get so defensive and angry when others don't happen to share the same view at the moment....

    Aren't we all afforded the same grace with our thoughts/opinions?

    I don't think anyone is looking down upon those who are having a rough time right now with their chronic pain and need to vent about all the things that "pain" has taken from them...

    Just like I don't think anyone should get so upset about those of us are in a place....at the moment....where I like to focus on the positive....

    I've had....and still have occasionally....my days of crying....of being angry.....of asking "why me".....of being sad about the way things have been going and having to live with chronic pain...

    I don't think a single person on here hasn't had those times.....

    But then we pick ourselves up...dust ourselves off.....and the only way for myself....to go on each day is to focus on the good in my life....To see what good I can do for others because of my chronic pain...

    It's helped me be a more empathetic person....It's helped me really be appreciative of my friends and family....And as I wrote earlier....to still do pretty much everything I used to do....but in smaller doses.....To enjoy every single moment of life...

    It's sad that this turned into a thread with it sounding like a competition ....

    We ALL have chronic pain.....so we should all be able to share our thoughts....even if we are on a different part of our journey with that chronic pain...



  • I don't think I chose the right word with competition.....I just meant that I was sad to see where some people were feeling bad about their posts....and that we should all come together and support one another....even if we are feeling differently a specific day or time in our journey...

    I'm not the best at the written word...LOL....So wanted to say this here instead of take out the word in my post as then it wouldn't make sense with Sunny's post..

    Group hug (( )) :):)
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