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Day to Day

Pain_is_mePPain_is_me Posts: 69
edited 06/11/2012 - 8:50 AM in Chronic Pain
Its just been 6 1/2 months for me with this constant pain (was sporadic before) and I don't know if I will ever get used to this new life I have to live. Its the day to day stuff that really bothers me. I can't stand up long enough to cook dinner or wash dishes, can't sit to watch a movie with SO and the kids, can't go out for a walk on a nice day... these things are so basic and yet it hurts so much even on pain meds. Last night I did sit for an hour painting with SO's 9 yr old daughter; had to lie down for an hour after that. Then we had plans to go out to eat after kids went to bed. Spent about 1.5 hrs in restaurant, got home and I was in so much pain I couldn't sleep. My back of course was killing me but also pains shooting down my legs and my feet, hips killing me. Took my meds and sprayed my back with pain spray (menthol). The spray felt like it was burning through my back and just added another log to the fire as it didn't help but hurt. It normally helps a bit.

I don't know how to handle this most days. I feel useless. I can't imagine living all my life like this. Just keeping my job is a challenge. I have been working at home pretty much since July 4, 2010 when this happened. Ideally they want me in the office but they understand. Right now I am safe until April when I see the specialist. Then work will expect some kind of action plan to get back into the office or go on disability. I haven't been able to sit up for more than 20 min. with reasonable comfort in months... I sit longer but it causes terrible pain and I pay for it some times for days after. My whole life is turned upside down, I can't do the things I enjoy, can't even spend time with people in a 'normal' manner. We were playing cards with the neighbors a couple nights ago and I had to leave in the middle of a game because I just couldn't handle the pain any longer. I was almost in tears not just from the pain but from the situation and thinking how this stupid pain has placed such strict limits on what I can do - I hate it so much!

How do you deal with this emotionally? How do you change your mindset so the pain doesn't control you - even though it does control so much of your life? I don't know how to cope with this.



  • dilaurodilauro ConnecticutPosts: 9,839
    Pain can always be defined into two major categories:

    Acute That quick onslaught of pain. For example having your finger smashed by a hammer. It hurts so much, but you know in a short period of time, that pain will go away.

    Chronic Pain that persists. Some definitions say it should be over 6 months, some say 9 months.

    I think everyone has what it takes to deal with acute pain. Dealing with chronic pain entails so much more:

    1 - Physical draining
    2 - Emotions running wild
    3 - Support from loved ones
    4 - Job Loss or reduction
    5 - Financial impacts
    6 - Long term outlook

    These are just some of the things that people living in chronic pain have had to face. There are many more and I am sure each of them have much more details.

    I believe the first thing you need to do in terms of dealing with chronic pain, is to Accept it. You have this on going pain. Accepting it , does not mean you have to let it rule your life.

    A chronic pain patient job is ongoing. You need to do all sorts of research to see what others are doing to combat this. You want to understand the various treatments, conservative and more aggressive that can help deal with the pain.

    Above all, you need to keep a positive outlook on this. No matter how dark things seem at times and they will, one of the best ways to deal with this is to confront it head on and not let it beat you down.

    Easier said then done. Believe me, I dealt with chronic pain from an early age and for the longest time refused to give in. I did so many stupid things that I know do impact many of the problems I have had since.

    Well, I guess I'm grown up by now (only took 55+ years) and I know what makes the difference between
    a person with chronic pain sitting in the house all day in a chair without a smile vs those that try everything within reason to achieve that quality of life they seek.
    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 still have such a hard time with it. I know you are right, but I still can't get my head around it either. Sometimes it's o.k. but then that MAD thing flares up again and I get so MAD about it. If I spend too much time thinking about all the times I used to ride my gorgeous horse in the mountains on a sunny day, or working in my gorgeous flower garden and how that now I will never do those things again, the depression is overwhelming. I am teary eyed just typing about not ever riding The Blitz again. It is heartbreaking and devastating. I don't believe I will ever truly accept it. I just can't find a way to do that. I'm sure with acceptance, some measure of peace about most of it could be found. I suspect for me, that won't happen until Blitz passes and I won't have any more reason to long for a ride on him up in the hills. It would never be the same for me on another horse, so I think when that time comes, maybe I will find acceptance of the situation then. Not sure that makes a lot of sense to some, but it does to me. I have also thought about bulldozing my flower gardens and ponds and planting grass so I can't see how they need to be trimmed and weeded and loved and cared for and how neglected they are. I think that might give me a certain measure of acceptance too. I dunno, I might just be a little F'ed in the head...
  • dilaurodilauro ConnecticutPosts: 9,839
    Mouse, so much of what you are saying are things that people have experienced.

    There is no secret formula, cause if there was, I would have been a millionaire a long time again.

    Its important you can post your feelings. A lot of people who are suffering dont always express themselves and when/if they do, its not in pa positive way.
    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
  • with respect to pain. i don't even think about it. it is there it affects my life but i just accept it. it is like a divorce, you are mad and depressed for a while then after a while you get on with your life and don' even think about it at all. it is never brought up in discussion with my family. i do my job, go home, go to movies on weekend, watch tv, visit family, travel, all the things i did before my surgeries. to me it is wasted energy to think about it. there is nothing to do so why think about pain. i basically have a normal life except some things i can't do like i did before, play tennis, walk, run, yes i miss these things. if i can't play tennis i can swim for exercise. if i walk, i walk a little then sit down for a bit and then get up again and walk some more. the more you make your life normal, the better it is for all. i don't talk about it because frankly my friends and relatives don't want to hear about it. so i don't talk about it. in fact i don't want to talk about it or listen about it. it is boring to me and also everyone else. if someone asks, i will talk but it never comes up in conversation.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • True that chronic pain can be defined as >6 months, but even after 8 weeks as in my case it seems "chronic." I have noticed that being at work, when I am with a client, even when in moderate or even severe pain, I am distracted because I have to act in an acceptable way. This makes me deal with the pain for that moment. Also I believe the activity (getting up and down, going in a client consultation room, in and out etc) is good for my condition overall. So activity, and positive distractions, are a great help. I am fortunate that I can go to work with the disc herniation only because sitting is comfortable at this time. I just had some modifications (have to sit to examine clients, where I would have usually stood).

    Yes my life is different and I definitely can list the negatives. I would never take casually walking, or being able to stand without pain or having to find a way to sit, for granted any more. There is an excellent chance I will overcome this, and within a reasonable period of time and that gives me hope.

    Acceptance and hope don't have to be exclusive, and I would always hold out hope for future improvements. Just be realistic, and keep seeking reasonable ways to make some progress for your particular case. Avoid surgery when you can, and get it when necessary. Listen to your doctors and therapists and try anything you can to improve your pain control. Don't exclude any nonnarcotic alternatives even aromatherapy etc.
  • I don't talk about it either - except here. BUT, that sure doesn't stop me from crying on the inside daily over my losses. Everytime I go out and feed my horse and brush him and he tucks his head under my arm and nickers or licks my hands, I cry... I miss it. I miss it so much and nothing will ever replace it. I cannot find a way to dismiss that, or to get over that.
  • I agree with Mouse. No matter how much I want to move beyond the chronic pain and focus on what I CAN do, instead of what I CAN'T do, I cry or get angry.
    I dont even want to respond to a lot of the posts on here because I don't want to be negative or down.
    Most days I would be happy to stay in bed all day with the curtains closed. I am ashamed to admit that sometimes I can read a "successful" story here, and it will infuriate me. (yes, also f*ed in the head) Isn't that an awful thing to admit--I am ashamed that I am so bitter at times.
    I use to be such a positive person, to the point where I would always point out something positive about ANY situation. Not anymore, and that is an awful way to feel.
    I have to force myself to do things with my husband and friends. I have lost so many of my old friends because I stopped going out or having people.
    WOW. Sorry, sorry, sorry.......Must be having a really bad day.
  • Last year I wound up starting with a new PCP. After the first couple of visits, he asked me if considered myself to be depressed about my situation. I told him I wasn't, and I really believed that. He then went on to explain how people who suffer with long term chronic pain, wind up with a chemical imbalance of sorts in the brain. He said not to the crazy point or anything like that, but they just don't realize that they could actually "feel better" about themselves and their situation. He asked if I would be willing to try taking an anti-depressant for 2 months to see if it made any difference for me. I was quite amazed that after the first month I really felt so much better about things in general, could sleep better and was much more enthusiastic about life. The new PM doc I started seeing about a month later, was pleased to see the PCP had recommended the anti-depressant.

    Just some info for food for thought.


  • Pain is me, sorry i just went on and on with my own issue and neglected to respond to yours.

    Ron gave you the breakdown of how and what we need to do, but for some of us i think it takes longer to "get with the program".

    I hope that you can learn which things you can do and for how long and work it into a solution that will help you in the day to day stuff. Read here because there are a lot of people that give some excellent advice and have been where you are now.

    Mouse, Ron et. al... I have been stuck in phase 1 and 2 for longer than I care to admit. I have outbursts that, for me, would have been unheard of before all this went south.

    Mouse, I know you can't ride your horse, but could you maybe walk him a little bit... with stops on the way? just a thought to get you out with him in some way, though not what you'd want, I know.

    As for the gardening thing... this coming year I'm going to see if my brother could put in some paving stones that would allow me to possibly use *gulp* :( a rollator or something... I could sit on it when it's bad and be close enough to the ground to do some stuff... and roll it over the stones to look at the garden... and see if I can do some of the higher stuff.

    I don't know about this either... it just seems that I was the only one that got enjoyment out of the garden...and now that I can't maintain it, they may as well just pave it all under :(

    I have no answer. My doctor, though I love him, refuses to believe that I am or can be so disheartened by and about This.... because there is so much else going on in my life that "should" depress me and he knows about it....I've explained that stuff I HAVE to deal with, I just do...I take care of the people I must because I must. ...this... well, maybe... I haven't admitted it to myself yet.... I do have to deal with it... it isn't going away. I just don't want to give up that last wee smidgen of hope that maybe someday... :''(

    In one way, I hope to make it to the point that Jon has... but then I don't want to, either :( I just do not want to accept in myself that this is forever and will only get worse.
  • SORRY! I was truly "outofcontrol". It happens sometimes, more often than I would like it to.

    Yes, there are time when we all are able to deal with this pretty well and carry on with our lives. I can deal with it, but I still cannot accept it. I can make myself do pretty much what I need to do, and what I really want to do, even though I know I will probably have more pain because of some of the things that I do. I have five beautiful granddaughters, and if I can get down in the floor and play with them, I am thankful for that, but I know later my back will be on fire.

    I will probably continue to obsess over this and continue to look for some way to change things. I will never get over the fact that I believe that my neurosurgeon holds a great deal of responsibility for most of my problems.

    I am not angry with other "spineys" for thier success, I am angry because I am unable to find success.

    It does get better, I do have good days. Unfortunately, I still have a lot of bad days.

    Sorry again,
  • I think we have all been through points in our life where we get "out of control" about our situation and cry a lot at our losses. I remember making quite a few posts myself in the early days and getting the same responses you have.

    But it does get better, we learn to deal with it - it's not our old life, it's our new life and with it comes its own pluses, believe it or not. For instance, a little thing might truly excite us or even just give us a good feeling where a normal might just walk by it and never notice.

    Chronic Pain is a beast, but it doesn't have to get the best of us. We know it's knocking on the door sometimes, but we don't have to open it. We now are who we are and change things to accommodate it. I was golfing 6 months after my TLIF and because of my cervical issues getting worse, can't golf again now. So I ride in the cart with my hubby and watch. That's close enough for me now, until I can start golfing again.

    Anyway, sometimes you have to have a heart-to-heart with yourself and find a way to make the glass half full. We can feel lucky that we have a good doctor, a good friend, a good spouse or SO, good kids, good pet, etc. I also think that the winter is more difficult in dealing with the beast because there's so much less we can do - there's such a feeling of isolation when you can't go out because of the ice and snow, you don't want to drive afraid of getting in an accident, and even just being stuck indoors. I know that if I could have a wonderfully warm day where I could sit outside on my patio, read a good book, drink a refreshing glass of iced tea and watch my Wally play, I'd be a pretty happy camper.

    So good luck to all in feeling better about the beast at your door and learning acceptance. It will happen, but the road is a rough and rocky one and we have no choice but to travel it the best we can until we reach the smooth, paved part - and we may have to pave it ourselves.

  • Thank you all for the responses. It is nice to know others feel the same as I do, but sad too. No one should have to go through this. I feel like I'm in a limbo right now, somewhere between accepting and despair - its a strange place. One moment I just want to get up, forget about the pain and do whatever the heck I want regardless of the pain; I get angry. But then I try to do that and it hurts so bad after just a few minutes that I lay back down and swear I'll just lay here forever and forget about living a real life. I have a history of depression and anxiety so I know I could easily slip into depression if I haven't started already. My house is a mess and I want to clean it, that really irks me. My son is so good and he jumps up and does everything without being asked when he knows I'm feeling like this. He doesn't complain and tries to do everything to keep me happy and to keep me from hurting myself worse. I appreciate that alot but it doesn't substitute for being able to do it myself.

    In the last year I have a new boyfriend and I'm really afraid this pain is going to be the end of this relationship. When we met last summer I was doing really well, we were active, spent days at the beach, parks, took his kids on picnics and all kinds of outings - I can't do that now and I'm afraid come summer I'll still be like this. I cant' even go out for a walk.

    OK I'll have to stop now I'm making myself more angry.... going to do some breathing exercises and try to relax.
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