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How do I get people to realize im not the same person I used to be

shaunzldysshaunzldy Posts: 14
edited 06/11/2012 - 8:48 AM in Chronic Pain
My problem is getting people to see im not the same person I used to be, my husband, my kids see this but other family members still cant get it through their heads that I cant do things. My parents know I am in pain but I dont think they realize how bad it is and they want me to go shopping, make jelly like we used to or just come and visit.I get so angry sometimes and cry at other times. I have a sister out of state that just dosent seem to get it and I have really had it with her remarks about me just being a drug addict and I dont really need them. I also have a daughter out of state that I see once a year that just dosent know how bad things are, I dont like to mention it because she dosent understand my everyday life. I dont know what to do beside curl up in my bed and just dont answer the phone calls. They dont realize I cant cook anymore or go shopping or the other things they take for granted. How does everyone else deal with this.
annette m ichenberg


  • I understand what you're saying. My hubby told me the other night, and our Thanksgiving guests, that he used to think that spine surgery was just like if you broke your leg. You get it set, wear a cast, get the cast off and everything is ok. He knows now that it's a lifelong issue and will most likely never end. I don't have the same problem, but then again, I don't have a lot of family to deal with and my one brother treats me like I'm going to break at any moment.

    But, I would suggest you have your husband and/or kids explain things to your mom, sister, etc. Maybe coming from him and/or them, they'd understand that when living with someone with spine problems, you begin to understand and then have to accept that it's a lifetime journey. It might even have to get to the point that hubby might screen your phone calls until they "get it."

    This isn't a broken arm or leg, it's not a cold or the flu. It's a life-alterting situation that we deal with on a daily basis.

    Maybe sending them the "Letters to Normals" would help. But I really don't know because each person who is blind to this has his or her own threshold of understanding and reaching past that can be difficult.

    I wish you luck in getting your family to understand. Having them stand by you would make things easier when things are already too difficult as it is.

    Take care,
  • My husband and one daughter are awsome, they see my pain and do everything to help me, but my other son (dosent come around much but understands the pain, but I dont think he can deal with watching me go through it) and my other daughter lives in OK dosent see the pain so I dont think it clicks. My sister- I try not to care what she says because were not close and she lives in Texas. But my mom expects me to do the same stuff I used to and I cant.She know im in pain and say's she wants me to get better but she somehow makes me feel like crap when she asks me to do something and I cant. I just want to avoid all calls from her. I love my mom and dont want to cut her out of my life.
    annette m ichenberg
  • I hear you loud & clear! So sad on top of this new life we are being forced to live that we have to deal with all the family/friends issues :(

    My family about flipped out the first time they seen hubby put my shoes on for me. I was like "oh you should be around every day when he dresses me, showers me & helps to use the rest room - as THAT is now our new normal".

    Thankfully those days have passed and I am pretty good at self care now - but even then it was not good as then they were like "well you can dress your self and stuff now, so you must be better".

    I finally have learned to lower my give a shit level when it comes to people like that ;)
    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.
  • Wow Im sorry ms humpty at least I have chance that surgery will help somewhat. I am thankful that I have the love and support from my husband and daughter, which I am sure they get stressed with me sometimes but they are the ones to be there and wipe tears, tie my shoes and whatever else I may need done so I try not to let everyone else bother me but sometimes it is hard. Some people just dont understand how hard it is to just put one foot in front of the other and move it somedays and today is one of those days which makes me a complete physco. God bless my hubby that is rubbing my back and just putting up with me. I wish I was stronger to ignore all the negative people and im trying.
    annette m ichenberg
  • if you were having a baby or something wonderful...people are loving and supportive. Chronic back pain has a negative stigma and people in general do not want to deal with back pain and all it entails.

    It is very sad, but that is the world in which we live. I have been going through the same thing with my coworkers, and I hate to hear that others have to endure the same. I like what MsHD said about getting to a point where you don't care so much. I'm not at that point myself, and had a crying session about it on Thanksgiving Day...hope to get there soon, and hope the same for you as well.

    Take care,

  • most people are ignorant/uneducated when it comes to spinal probs.
    this is prob due to not having experienced spinal issues, they havnt had a need to "get it"

    statistics say 95% (sorry i dont have a ref i can quote)of back pain is the short lived/interrmitant muscle type, therefore most people can only relate to this
    the 5% remaining spinal issues, that impact severly on our ADL"S and will continue to do so for the rest of our lives, unfortunatly are infatheramble for most people
    another factor , is that people cannot "see" spinal probs
    i "toy" with the idea of putting on the lumbar brace and cervical collar, and think "maybee " this will help them understand a little.....

    you have your immeadiate family , your husband and child that are supportive, caring and compassionate to your spinal probs, that is wonderfull, maybee they can convey to your other family members .....

    i no how difficult and upsetting this is , some people get it a little more than others, but unless you have experienced yourself , i dont think anyone can really understand
    if people are willing to listen, then maybee some education on your spinal issues would help.
    i have for sometime stopped referring to my probs as "back" and say spinal, as this is a far more apt decription

    take care
  • Most people can only understand what they can relate to. If you've had spine surgery, those same people will equate it to having an appendix removed, or a bone set after a break, or a kidney replaced. I.g., you had surgery, you should be better now, right? Also too, with "back/neck" pain, they associate it with their own experience of when they "waaay overdid on something" and felt better in less than a week or two.

    I changed my description to "I have spine issues", some of which were helped with surgery, some of which did not (and will not) resolve, and as such I might have some days that are better than some, but this is the best I am gonna get, and too the damage might progress. I then ask them (as everyone has), "Have you ever hit your funny bone?" Of course they are going to say, yeah, hurt like hell! Then (if this is what you get at times), tell them to try having that pain shoot down your leg or arm so bad you can barely function, and this pain in one level or another is with you 24/7 vs the few seconds of pain they felt smacking that elbow!

    I just had a major family reunion in Texas, and had no problems with any of the family (sadly though, I found we have quite a few spineys in the mix!!)members I met with. I also noticed when a few asked about my gait and obvious pain when I sat, stood (from being seated), or walked, my hubby explained I had ongoing spine issues and nerve damage. We then moved over to Jacksonville, Florida, and same thing. Everyone was fully understanding that "Brenda" is on the time table as allowed by how she feels on the pain department. Had zero problems. I think too, in Jacksonville (the more immediate family) I or my hubby kept them posted and up to date with surgeries and the results etc.

    Your hubby can be a BIG help in family understanding that we are forever changed, and no specific day can be a guarantee of even making cookies, never mind going on the nature walk with em! Hope that helps. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi again.

    I'm glad your hubby and daughter "get it". That's more important than anyone outside of the house. I know how much it hurts not to have your mom understand - it's your mom after all, and who do we like to talk to when we have a boo-boo? Mom, of course!

    I had a thought, though - when you have surgery, will your mom be there when you get to your room? If so, she might get the idea of how difficult this really is. Apparently after my 1-lvl TLIF I looked like I was dying when they rolled me out of recovery - I was gray and couldn't focus on anything and had a terrible time waking up.

    Perhaps if she sees that, she'll open up her eyes, at least for a while.

    However, barring that, like others have said, you can only do and say so much. We understand how you feel and more importantly so does your husband and daughter - thank goodness for them.

    Things may change in the future during or after surgery to make them understand, but until then, try to igore the ignoramuses. It only make your pain and problems worse to worry about them. Try and just worry about you now, with your hubby's help.

    Take care and I'm sure glad you have us to pick up where some of your family leaves off.

  • Thank you all so much for your insight, it helps so much to have people that deal with this to talk to, I wish I would have found this site a lot earlier. You all are so nice-Thank you. I just wish there was a miracle pill to make us all better. Still waiting for the ins company to approve my surgery, but now its going to wait until after xmas. Everyone have a great and painfree day.
    annette m ichenberg
  • As you can see you aren't alone. Hopefully that will help you deal with how others see you. It might also help to be proactive. Tell them before they have a chance to assume. If you usually make jelly with mom in December (for example) then call mom in November and say "I can't make the jelly this year, hopefully I'll be up to it next year". Or substitute..."I can't do the jelly but my daughter wants to learn so I'll supervise this year".

    My biggest problem is that I don't feel comfortable talking about how I feel. So no one other than my husband, kids, mom and siblings know what is going on. Of that group my kids understand the best...they read the signs very well.
  • Hi Shaunzlady;

    As Kris said, you are not alone in this. When I first started down this road, my hubby actually was the one who was not understanding, it took him going to an appointment with my NS that he finally realized just how bad off I really was. Maybe if you take your mom with you when you go to see the surgeon, that might help her understand too? Then, if your mom is on board, she can talk to your siblings and other family members and hopefully swing their opinions around. Other than that, just remember, it's really none of their business what meds you take, or anything of that sort. It's hard, but try not to take what they say to heart. They really do not understand, and never will, until they've walked one day in your shoes. Cathie mentioned the "Letter to Normals" in her first post, here's a link, who knows, it might help:


    And if they end up not understanding, well, you have us here! Take care;
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • I forgot that I too now tell people "I have spine injury". That has helped with the new people in my life. Plus seeing with me with 2 canes and now a walker - well duhh lol ;)
    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.
  • You guys (girls) are just so wonderful I am happy I found you. Thank you so much for your help and advice. I just recomended this site to someone on facebook so hopefully she will come here.
    annette m ichenberg
  • dilaurodilauro ConnecticutPosts: 9,859
    I think a lot of this comes in 'stages' or 'phases'

    When we first have spinal problems and others see us . And see us as NOT being able to do the things we did before, they tend not to understand. For many, their mind set is more of Well, everyone has had a back problem before and it clears up in time

    Then later on, some people close to us get tired of us being in pain, seeing that we dont do the same as we did before, etc.

    Then it gets to the point where people start to resent or feel jealous of our situation. Most of that, I believe comes for a lack of understanding of spinal problems and their impacts.

    What really becomes a difficult phase is when others start to turn the situation towards themselves. They start to talk about having a bad back, their neck hurts, muscle cramps, etc

    None of this is easy and so many times just leaves us frustrated.

    We can not change others in terms of what they see and how their feel, but we can give them some insight into our problems. Giving them a blow by blow story, with all the pain, problems, etc generally does not work

    I dont have any real good answers, all I can discuss is the experiences I have seen over so many years
    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
  • The only thing I can add to the comments posted by others is that until someone walks in your shoes, they'll never understand.

    I've had people come up to me and say OMG, is this what you went through?!! Now they get it.

    Best of luck on your upcoming surgery, may you get lots of pain relief.

  • You guys pretty much covered it! I just spent a crappy Thanksgiving weekend because my shoulder hurt, my back was doing the spasm thing, etc,

    I did find comfort it the knowledge that sometimes age has little to do with aches and pains. My nieces husband had shoulder surgery many years before mine and on Thanksgiving he was in obvious pain. He said he wasn't sure if slept on it wrong or what. I told him that he was not the only one and I suspected it was the weather. I feel sorry for him as he does not need this at his age, around 26 IIRC.

    Close in, my people are only somewhat understanding.
    I do as much as I feel like on good days and usually pay a price for it the next couple of days. I think those around us can be too close. They whitewash out the moans and groans and focus on the stuff we did yesterday. Not all do and those who are surrounded by these people are indeed blessed. Though sometimes it would be nice if they just let us do what we wanted too :D

    Meds, Keep a list in your wallet or purse, Use a daily divided box, no labels showing and keep it on your person or locked up in a bag or even the car if needed for when traveling to those who do not "get it" do not take meds in front of them. If the question is forced and you feel it must be answered. Tell them it is one of the new meds for nerve pain and it is personal please stop asking as you don't like to talk about it anymore than you wish to have to take the meds!

    I find myself very tired of this circle of life/pain crap. If I see Simba, he better have a flack jacket on!
  • Hello Shaun....I agree with everyone on this issue....thank God I have not came across many people that dont sympathize/try to understand!! Most of the time as soon as they get a peek at my scar they shut up or ask questios!! Which I love it when they ask because that shows at least a little bit of an open mind!!

    I dont really think I want ANY of the people that I love to really understand this pain...that would mean they would have to feel it!! I would not wish that on ANYONE...not even my Hubbies Ex!! LOL:)

    Just stay strong and concentrate on the ones that are supportive!!
  • In my opinion anyway… The people you really love and care about; I might try writing them a heartfelt letter and send it to them. I believe I would try to describe in detail the pain you feel, especially regarding your sister. Maybe you say you don’t care, but she’s sister – of course you care. You close that off because you don’t want to be hurt – OR I could be wrong I was wrong on one other occasion.. J/K 
    I would describe how you feel, what you go thru in a day, and what you have given up. Ask them, do you think I would willfully and freely give up doing…. (Whatever your fun things are that you have had to give up). Explain that medication is the only way you have of getting rid of the pain, or at least tampering it down for a little while.
    If they cannot appreciate your willingness to share that painful part of you with them, then don’t worry about it. You have done what you can and that is all any of us can do. Tell them you have heard the hurtful comments about “drug addict” and how you wish so much you could be like them – pain free and never have to depend or rely on another damn pill for the rest of your life, but the sad fact is – you are not like them. You are in extreme pain every minute of every day and there is nothing you or your doctors can do to change that.
    Take care of yourself, if they listen – great, if not – their loss. Take care - Marion
  • Hello,
    Aesthetically we may seem the same as we have always been and it is up to us to communicate our desire to those who we feel are sufficiently responsible to help us and not use that knowledge against us. As Dilauro said, we do this in incremental stages and it is what E Goffman the social scientist called the “ the known and the unknown” in his book Stigma.

    It telling others we are divulging part of ourselves and it is disappointing when the response we expect is not forthcoming, that could be based on our expectation of what we think may happen that differs from reality. Others do not have to understand pain to help us, and the best support I had was from people not in pain, but who had empathy, understanding and time for my view and opinions, to try and help.

    People are not mind readers and rarely are they thinking what we think they are, it is up to us to inform and communication in the best way possible, that in itself does put us under pressure to be trying to function normally while requiring help from those we would rather not tell, that duality of roles is not easy and once the genie is out of the bottle it is almost impossible to return.

    We all feel that need to conform and do physical things that are beyond our daily capability and it is not easy telling a loved one, it is not that you do not want to do these things but they are problematic and at times impossible, we already feel that guilt of disappointing others and do more that we should and increase our pain directly as a consequence. Hiding from yourself is understandable and managing pain does not come with a handbook, it is a learning process and being assertive is not always easy when we are thinking of others rather than the pain we will endure in accepting more than is reasonable.

    I know how to say no, I have learned it is part of my management strategy and that only I suffer from saying yes, it is not selfish to put yourself first, you need to be doing things that make the pain less than more and pacing is a key aspect.

    We all try to do more every day and as you, sometimes the most simplest things become impossible, we should not be made to feel guilt for pain that is imposed upon us, nobody else is being asked to divulge what frailties they have, so write a letter or have a face to face chat, we have all been here and even after all this time with some of those who know my situation they ask me to more, I have responsibility to spread my well-ness between my family members and myself, work and responsibilities.

    Take care things will get better, if they are not working now, change them.


  • I know I'm a few days late on your post but I too, just found this site. I had my first surgery on 2003 and since then, my family has been the most understanding especially after hearing my wife tell them how I was/am and what my limitations now are. The one thing that I have learned, especially with co-workers, is that until they have a close family member where they see them every day or live with them, they do NOT understand. Luckily enough, I have ran across some of the people I work with at the Sheriffs Office that has had back issues or has had a family member (wife, husband, brother or sister) that has had issues and they know and can vouch for me. It's not that I needed them to but it helped ease some of the raised eyes that I observed.

    If those people in your life are so narrow minded that they cannot see what you are going thru, you just have to let it go. You have enough to worry about in maintaining a lifestyle that YOU can live with and that you can at least have some kind of a quality of life that you can deal with. Until others are in your/our shoes, they will never truely understand. Hang in there and just do what you can do without over doing. You have to make YOU happy, not your sister. Let her think whatever she wants to think. If it were me, I'd tell her what I thought and be done with it.

    I had my second surgery on the same disc but this time it was a fusion. I'm having yet major issues with it now and just got some not so good news from my doctor today. I have seen my wife almost in tears watching me thrash around in the bed and be so out of it in pain or on pain meds that I was totally someone else so I know she knows what kind of quality of life I have right now. Again, hang in there and while I'm new here, I'm sure I'll be here for a long time after hearing what I heard today. You have us to talk to and know what you're going through.
  • shaunzldy said:
    My problem is getting people to see im not the same person I used to be, my husband, my kids see this but other family members still cant get it through their heads that I cant do things. My parents know I am in pain but I dont think they realize how bad it is and they want me to go shopping, make jelly like we used to or just come and visit.I get so angry sometimes and cry at other times. I have a sister out of state that just dosent seem to get it and I have really had it with her remarks about me just being a drug addict and I dont really need them. I also have a daughter out of state that I see once a year that just dosent know how bad things are, I dont like to mention it because she dosent understand my everyday life. I dont know what to do beside curl up in my bed and just dont answer the phone calls. They dont realize I cant cook anymore or go shopping or the other things they take for granted. How does everyone else deal with this.
  • Your family loves you and are only trying to mask what their really feeling. See, they still see you as that healthy vibrant young lady that can still do all those things and more. They are not excepting that your hurting. Some people don't want to see a loved one sick or in pain so what do we do? We act as "IF" As if there's not a thing wrong and what you mean you can't? I remember when... So kindly communicate to then what it actually is like for you on a day to day basis. I find myself doing that alot with friends and it makes it easier for them to except when I break out in sweats or have when I make so loud of noises to get through the pain at that time. I have L1-S1 Degenerated Disc. L4-S1 Herniated Disc. Curvature, Spinal Arthritis. List goes on and on. Lets just say that I qualify...
    Remember Communication, Trust and Honesty are the 3 main factors that hold a relationship, Family and Friends together...
    Hope this helps.
    Smile Always
  • I agree, it is so hard sometimes for people to "get it." Yet, I didn't understand chronic pain until I had to deal with it. I am lucky in that my sister understands all of my battles, my ups and downs, my new limitations, but she appreciates all of this b/c she has dealt with chronic pain for 15 years. I do not believe that pain is something people grasp easily, or adjust to quickly, be it the patient or the family. I didn't want to believe that I would be different now, its been my biggest battle.
  • I hear you. It is so incredibly difficult to live this daily, and snap. Let alone put on a happy face for everyone. i've had chronic back pain for three and a half years, and I cant tell you how many times I got the line from family and friends that I wasn't my old" bubbly self" I wanted to shake them and punch them at the same time. I especially had a hard time getting my parents to see it. Finally I took my Mom to my neurosurgeon appt, and it felt amazing for a renowned back surgeon to tell me he was shocked I was functioning whatsoever,Let alone walked in the door on my own. and that he had hardly seen cases like me my age. It shut her up pretty quick.I went on to have a fusion from L4 -S1 nine months ago. People can be insensitive.I cant tell you how many tears I have shed over it. I feel like the people who see you daily are a bit more aware of just how difficult it is. But I think people need to understand that there is so much that they cant see, and typically by the time I wrestle with myself inside and deal with all I can bare, and I finally say that I am in alot of pain, they need to realize how long I dealt with it even up to that point. Hang in there. I'm so sorry
  • I guess the main problem with my sister is that she dosent SEE me she lives in Texas and I live in MI and she comes home about every 4-5 years so she cant see my everyday life, I just have ti stand up for myself a bit more i tend to try to make everyone happy and I cant. I need to make me as happy as I can and in the end I have to be the one that deals with the pain from over doing it. Thank you all for your replys and it has helped a great deal. To all a pain free day for everyone. Happy holidays.
    annette m ichenberg
  • I haven't even been diagnosed yet but I just had this discussion with DH.

    I've been able to earn a decent living working from home, but my biggest income stream got killed with no notice a couple of weeks ago. It's a bureaucratic type glitch, maybe it's fixable, we're trying, who knows.

    But, it's forced me to have to be out in the world, running around more, especially driving, which is hellish for me. I'm such a Type A & driving stresses me out on my best days.

    I have a lot of pain, my GP thinks many of my symptoms are coming from an old neck injury, actually, several about 30 yrs ago, starting with a bad rear ender.

    I get neck headaches & pain. The simplest task, ie stuffing envelopes will cause it to migrate into my T spine area & ramp up the misery.

    My low back is a mess, I've always had bad hip pain, it's radiating into my legs & feet now.

    I was swimming laps everyday but it aggravates my back so now I'm mixing it up
    with water jogging & focusing on using my abs more in the water. I go absolutely berserk without aerobic exercise daily.

    My wrist hurts terribly & not improving. My hormones are whacked. Everything hurts. I've got one bad knee & one breaking down. Just had 3 Effluxa shots for the bad one, which has helped.

    I'm on vicodin & Soma at night. The soma has helped with the am neck headaches as does an ice pack.

    First week of January, I can get tested. GP ordered a ton of bloodwork to rule out fibro, RA, etc. And we're starting with neck xrays. I haven't talked to him about my low back yet.

    Gosh, just reading this makes me realize why I'm a wreck. I'm a workaholic & frustrated that half a day of running around wipes me out. Does pain itself cause exhaustion?

    Today, I vowed to quit beating myself up. This is what it is, my abilities are what they are. I can only do what I can do. Today, I'm staying home to take care of myself. Whatever work related stuff comes up, I will deal with as best I can without overdoing it.

    It just is what it is. I can't feel guilty for being less productive than I once was & hopefully will be again.

    Today is my day.
  • I've found in my current situation that I tend to protect my family. I don't want the looks of sympathy and pity. I don't want everyone constantly trying to do every little thing for me without giving me a chance to try. I can't stand to see them suffer through this pain.
    Only my husband and Mother in law are exposed to the true nature of my pain. I shield everyone else as best as I can. Mostly for my own sanity. If I didn't require so much assistance from my husband and MIL I'm not sure I could fully expose them to the pain either.
    Sometimes I feel like if I honestly express my pain I won't be able to control it any longer. I feel as if my pain is locked in a room now, a place where I can cope with it. Sharing it with others unlocks that room for me.
    Although I know when we have family gatherings some people must wonder if I'm really in the pain I claim to be. It is hard to ignore. They can't possible know the amount of medicine I've taken to make it there, and how many days I will suffer after for going. They don't know that even with a smile plastered on my face I am holding back grimaces and tears. But for me my pain is an extremley personal and private issue. It is one of the most emotional, sensitive, and frightening aspects of my life. My husband is the only person I feel I can share this part of my life with.
    Is keeping my pain private unhealthy for me in the long run?
    Is it wrong to want to protect those you love by shielding them from the true nature of your pain?
    Is faking it till you make it really so bad?

  • i read your post and cried.
    all this pain. you shouldn't have to exist in this way.
    emotional pain that we repress usually gets worse.
    i went through a time when my husband would not look me in the eye, he look past my heard. he worked double overtime, so i did not see a soul a for weeks. i couldnt get to the front door, or eat. i stopped talking to my mum, avoided her phone calls because she kept giving free advice. and at that time it was the best thing i could do. my work was like that too, oh you dont look so bad, even though i was struggling to sit at the table for my farewell lunch. i hated them at the time.

    then my mum got cancer of the mouth. she is okay now. but if id spoken too her sooner, i might have got her to go to the doc sooner.
    now i tell my husband what i need him to do.
    sometimes he asks me to do what i cant. that ticks me off, sometimes i do it anyway, fully aware i'll be in bed for the next few days.
    sometimes i am good to me and my back, and other times i forget overestimate, ect.
    it takes energy every little bit physically and emotionally just to exist.
    dealing with crap from other people, is not worth it.
    i journal my pain. it helps and then i dont weary others with it, it cant get trapped inside me and eat up my weary soul. physical pain- emotional stress and at least that part can be dealt with.
    and others well...
    i made peace with mum, looking after her hurt me but i needed to do it.
    i dont speak to anyone from work anymore.
    my husband is learning. i keep explaining. he brings heat ice and drugs and water. and back rubs on demand even when he's tired.
    at the start of all this he offered to kill me.
    i laughed at him and wept
    how is it worth it to live in constant pain. he did not understand.
    we or at least i do, because of those of whom we love. they are the reason.
    humans are strongest when connected to others.
    that when get the most amazing stuff done.
    this forum, means i am connect to others, this makes me feel stronger. everyone gains energy in different ways, some like lots of people other like to be alone.
    whatever works for you so that your pain does not hurt.
    please dont suffer at family do's.
    your life your body are special now. do a holiday phone call on the web, or if hubby can help have dos at your house. i have a bed in my lounge and see people from there, also i can escape to bedroom if it is too much. my gran has awful back problems and used to sit dosed up to her eyeballs at xMAS. now we do little short visits. let others do the explaining, that is just too hard to deal with. no one gets back pain until they live with it and through it. i didn't until it happened to me. retreat to where your safe and as pain free as possible and save what energy you have for what you want to do. things that bring joy. even if its hard to find. i wish there were really things i knew that would stop pain. i wish too many things. i wish i could tell you a doc or treatment or medical journal. i find oblivion and succession from life and pain in the pool. i wish you all gentle holidays. sorry this is so long sometimes this all just comes spilling out.
  • heck, I loved reading you, so poignant.
  • Thank you for your suggestion regarding the journal. I do tend to feel better after expressing myself in these forums, I don't know why it hasn't occured to me to release my feelings onto paper as well.

    My husband too has been amazing through this entire process. We did go to counsling this summer together because our communication was failing with all the pain. I've shown him things to watch for so he can tell when the pain is becoming unbearable. Which has somehow opened us to each other again.

    I've always been a very independent person. I didn't grow up with a large supportive family, and learned to depend on myself. The hardest thing for me to do is ask for help. I don't know why, I just don't accept help well. I feel as if people think I can't do it, and I tend to want to prove I can. Which sounds so childish now that I write it down. The pain has forced me to accept help with virtual every aspect of my life now, it has been a very humbling experience.

    I contacted my NS today to see where we are in the process of approving the SCS. Paperwork had been misplaced and nothing has gone to my insurance yet.....ahhhh. It's so hard to have patience in these moments. I know to all the various billing/insurance associates it's just another job, another paper to be filed. For me it's a ticking timebomb in my body.

    heck, I am so glad you made peace with your mom. As you say the one's close to us, the love of our families, somedays that's all you have. The days when I don't think I can possible bear anymore, when I'm done crying...I try and focus on the experiences I still want to make with my children. There are so many wonderful experiences that we still have a chance to be a part of, if only the pain will let us.

    Thank you again for your responses. Happy Holidays.
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