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Would any of you have felt the same?

SueDSSueD Posts: 545
edited 06/11/2012 - 8:47 AM in Chronic Pain
In a recent topic, there was a discussion about living ‘normal’ lives. You were talking, amongst other things, about cushions, which just made me smile.

Before you read this, my questions will be:

Tell me honestly, is it just me being over sensitive?
Would any of you have felt the same?
Have you avoided situations or done things differently (however small) just because of how other people might perceive you?

A couple of weeks ago, I went out for lunch with my hubby and 22 years old daughter. We'd been there before, so I went armed with my very thick, sturdy [and very brightly coloured] cushion. I wanted to enjoy my lunch so obviously wanted as much comfort (and height) as I could get.

Afterwards, in the car, going home, my daughter just blurted out (in a nice way though) "In future mum, when I'm with you, please can you leave your cushion at home?" I didn't understand what she was implying, so she clarified it by saying "it was embarrassing because I felt everyone was looking at you and thinking you were suffering from piles".

My hubby told her off for saying anything, because he then confessed that he'd been thinking the same thing. They were giggling about it, trying to make light of it to make me feel more 'jolly', but to be honest I was mortified - it didn't occur to me that others could perceive it that way, especially my own family! But on reflection, I suppose I could have given that impression with all the “ouch” noises I was making when I sat down or stood up. It was a self service buffet restaurant, so I obviously was going back and forth with my (very tasty) food.

However, in future, I think I'd rather sit in pain for the duration rather than have people think I was suffering from haemorrhoids. Not that there's anything wrong with that, of course, it's just that I am now realising how sensitive I'm feeling about some of the adjustments I'm having to make because of my back. It just gets to me sometimes. I know it’s a really insignificant thing – and I can smile about it now - but I'll definitely be leaving my cushion at home in future.

Tell me honestly, is it just me being over sensitive?
Would any of you have felt the same?
Have you avoided situations or done things differently (however small) just because of how other people might perceive you?

I'd be interested in your comments.

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 !!


  • dilaurodilauro ConnecticutPosts: 9,836
    It doesnt need to be a cushion,
    It could be a cane,
    It could be the way you may limp,
    It could be the way you have trouble getting up,
    It could be the scars that show,


    Where you get the comments from I believe makes a difference. From a total stranger, that might be something easier to handle.

    From people close to you, it may be a lot harder to handle.

    There are no rules when it comes to this. Everyone handles situations in different ways. That goes for the person making the comments as well as the person receiving them.

    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
  • There probably is some sensitivity but I completely understand your feelings. My 14 year old son is overly worried about me and it brings me to tears way to often. On top of that sometimes him and my husband joke about food that I eat because they think if I lose weight it will help my back...regardless of the fact that I am not that heavy and the doctor said it wouldn't matter. I get really upset and they think I am being oversensitive.

    Also what meds are you taking? I am taking zoloft for hormonal depression (before my back starting acting up before) and thank god I am on it because I think i would be even worse than I am in the being oversensitive and crying. I believe that the neurontin and pain meds make me oversensitive and emotional...so this could be it as well.

    Okay, sorry if this was scattered..I am scattered. LOL

  • I am not sensitive to things like that. I understand others are, I'm just not.

    But I'm terribly sensitive about my family being understanding. So for me, the mortifying thing was going to a restaurant and sitting in a booth and having a bit of trouble getting out. Well, my husband and son apparently forgot that I'm not 100% and just sauntered off, leaving my 13 year old daughter to try to help me up.

    I was so angry. I felt like everyone at the restaurant was watching and thinking "Boy, that husband really could care less about his wife." And I don't think it's true, why would he want everyone to think that?

    So that's my sensitive spot. I don't care if people think I have hemorrhoids, but if they think my husband doesn't love me that's a whole nother story ;)
  • As a guy, I can only say that I am one to suffer in silence and whine in private.

  • Having had them before- I can tell you that during a "flare" there is no amount of money in the world that would get me to leave the house for dinner..... It would be all I could have done to sit and eat in a chair at home with a donut.

    But I suppose some people might be ignorant to the fact that back pain people like to have foam cusions and could get that confused. I could imagine my 17 year old vain daughter saying something like that.

    When I injured my knee this summer I got some crutches bc/ the doc said crutches or a cane. I have a cane (from way back) but for whatever reason I was embarrased to use it at times. The crutches were aweful and a waste of money. I would rather limp with nothing than use the cane.

    I finally did break down and use the cane after surgery. Why was I embarrassed? Maybe I needed to have a cute pink and frilly cane? I have no idea!

    Happy- I would have been upset too. My daughter always tries to help me- she's tiny but it is the thought that counts. Hubby helps too but we don't go out much any more so I don't usually have that problem.

  • I prefer to stay at home too, but hubby likes to go out. So I do, to please him. But he needs to remember it isn't easy for me. I am not a complainer in general, but if I can't get up, I can't get up.
  • Good questions. I don't think you are being over sensitive. We go about trying to live as normal of a life as possible, and unfortuantely people will make wrong assumptions. We live in a society with rude and judgemental people; there isn't much we can do about that except start in our home teaching those we love how to be compassionate and accepting of the limitations others have.

    I seldom go out to public places because I am one who is very worried about what others think of me. I've been trying to get over that though, and realize that I can either sit home and let life pass me by, or go out and try to enjoy some of it.

    I think we would all like to be able to suffer in silence. Some of us have different situations, different pain control methods, different mobility issues. My way to suffer in silence is just to stay within the walls of my own home, and that is not healthy for anyone.

    Example: It took me a long time to get to the point that I could take a neck pillow to church. I can't sit without head support. I was always squirming trying to find a way to scoot down in the bench to lean my head against the back of it, or leaning my head on my husband's arm, or whatever it took. I would always go home after the first of 3 hours of church, or I wouldn't even go at all. I thank a wonderful friend who has helped me to get past that and do what it takes to make it through my church services. That includes always sitting against a wall where I can have full neck and shoulder support, and where I can use a neck pillow. I stick out like a sore thumb. Sure it bothers me, but I am confident enough now with myself to know that it is okay.

    A person needing a wheelchair isn't made fun of, or shouldn't be. A person wearing eyeglasses, or hearing aids, or whatever, is accepted. Your cushion (and my neck pillow) is just another tool to help you make it through the next hour or whatever you are doing. Who cares what others think? Well, I still do, but I'm trying to conquer that.

    So now if my family asks me to join them for dinner out, we just know to make sure our table is next to a wall and that I have either my collar or a neck pillow for added support. Otherwise I stay home. There are still many things that I, and probably you, can't tackle yet. But going out to dinner shouldn't be one of them. If you need a cushion to help you be comfortable, use it, and don't worry about what others think. I have 5 children. The way I walk embarrasses my youngest (13) and so I have to be very sensitive to her needs. That basically means I don't go anywhere that we have to walk together. She walks ahead of me (yeah, that hurts) or will lag behind and visit with friends when we are leaving somewhere. Yet she is at that age of trying to find confidence within herself, and so I understand this. She'll eventually get to the place that my other children are, holding my arm and helping me rather than being embarrassed to be seen with me.

    To answer one of your questions, yes I have avoided many situations because of what others are thinking of me. Some of them I am ready to tackle. But I still can't force myself to go shopping--I won't let myself use the scooter carts and there is no way I can walk through the stores. My husband even does the grocery shopping.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Sue,

    For me it was my first 'public' outings using a cane. For me it was a mix of emotions. My pride was stinging a bit, my 'showing' public weakness or disability etc. I've found now that people for the most part are fine, and too going public helped center my mind (wrap it) around the fact I do need help, and this cane (pretty cane by the way) gives some of "me" back.

    In writing this I just thought of something. I never had second thoughts of being out and about in my hard neck brace. Most people see that brace as "something serious" is going on with your neck; so they figure you did have surgery or something. A soft brace, I see all kinds of faces. You know those faces - "Oh, sore neck, bummer: Must have been in a car accident: faker for sympathy." But a hard brace is a whole different "look" of those faces. Shrug... The more this spine stuff affects me, the less and less I care about what others perceive anymore.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I figure if I don't look at anyone I won't know if they're staring or not. I literally just look ahead of me and at my family and/or friends. I never look at anyone around me.

    LOL It kind of reminds me of when we used to go camping and we would be on the way home and I had to go to the bathroom. We're on the open road, nothing for miles, so I figured that if I just squatted by the side of the road and covered my face with my hands, nobody driving by would know me and I'd be anonymous. Voila - no embarassment! LOL

    Now, I can't speak of the daughter thing because I have no children, but I imagine that that could be pretty painful. I admire Neck of Steel's attitude in accomodating her daughter until she's mature enough to understand that it's life, not embarassing. Very cool, NoS.


  • First I think you should do whatever you need to do to be comfortable at home AND in public. My only caveat is that it not imping on the reasonable enjoyment of others. So bring the pillow. Don't bring your recliner :)

    And you should not feel self-concious. Why would you care what a stranger thinks? Is what is in their mind more important than your enjoyment of life? Trust me strangers think lots of stupid things about others for no particular reason.

    Second you should have told off your husband and your daughter. Maybe at 22 she hasn't had to deal with her own aches and pains so it would be a learning experience for her. For your husband it should be a kick in the pants at this point and maybe a week on the couch :) But seriously it is not right for them to gang up on you for something so simple. SO get mad at them and hopefully they will learn from it.

    So take your cushion next time and if it still bothers you ask the waiter in a very loud voice "may we have a table near the buffet since my back condition makes it more difficult to get around".
  • I know this hurt your feelings when your hubby and daughter tried joking about the cushion on your way home.

    I see you used the word ''mortified", too.

    I know exactly what I would do the next time you all go out for dinner, and I hope you can muster up the courage to do what I am about to tell you!

    You need to order two whoopie cushions online. Blow these up and have them handy in your purse. Slip one of these under yourself when you go to sit down and look directly at your daughter when the sound goes off. Blame the noise on her! Cover your mouth and act "mortified" at her doing such a thing during dinner. Make a little scene, if you will.

    You can always save one for dessert, too!

    You're the mama... don't you ever let her forget that, k? :D

  • Tammy I love it!!!

    I don't have a hubby or a boyfriend, but I do go out with men a lot for work (i am the only female that I know of in my position).

    As far as I am concerned, my comfort comes before their feeling of embarestment. Really, what is pain compared to them feeling embarrested for a few minutes? Once you are sitting no one would notice. how much do you look at people when you are sitting down having a meal? You don't!! You talk to the ones across from you, so does everyone else.

    As far as your family, what do they care what some stranger thinks? Why is that more important then what you feel?

    Even if some stranger thinks you have something you don't, it would be a quick thought, "i wonder why she has a cushion maybe she has ...blank..." Then they would get on with the meal. It wouldn't be a big dela to them, I would bet that some are thinking that they wihs they had one too!!

    i think that in our minds we think that people are paying more attention to what we bring, our actions than they are. It's a passing thought IF THERE IS ONE. why worry about it?

    We have enough going on, enough to deal with, do we relly need to make ourselves more uncomfortable because someone may think, for about 10 seconds, why does she have a cushion, cane, etc???

    I know for myself, most of my pain is in my butt. Would your child or better half sit on a thumb tack? Cause that's what I feel like, maybe explain that way (if that's how your pain is).

    If everyone was jumping off a bridge, and was making fun of you for not wanting too, would you jump? To me it is the same thing. What I feel (pain wise), how I am comfortable is what is important.

  • I'm still laughing at what Tammy said. :) he he he...

    And...ditto everything Kris said!!!!

    I have a similar story. I have just started in the last few months using a cane. I've only used it in public a handful of times. I use it at home all the time. In public, I limp and hold tight to hubby. My kids are super, super good about being sensitive to my condition and making sure that at home I don't over do anything "Mommy, don't do that, Mommy, go lay down!" , etc. However, one of my nine year old twin boys is sooooo embarassed of my cane. The first time he layed eyes on it, I'd say he was "mordified". He begged me to never use it in public...or at his school or arounnd him, period. He has gotten a little better about it b;/c my hubby really teaches them how to treat/protect/help me.

    Do I think you were being too sensitive? Heck NO!! I would have been hurt too! And should you put your cushion away and only use it at home? Heck NO!!! You need to do what is comfortable for you. It's YOUR health!!

    I need to practice what I preach and put my pride away (like Brenda has done so well with) and use my cane more b/c I NEED it...I really NEED it to walk. I'm so prideful b;c I'm 37 and have a first grader and 4 other kids and I have to use a cane...but I need it...so WE need to do what is best for US...not our kids.

    [hugs to you] And do what Tammy said!!!! So funny!!
  • I'm with you... I think I would have been upset and mortified that they did that. My family has been pretty good about things, but every once in awhile I wish for a really big stick...

    I don't have kids, other than my kitties, but I do have a 7 year old nephew... he's the shining light in my life. He's usually very good about helping me in with stuff, going to the store with me to lend a hand and all. Tonight, he had his nana (my mom) call me because I was very late getting home and he was worried! I, being the butthead I can be at times thought it was a good night to stop at bj's for a couple of things (things that I should ask my brother to pick up, but since he tends to leave it all downstairs and I have to carry it, I may as well go myself ;p)

    My mom told him I'd gone to bj's, and I guess she said something about the way I sounded because he asked her to call his daddy so he could call and check on me! He's 7... and it makes me cry when I realise how caring he is!

    He's never said anything negative about the cane or the constant stops to sit, hehe... he actually reminds me to take my pretty cane when we go out and will seek out a sitting place for me. Being that he's 7 (almost 8 auntie!!) I'm sure that could change...I'm hoping it won't, but I'll work him through it if it does. Compassion for others is one of the "coolest" things there is, and he'll be a better man for being a caring child.

    Tammy!!!! I LOVED your idea... though I have to admit, I'm a wee bit evil... I was thinking to put it where they're sitting while they got up to the buffet ;)

    It's already been said, but it's worth repeating. It's no good to sit at home because we're worried about whhat others will think. It's bad enough when we HAVE to stay home because we're too sore....lets not make ourselves total shut-ins without real cause!!
    I'm guilty of it all too often... and it's been hitting me rather hard lately when I think of all the things I want to do with my nephew, but "can't" because of the walking thing. I would hate for him to look back and think, I was too embarrassed (of myself) to take him to all the places I've talked about!
  • First off, I love what Tammy suggested, might give 'her' some humiliation! I could see me doing that! (EG)

    Sue, the other thing I would have done is sit them down and tell them how *they* embarrassed and mortified you! I would then make sure they understand that YOU are in need of various things, a cushion in this case due to your conditions. Also tell them that it is bad enough if a stranger (who hasn't a clue) is stupid, but for "my husband and daughter" to be so insensitive? Dunno, something like that.

    Remind your daughter that NO ONE is guaranteed to live healthy till the day they die....oxymoron there huh?

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • i dragged my tempur millenium queen pillow all the way to fuerteventura and as well as using it at night to sleep with i also took it down to the dining room and the bar at night and did not give a fork about the many faces looking and the Germans waffling about the brit in his shorts wid his piloow !! ..so no sue i don't care anymore my comfort come before anything ..sod em
    tony x
  • dilaurodilauro ConnecticutPosts: 9,836
    I do like the way you think!!!
    Great plan on handling that type of situation.
    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
  • and thanks for all your comments.

    I'm not sure I can explain myself very well here, but I'll try. I know I am sensitive about certain issues (it's a long story about something that happened to me about 30+ years ago, which I don't need to voice right now) and I suppose because of that I've dealt with things differently to most other people I know. I understand why my hubby and daughter shouldn't have made the comment in the first place, but I also know that they totally understand me and my foibles and were genuinely looking at the situation from other people's perspective (and not their own). Still, I agree, they shouldn't have said a word and they are aware of that now.

    I've been thinking about this on and off throughout the night and have come to 2 conclusions:

    1) That the incident with my cushion and the way I felt about it actually refers in some way to the episode from 30 years ago - which I've obviously still not come to terms with 100 per cent in some ways.

    2) That I am obviously sensitive about my back problems, in that I don't want to admit that I might be 'disabled' and all that that might entail. I remember about 4 years ago I had a discussion with my then boss - he was claiming that under the DDA I would be seen as disabled and I was stating quite categorically that I WAS NOT! It's only since the fusion in July that I am [very reluctantly] getting used to the idea that 'reasonable adjustments' may have to be made because there are certain things I just cannot do any more. I have never wanted other people to view me as being a disabled person and have tried for 5 years insisting that I'm not. It's only now that it's slowly sinking in - and I know I have to deal with that differently now and to come to terms with it sooner, rather than later.

    Tammy - I wouldn't dare have the guts to do that, but it made me laugh just thinking about that scenario, LOL!

    I'm sure, in the fullness of time, I will get to the point that if I do have to use certain things that help me to be more comfortable while out socialising, then I can say "Sod 'em", it's their problem, not mine!

    Does all the above make sense, do you know what I mean? Hope so. Thanks again for your input.
    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 !!
  • the idea of using a big back to put the cushion in is a great one. I'll look around for one big enough, thanks.
    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 !!
  • did I say big 'back' - what am I like? My head's a shed! BAG - That's what I meant of course!!! Mind you, the thought of a bloke with a big back isn't such a bad idea either, LOL!!!!
    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 !!
  • Sue you caught us!! It's easy to say "do this" but not so easy to carry through. Like you I've stewed in silence many times. My kids know that when I actually yell at them it's a sign that I'm in alot of pain and they back off fast.

    I'm happy that you are beginning to allow yourself to need help. That's a biggie. Hopefully now that you see that the rest of us are on your side you might decide to let loose on them. Like most things that parents have to do, educating your daughter may be painful but it will be a very important lesson for her.

  • If you were out and saw someone with a cushion, what would you think? I know that I may pause and wonder what problem they had, but I would feel compassionate that they were suffering. Even more likely, is that I wouldn't even notice!

    Now if my daughter or son at 22, voiced that they were embarrassed to be out with me, and then my husband agreed and then they joked about it, I would feel upset! :<

    I suppose our families need time to get used to the idea of our problems and helpful things we need to carry around with us. Have you let them know how their comments made you feel? This is a learning experience for all of us, our families included.

    I have a very pretty large bag that can take a cushion. I take that with me when we go our for a meal or socialising or the theatre/cinema. It means that I can be comfortable, but at the same time it just looks like a pretty accessory. In fact, my daughter (32) bought me another large bag for my birthday, so I have an alternative for my cushion when we go out.

    I would suggest that you treat yourself to a nice large bag, so that you will feel relaxed to take it with you and that will fit a cushion in to keep you comfortable.

  • Ah Yes, Easier said than done.

    I did love Tam's idea!

    We all have to deal with our conditions and the emotional "upheaval" it brings us. So we are adjusting. Trying to figure out what to let bother us and what not to.

    Sue it sounds like you may have had a conversation with your family and they know how their comments made you feel. Good! It is so important to have a good support system. The line of communication needs to be open and truthful.

    As to my take on how others, particularly strangers, view me. Well, quite frankly, it's just NONE OF MY BUSINESS what others think of me. Their thoughts are their own and do not concern me.

    Here's my take on it. Most people aren't really thinking MUCH of me anyway. Oh yeah, as Snookie said maybe for about 10 seconds. Probaably not even that much. You see most people are self serving.

    We think they are all consumed with us and the truth of the matter is they are not. (We would like to think they are but they just aren't.) They are concerned with themeselves. "I wonder if my earrings match, Do I look okay in these pants, I wonder what my boyfriend thinks of what I said on the phone, man my head is killing me, I would never bring my own cushion and have people look at me, I can't wait to get these shoes off....You get the picture. Humans are self centered in their thoughts only thinking of themselves. They just aren't thinking of others as a rule!

    Yes, even when our families make comments it's understandable as it is them thinking of themselves and how they THINK they are being perceived BY OTHERS. It is up to us to teach these young minds, (and sometimes old) as Brenda said, that no one is gauranteed a HEALTHY life.

    So take your cushion or your cane or what ever you need and carry on. Honestly, when you're out, are you looking at all those people thinking about THEM? My guess is no.
  • To flip the coin the other way from FROGS post. I.e., another way to think about it, because what she wrote is dead center punch! Like she said, humans are self centered types. Keeping in what she said, how much do YOU look around and make mental comment on people? I think you will find (as most do), you see people, but you don't "see" people.

    I had a bit of a hard time with it, as my career I *had* to be consciously aware of everything and everyone around me. After I retired my legs got worse and worse, so I sucked it up and admitted to myself I needed a cane, or else my activities were going to shrink to almost nothing! I don't think I will ever get rid of my 'assessing' rooms I enter, just like to this day my most comfy 'pause' position is "parade rest' ...and I've been out of the military since 1989! Same goes for the situation you alluded to from 30 years ago. Some things are forever part of us, the key is to remember just that, they are a part of us, but each day evolves and is different. You're probably a lot stronger than you realize! *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I do the same as Jelly...I have an oversized bag and place a small but firm pillow in it. No one knows its in there. No questions, and I stay more comfortable.

    Maybe have a heart to heart talk with your daughter, and give her some insight to how it feels to have chronic pain.

    It really doesn't matter what other people think. If you are miserable, you can not enjoy being with the ones you love...and that is whats most important in this life.

    Take care,

  • Sorry to hear that hurtful story. I think Brenda(AVI) has a back cushion,plastic can't remember the name and I think it may come in a tote bag. I think a tote bag is a great idea and I will use one to bring my cushion next time I go out also as we hardly go out but it's my Mother's birthday coming up and was worried how I'll be able to sit. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Charry, I made mine out of memory foam! I've only had one comment with mine.

    "Why the cushion?" *answer* "My butt isn't filled with enough padding for these hard seats! Isn't dinner suppose to be enjoyed!?" *reply* "Neat, never thought to do that. Good for you, enjoy your dinner!"

    I also have a "BackJoy" that you place, sit and scoot back. Butt supported, better positional posture, less pain - and it's cute! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I have a lumbar roll that I use mostly in the car, but have taken it into a restaurant before and nonone has ever said a word.

    Brenda, you are just so nifty and such a hoot!!!

    Sue, keep using your cushion sweetie...you need it.
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