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What am I invisible?

sagehenssagehen Posts: 221
edited 06/11/2012 - 8:22 AM in Matters of the Heart
My husband just got home from work (the night shift) and said "How are you doing today?" Which in itself is out of the norm, but I told him if he really wanted to know, I was hurting and pretty much always do etc....or at least I thought I was telling him that,I was in the room by myself, he asked the question and then left the room! Like I said this is routine at my house,but today it just really ticked me off! I am so tired of being alone and living in the same house with someone! I had my 2 level ALIF fusion in May, alone, at a hospital 200 miles from home, he took time off from work, but not for me,he decided to stay home and visit his parents , who were at our house to take care of our daughter, while he was with me! Through this whole thing I've been alone! Unbelievable! Nothing new for me , but frustrating and maddening nonetheless! When I read about those of you that have "cried in your husbands arms" or that "your wife is your hero" I just cry.
Just another day...
sagehen
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Comments

  • am so sorry that you are having to go through this but if it is any consolation , you do have all of us so you are not completely alone. I know it isn't the same as a flesh and blood person sitting next to you but it has gotten me through many a rough day. If I can ever be of any help or if you just want to talk then shoot me a PM , I will always respond , as soon as I see that I have one.....take care....Miki
  • Hey hun, Sorry to hear about that, sometimes my bf is like that too. I came home and told him I was going in for major surgery and he went "oh thats not good" and went back to playing his computer.

    I hope you can take heart that there are people in the virtual world that would be the arms or the shoulder for you to come to.
    >:D<
  • I don't think I'll be able to read many posts in this topic area... Kind of teary eyed :( I'm really sorry that you have to go through that. Being alone when you need someone the most has to be the worst feeling ever. I can't imagine what that must be like. Sounds pretty selfish of him, to me. He should have totally gone with you and not left your side. I hope it's just a phase he's going through and realizes the pain he is causing you, sooner rather than later... And apologizes sincerely. It won't erase the way he's made you feel, but at least if he acknowledged his mistakes in this area, it may be comforting in some ways. I really hope things change for you.
  • Sorry this has happened to you. I don't understand ppl like that. (i know a few myself) You start talking about pain, not complaining just talking, and they get a blank stare or just completely leave.?.?.? Anyway, here is a letter which you might relate to: (I didn't write it, btw)

    A Letter to Normals from a Person With Chronic Pain

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

    Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    Please repeat the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

    Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

    Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

    In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
  • for posting the letter Ben....you rock.... =D>
  • It was "stickyed" (sp) on the old site. I y'all need a copy to sticky, let me know. Or, I guess you could copy and paste.
  • I know this sounds cold, but have you tried just telling him that you want to sit down and have a talk. Then expressed your concerns and frustrations and how it upset you to be alone in the hospital?
  • I wish I could get my spouse to read things like that....but it's like if he does anything I suggest, then I'm the winner....??? I don't get it. So I have just learned to deal with things on my own.
    Thanks for taking the time to post it.
    Sagehen
  • Yeah, I've tried talking, tried painting a picture, tried the how would you want to be treated...etc....for a very long time. When I was scheduled for my surgery in May, I automatically started trying to figure out how I would get to the hospital 200 miles away...I thought I would ask my brother to take me,but my husband told me my brother would be out of town at that time...then he said "What are you going to do?" I'm so used to that crap that I started calling friends to see if they could take me! It took one of them saying to me "You mean Steve isn't going to take you?" to make me say "what the hell?"
    I told him he would have to take me, and he did, but he left right after the surgery,so I was there by myself for 4 days! BooHoo, I know, but I think it should have been different. Sagehen
  • I have a 5 year old too....lots of fun, and lots of work!
    She starts kindergarten tomorrow!
    But she thinks she can drive a car! Funny girl!
    Thanks for the post...
    Sagehen
  • Thanks priestess,
    It is so helpful to be able to come on this sight and read what everybody else is going through.And how they're coping.
    My friends seem to have disappeared this summer. You know, "call me if you need anything" and then you leave them a message and they never return your call. ???
    So for now you guys are it for me. And by the way...you do a fine job on here!
    Thanks for being here!
    Sagehen
  • are most welcome and please just call me Miki. I know what is like for people to disappear , heck , I think we all do but you will find that it is different here. The member community here is truly amazing and so very supportive. Btw , thank you for the generous compliment. Remember , PM me anytime that you need to.....Miki
  • Gosh, I'm really sorry that you have been going through this. You always think it will be different or things will change, but it seems to stay the same. I TOTALLY understand! My advice to you is to find someone that you know loves you and draw strength from them when you need it. Also, draw from your inner strength... you know it's in there, you just have to dig down in there and pull it out! You have it, you have made it this long. YOU CAN DO IT!
  • Sagehen,
    I would like for you to know that I empathise with you because what you describe is similar to my life in many ways. Not only do we have to "deal" with chronic pain but we do this primarily on our own even though we are married with children. Many times I feel like a single parent and must juggle everything except being the breadwinner. I find that my faith is what carries me and fills in the gaps. But I must say that I wish that I had a better relationship with my husband and I hope that it will get better. Currently I am trying to arrange a SCS trial but not being able to drive requires me to make him do it and he will make the trip miserable and he definately doesn't know how to be or say anything helpful. Yes I too feel "invisible" because I do not work outside the home I feel very isolated too, this site allows me to say things that I can't say to many around me because everyone reading these posts knows how it feels to be in constant pain and the challenges that it presents. Hang in there with me :H
    Saima
  • It's the S word....selfish, I used to wonder how couples that had been together for 20,30 years could end up divorced.It's because you have time to just let things go...it'll get better with time, he'll mature,he won't do it again, it's not that big a deal,, whatever....and then you realize that no....this person just doesn't care for you. And as long as you LET it continue, it will! It's an unhealthy way to live...but I have no choice at the moment.I'm getting something out of this ...I'm being supported financially. But it really does make me sad to think I've got my entire adult life invested in this,and I don't really think it was a very good investment!
    Take care of you...
    Sagehen
  • As I read back over the post I got to feeling like maybe it might be understood the wrong way, like I was encouraging you to step out of your marriage to find your comfort. I totally didn't mean that at all. What I meant was to go to a family member or close friend to lean on when you need a little extra support. I would never suggest leaving a spouse or looking for other "HELP" to you. I expect that that is your business not mine. So, JUST the support from a friend or family member, if needed.
    I hope that cleared it up! 8}
  • Sagehen, I am so sorry that you are feeling so much pain(emotionally). It is bad enough to have to go through surgery and deal with the fears and pain and emotion that go with that, but to have someone who is supposed to love you not be there for you is just not fair. You are completely entitled to BooHoo (I want to for you). Walking out of the room while you are talking is the worst, its not like you can just jump up and follow him. My mother did that to me shut the door too. You just want to say "hey thanks for kicking me while I'm down". Now is a good time to rely on friends that do care and focus on everything positive. All the negative is bad for the healing process.I am hoping you heal quickly and won't need to depend on him.
  • sagehen- I hope you are doing OK. I understand so much of what you say. But you are not invisible as you made yourself visible to other people suffering and in the same boat. I am sorry that you had to experience such a feeling but you are still a person of great value and worth..no matter what as illness is something that happens to you and is not you.. ...Take care of yourself... :))) jade
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