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Do you ever..... Do you ever.....

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Unread 05-23-2003, 04:34 PM
Do you ever.....

feel like everyone is soooooo tired of hearing you say you are in pain......question whether anyone actually believes the pain is real anymore......make a consious effort to say that nothing is wrong even when some definitely is wrong because of the way you think people are responding to the truth?????

I guess I'm "in a mood" lately, but I have just got to the point of why bother?! I mowed the entire lawn again....on the rider and am hurting like heck and know it will be even worse tomorrow. But....I'm all smiles and forging forward saying "Oh, I'm fine" because I don't think anyone really cares that I can't do something as simple as mowing the lawn w/o being in the bed in pain the entire next day.

Ok...I'm done now....just knew you ladies would understand that feeling.
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Unread 05-23-2003, 05:02 PM
Do you ever.....

We care and we understand. I know exactly how much of a temptation it is to not want to let anyone know how badly you are feeling. Still, remember that those who love you will be there, no matter what. That includes us, but I am that also means some people who are physically present in your life as well.

Unread 05-23-2003, 08:08 PM
Do you ever.....

I understand exactly how you feel. I rarely ever tell anyone how I am feeling. Usually those closest to me can tell when I am hurting by how I am acting. I either get really crabby, really quiet, or very tearful. With my kids and my DH I only complain when it is unbearable and I need help with the three year old twins. My mom always knows when I am in pain. She says my tone of voice and mood change dramatically.
I grew up with a mother who ALWAYS had some medical complaint. So after hearing about her health every day for my entire life I learned that people don't really want to hear about it. So unless they ask or they need to know, I don't say anything. Plus like you I sometimes think they won't believe me. Sometimes I even doubt myself, like I think maybe I am making a bigger deal out of it than it really is. But I do feel vindicated that usually when it gets bad enough there is something very wrong and it is usually proven by some test or surgery. This last bout I had is a perfect example of it. I kept hurting more and more and I thought I was just becoming tolerant to my pain meds as they just weren't working, but when I had the tests done and then the surgery both showed severe adhesions on the left side, the very side that hurt so much. So now I know that it wasn't a tolerance it really was increased pain.

I get like that after grocery shopping. I do pretty well all day but if I have to go grocery shopping I am a BEAR when I get home and have to go to bed. I guess living with this chronic pain is something that not only we have to learn to deal with, but our families and friends too.

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Unread 05-24-2003, 08:02 AM
Do you ever.....

Mostly when people say 'how are you?' it's just a form of greeting and not really a question about how you really are. I don't think this means they don't care. I've gotten so that I say 'I'm OK' rather than 'I'm fine' because I think it makes a distinction. And I don't want to tell everybody exactly how I feel anymore, although I used to because it was so much a part of my life. Now, of course the chronic pain is still a part of my life, but I've decided I want to live my life as normally as possible and talking about everything that's wrong with me isn't normal. Other people have problems that they don't talk about, too.

I'm dealing with Pain Management doctor right now and having quite a bit of breakthrough pain still. One of the things I'm learning is not to do things that end up with me having pain that gets out of control. So, for example, if I were mowing the lawn and it laid me up for two days, I would mow part of the lawn and save the rest for another day or days. I want to have my pain be as manageable as possible. I tidied the house yesterday but I skipped the urge to do the floors. That will happen another time. And probably not all at once, even though it's a small house.

I don't at all mean to diminish your experience. I know exactly what you're talking about. Being in pain is something that makes us feel so alone. Nobody can really know what it's like to feel our pain. Some people are more supportive and understanding but dealing with the pain is still something we have to do ourselves.

I'm distracted right now and maybe have been clumsy in getting my point across. I hope you understand that my intention is to give constructive suggestions and not to criticize what you are doing or minimize your experience.
Unread 05-24-2003, 08:34 AM
want to add on

hi, my husband "said to me a few weeks ago cant there be just one day where you dont talk about your health can i have just one day thats all i am asking". that hurt me so bad. he has been their for me but he is supposed to be my best friend (i dont have anymore girlfriends). i thought when you share your life with someone you are their always to listen. i listen 24-7 to him whether i want to or not. i never ever complain about his on going things. but that hurt me. so since then i just smile say i am fine. i dont talk about my health any more to him.i talk to you girls and who ever talks back to me on the site and my mom. god love my mother she has never ever abandoned me.i wish i could have met someone like her in my life (male wise). i love my husband dearly..but that stung big time. i just went outside on my backk porch and cried but never let him know i i know how you all feel...angel
Unread 05-24-2003, 09:20 AM
Do you ever.....

I so understand what you are saying (((Angel)))!! It was a similar comment from DBF that prompted me to post in the first place. I'm not talking about an aquaintance asking "How are you?" in casual conversation. I'm talking about my kids, DBF, my mom and brothers. These are people that I am there for UNCONDITIONALLY and it really hurts when they act in a way or say things that minimize what I am going through.

I know that only I know what it feels like to live with my pain and that I have to be the one to do things to keep it controllable. However, there are situations in which you don't have the ability to opt out.

With my current situation being what it is I suppose I'm just grouchy and frustrated.
Unread 05-24-2003, 10:03 AM
Do you ever.....

I've realized that as time passes through out "complications" most people forget to realize what we've been through. They can't SEE our pain <not a broken leg> so it's like "get over it"

Well I know exactly how you feel about the hurt from a husband. He was SO there for me and then last week left me to go clear across the country to a seminar <which he didn't have to go to and the company ONLY decided to go ONCE they realized it was free...and I have to add, it's a family run business>

I pleaded with him saying I needed him here but he chose to go and it hurt so badly and I don't know how long it will take me to get over the hurt.

So I can relate.

Unread 05-24-2003, 10:53 AM
Do you ever.....

Dear Sisters,

I just wanted to say that I can totally relate to this thread. I have many times not said a word to the people closest to me about the pain I'm in...But I can say that when I do that I feel worse inside.

I am known to hide my pain...and I do have my reasons for doing that. My Mum is one. If I tell her how I am honestly feeling...we usually end up in a confrontation....with her saying something like "you're not doing enough about this etc." Yeah right...I've only been to about 50 differebt dr's in the past year etc. But somehow I always feel worse when I open up to her. So I leave things light and fluffy...I know she loves me, and it is breaking her heart to see me in pain...but I just cannot allow myself to open up to her, just to feel more pain - the emotional kind that leaves me second guessing myself.

As a rule, my DH has been great over the past few years. I do try hard on his days off to do things with him...and rest on the days he works (luckily he works 12-16 hour overnight shifts, and sleeps through the I can rest/rest/rest!) But he has been known to make the odd comment that really hurts. He says he's joking...but I know better.

I don't really have much to add here...just wanted to share with you. I say, do and say what feels right for YOU!

((vbjacks5)) I went through a phase a while back when I did do a lot around the house. I helped DH do some painting...then the clean-up afterwards. I spent a whole day on my knees washing the baseboards, and floors because we were getting an area rug. I spent the next week or more in so much pain (with many tears). I realized (yet again) that I simply cannot do these things anymore. I didn't do them to proove anything to anyone...I did them because I was sick and tired of not being able to do them - do you know what I mean? I guess a kind of self torture if you will. I wish we could afford a cleaning person...but we just cannot right now. So, I let things get messy....but it really bugs me.

It's true - many of us have 'hidden disabilities.' I've had many people say to me "Well you certainly don't look sick..." And I think those comments hurt the most. I almost feel like I have to justify myself and my illnesses.

Sorry to go on and on here....I guess I needed to get that out. Thanks for posting this...although I'm sorry you are hurting. Please know that we will never judge you or your pain. We you and we will listen.....

xo Jude
Unread 05-24-2003, 09:06 PM
Do you ever.....

I'm right there with you! I have given up too! I pretty much only tell people when I actually have to have testing done because then maybe they'll take it seriously if the doctor is taking it seriously enough to do testing. I am so tired of people changing the subject or tuning me out when I talk about my pain. I get the feeling people think I am looking for attention. I'm really not, but I think there's nothing wrong with wanting a little attention for these things anyway! What I want is for someone to listen to me vent about my pain, someone to show they care(what a difference that makes!), some compassion! Most people just don't know how to respond! I think if I had a broken leg, people would be very compassionate because they'd have visual evidence that I am in pain, but they can't see my bladder, my ovaries, my stomach or my esophagus and know that I am in pain every single day! It stinks! The people that really care are so rare! It makes me a more caring person though. I am more compassionate towards people because of this.
Unread 05-25-2003, 08:25 PM
Do you ever.....

{{{vbjackks}}} and {{{sisters}}}
I do understand where you are coming from. However, if others don't know how you're feeling they can't help. I used to be the same way, just s*** it up and keep on going. FINALLY about a year ago I decided I could not go on this way anymore and there is NOTHING wrong with admitting that you are in pain. If I'm hurting the people around me are going to know. Do I scream it from a mountain top??? No. But I will lay down, take a pain pill and try and take care of ME!!! Yes, there still are days where I may have to grit my teeth, but I do also take some days to take care of ME.

Big s for all my sisters. This Road sure isn't easy and there isn't a manual or instruction book for us to follow. All we can do is survive the best we can my friends.

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