I find that my family says all I talk about is my pain and what I had to do today to get by. I can't work so I don't have to many friends to talk to during the day. Mostly I just post on here and other boards and that is my communication with other people. My husband works long hours and so I don't get to see him much. My daughter whom from the day I got sick doesn't think I am sick says, that it is all I bring up in a conversation. I told her that is all my life is consumed by. But she still thinks I guess I am faking it. I would say that she is in denial but she has seen me at my worse and when I am doing good. So I have given up trying to talk to anyone here at home. I wait for them to bring something up to talk about. But then that makes me feel like I am not part of the family.
Does this happen to any of you? If so what to you do to make it better. I am not trying to be a baby about this. I just don't realize that I do it and I wondered if any of you have this same problem.
Have you looked into a support group at your local hospital for people with chronic pain?
If they don't have one, maybe you could form one. We understand each other, and if we have people we can share with, its easier to talk to family about other things. A local mental health facility very likely could give you a list of available groups, and wouldn't require that you be getting therapy.
Our local library has a list of all kinds of support groups, and contact numbers. You can meet with bereaved parents, people in chronic pain, cancer survivors, single parents, parents of kids with addictions, all kinds of people. You might also try the Y, local churches, and the bulletin boards at local universities/colleges.
Good luck.. I hate talking to some family members about what's going on, either they just don't get it, or they act far too sympathetic..
Hey RL, I feel the same way, especially when I am in a lot of pain. I am newly married and I know my husband wants to be there for me but it is hard to respond to someone in pain-if you don't know how it feels. That is why this board has been such a blessing for me. You have to get it out because it does seem to consume you. My hubby asked me what he could do. I said just check in with me everyday and ask me how I am doing and help me to feel like you really care how I am doing. He does that every day now and it really makes a difference! He stops everything and really pays attention, looks into my eyes and it works. Now I don't feel like I need to talk about it to him so much. I think part of it is you need to feel like your family cares and understands. Come here and vent all you want. This board has carried me through some very hard times. My daughter and most people's children (especially teenagers) are very self centered around parents. We create our little monsters by doting on them so.
Well, I come here mostly but am forturnate that I get alot of love and support from the people that are close to me.
I've found some friends don't call me much anymore, I guess I'm a bit of a downer and some I realize only did call when they wanted me to watch over their kids for them now that I don't feel up to it I never hear from them anymore.
Roxy, what you say about are kids is true for me too. I have 2 children an 18 year old girl and of course most of you know Oscar by now (my 12 year old boy) My daughter never asks how I'm doing or helps out in anyway. Her main concern is her friends and the phone. I think Oscar having JRA has made him very empathetic and helpful. He follows me around and if he sees I'm headed to pick up the dog's water dish he'll rush ahead and say "I'll do that for you mom". He also asked recently if I would teach him how to help with the laundry. Unfortunately he knows the pain and it is a worry to him that I have it too.
RLS2 we are here for you, so don't ever worry about coming here to vent. Vent away!! We care and understand and want to help you get through the roughs and toughs of the day to day stuff.
Love to all,
Just remember you are not ALONE! WE ON THE BOARD UNDERSTAND AND I UNDERSTAND! OUR FAMILY MEMBERS CAN'T UNDERSTAND, NOBODY CAN TILL THEY GO THRU IT! tOMORROW IS ANOTHER DAY! HOPE AND HUGS TO YOU!! We all understand what you're going through. I'm one of the lucky ones; I have a very loving and caring family but I still understand your feelings. This is the first time I've really been sick since my recent marriage in November. Yes, aches and pains...some worse than others, but this recent illness has really shown me what my family is all about. Especially my husband. I think I must be the luckiest girl in the entire world. He is just precious. He almost smoothers me at times bless his heart. Never fails, as soon as I get to sleep the phone will ring...or he'll be standing beside my bed checking on me. He's a worry wart; but I adore him. I'm going into week two of this illness and although I'm back at work (against his advice) I still don't feel like doing anything but getting back in my bed as soon as I get home. I'm so stressed over it. I feel so guilty. This weekend all of our children will be with their other parents and that's usually our romantic time. The entire weekend. I'm afraid this weekend is just going to be another repeat of last weekend. Me...sick in bed ALL WEEKEND
I sure hope not. I called my doctor to tell them I didn't think the antibiotic was working very well. Hopefully they'll switch me to something stronger. I almost think it's getting worse. Enough of my whinning for now. Back to work. Hang in there girls....we've got each other!! Good for you Lovie and if you are the luckiest girl in the world then I must be the luckiest guy. My wife asks many times a day how I'm doing, what hurts, did I take my meds, am I okay. I hate to say it but her concern may be a little overwhelming sometimes but doesn't go unappreciated. I do know what it's like to have family members not understand the seriousness of this disease or the damage it can do. My very brother did not believe I was ill at all until I was being wheeled into the operating room for my first hip replacement surgery. Believe me, his eyes were finally opened. Now that he is facing a chronic illness himself, I have become his biggest supporter. My sis-in-law is also battling a debilitating disease herself. A 40 yr old mother of the 3 children, she is having a very hard time of it. Of course I'm the only one in the family who has experience with this sort of thing, so I try be supportive of her and relate to other family members what she's going through. I get downright furious when she is left out of family outings because "we just don't know how she'll feel today." Anyway, I hope no one has to be wheeled into the operating room, before your supposed support system realizes, "hey, you really are sick!" Now that I have been under the knife four times due to RA, family, friends, co-workers usually ask how I'm doing. I consider my very lucky! Allen Allen I know what you mean by "overwhelming" but this is my second marriage and I've changed to the complete opposite of my first marriage. (Thank God!!!) I spent several years there where I was all alone also; except for my children half the time. So like you the concern does not go unappreciated. It's taken a little time for me to get use to someone fussing over me but I'll take that anyday compaired to the opposite. I always have this fear in the back of my mind though that he'll tire of it eventually. That keeps my complaints to a minimum I'll admit. I don't have to tell him when I'm not feeling well...him or the children either. They just know me, and know when I'm not well. I don't go around constantly complaining about my problems. Even I'd get tired of that!! If I complained everyday I didn't feel well I'd be in sorry shape to say the least. I kindof have the feeling that it's easier to want to be loving and kind to a sweet, kind person that rarely complains than a grumpy, nagging complaining constantly type of person. That's one way to keep it all in check for me. "Just because you are in pain...doesn't mean you have to be one" That's one of my favorite quotes. My Mother cut it out of a magazine for me once and I've never forgotten it. Lovie, I know what you mean about trying to keep the complaining to a minimum. But in my case, I never, ever complain about the pain, I guess because I've had this disease so long, I guess I assume everyone already knows I hurt. I got tired of hearing myself complain. If you want to hear me complain, come watch me try to open a can or, pick something small up off the floor. The utter frustration just sets me off. The pain, I can deal with, as I am a veteran at that. The frustration of not being able to do the things I used to could do......different story! The small things that healthy people take for granted! I hear ya!! When my parents started giving me the same gadgets they gave my grandmother (my favorite is the cordless electric can opener!!) I was slightly embarrashed until I realize how much easier those things made my life!! RA no doubt will make you grateful for the small stuff!! Hey bingethinker! I have the same problem. I can handle most of the pain I have...I mostly complain about the things I cannot due anymore; like walk from on end of the house to the other or even walk from my bedroom to the bathroom. I try to help my hubby to understand why I complain about not being able to do certain things and why I "get" attitude. But he just does not understand. He thinks if he can do it I should be able to do it as well. One day he will understand, I hope. Or at least act like he understand. I've found that NOBODY wants to hear about my pain or illness. Cept you guys, now. So I have trained myself to say nothing about it. And when someone asks, I reply with a short "doing ok". They all prefer that, I've noticed. Almost relieved that I spared them the details. LOL I think we should line up all these people who have trouble understanding, hit them in the knee with a baseball bat, tell them to immediately get up and walk around and then ask them how they feel. "On a scale of 1 to 10, how would you rate your pain?" How about lets line up the docs too for a little knee knocking also.
Oh well, just a thought. Allen That is great, Allen. And I hate that 1-10 pain scale. Everytime I go to Dr... same question. I answer the same each time ... "It's still a 15." I get no reply, just a blank look. Hey RLS I know its hard being around unsymathetic people. For me its hard for anyone to understand why Im in my 20's and walk like a lil ol' lady. I find that even when people ask me how Im doing I usually say fine or ok cuz I dont think they want to hear the truth about all my aches and pain for that day. You have a great group of listenters here tho. We all know that even with good support its hard to deal w/ the daily trials of Arthrits. You dont really understand a persons pain until you're in the same boat w/them. Vent here as much as you like. We dont mind! You can even scream if you need to
Also try to the extent that you can to find some activity that will take your mind off of your pain. Maybe you can volunteer, or take up a hobby that you enjoy. Find ways to help others in need. I know for me reminding myself that I can still do for other even w/ my own limitations helps me cope. Dont be afraid tho to express your feelings. And dont let anyone make you feel ashamed or guilty because you hurt. You dont have to apologize for your illness, your a human being and we all need a listening ear every now and then.
Take care Shawnie I once told my doc that I could be arrested on felony assault charges if I made him feel like do. He said an example would not be necessary!
Allen OMG!!! That was just tooo funny, bingethinker!!! Hulagirl - I know what ya mean about when people ask ya "How you doing?" I usually say "doing good" or "ok". Hubby never asks how I am so for a while there I was listing off everything that hurt or was stiff to him. Especially when he thought I should have done something or should do something. One day he told me just to tell him once of what was hurting and stiff and he would act like he cared. Yeah, he is mean. But I am doing the female population a favor lol. Shawnie - When I was a kid my mommy use to call me "little ol' lady from Pasadena" I think it was a song. I was born in Pasadena, CA and that is why she would call me that. She now knows how true it is...lol. She is 71 yrs old and gets around better then me. Hey Joonie, My mom is 65 and moves better than I do, even up and down stairs. As a matter of fact she's healthier than all of her children. Go figure.
Guess we lil ol' ladies hafta stick together!!!!!!!!you girls and guys really make me laugh...you are tooo funny!
You really keep me going!!! thanks! I know what ya mean about the apologizing. I was apologizing to hubby for everything, after I had andrew because I was able to tend to him for 3 months without help from hubby then one day bam. I could not hardly do anything for andrew and I would have to wake hubby up to help me with andrew at 3 am and 6 am or when ever andrew decided he was hungry again. Then I went into "Everything" was my fault. When actuality...none of it was my fault. I still do blame everything on myself, when hubby gets frustrated with bills and why our marriage is so crappy, and just everything and anything else. I just apologize and tell him it is all my fault. Then he will tell me it is not my fault. I know it is not my fault, I do not make bills...lol. Or even use the credit cards. They are in my name too but I have yet to swipe any of them...lol. Hubby loves to swipe the cards...lol. I have actually convinced myself that our debt, anything that went wrong, or why our marriage was crappy that it was all my fault and I would actually cry about it. And hubby would ask why I was crying this time and I would tell him it was all my fault. And he tells me no it is not my fault. It still does not make me feel any better. I just say ok it is not my fault, but I still cling to it is. I guess people with diseases think everything is their fualt because they are sick and cannot do anything to really help out with the problems that arise. I would have to say I have a great ,caring hubby that is always there(of course were side by side in a truck all day ha! ha!)But he is wonderful,always cares how I feel. My father-in -law is another story-can't get him to understand this is not just arthritis,a little ache and pain-THIS IS A DISEASE-can he get it through his head-there is pain every day.he thinks take an aspirin thats what I do and I'm fine-why do you go to the doctor.I give up with him.My mother-in -law knows exactly what it is-she had a cousin die at age 43yrs old that was all deformed from it(this was when she was younger)and not the meds that are out there now.They are not married-you can see why.i love my mother-in-law dearly.I don't have my mother in my life-my hubby kids me and says I stoled his mom,cause she always sides with me,Sherry anyone else get this? hate it when people sit and start listing off possible causes for RA..... like trying to figure how I DID THIS TO MYSELF. As in something I ate, drank, or did. and then they say. "don't worry, they will find a cure soon and you'll be all better" as if the cure has a restore button to make all my joints and tissues back to undeformed. I just want to SLAP them! (not that I am able to). Ty for the vent And then we wonder why we are on anti-depressants! Well, noe for about 5 years now...but I am feeling like it is right around the corner....lol....when I go back to the doc again. It bites BIG NUTS!! Oh wait I cannot open my mouth that wide!!
I have been feeling so guilty because we have no insurance to cover medications, so my husband has to work 2 jobs. It makes me sad to know that if it weren't for me he would have this great life and would not have to suffer out in the heat. When he comes home at night he can barely move after sitting for awhile. It makes me cry and I just hate it. I want to go and get a job but I know I can't. I had one of the best jobs in our area for women. I was being payed alot of money there. And then one day all $%&^()*)* HIT THE FAN. And now I can't even stay up on my feet very long before my back gives out and my legs hurt like ^%&%(. So the guilt is something I really suffer with. I have a keeper of a husband and I tell him all the time how lucky I am to have such a wonderful husband. He works all day and then before he comes home at night. He will call to see if we or I need anything. I am so lucky. I thank God on a daily or even by every minute for him. I don't know where I would be if I didn't have him. I just wish I could give him something back in return for being so good to me. I have written to Oprah and some of the others about doing something nice for him. But nobody ever got back to me about it. So when I have a good day I try to cook something special for him. Like tonight I have made Swiss Steak, Potatoes and corn on the cob for him. I hope he gets home early so he can eat it before it gets to cold. I love him so much. So when I compain I sometimes forget what a sacrifice he makes for me. But it seems that is all I have to talk about when it comes to myself. I would never hit him with a ball bat but there are some I would like to. That was so funny. It even made me laugh. My daughter is the one that just don't get that her mom is disabled. And she is going to go to school to be a nurse. The other day she asked me how can people have so many illness all together. I told her that she it would probably be better to go and ask God about that one. She just don't get the mom has RA, OA, FIBRO, CHRONIC PAIN, etc. I don't know what to tell her. I give up on her! Anyway sorry about the babbleing. I'll go now. Have a good one! RL: You may want to remind your daughter that she too may come down with RA. My daughter also has it but it didn't show up until after she breastfed her second child. I believe noone really knows how truly bad it is until they have it. I too am lucky to have a very supportive family and we have to help our son-in-law to understand why my daughter is hurting and tired because she used to be so full of energy. Take care and you always have the support of everyone here. hate it when people sit and start listing off
You guys are cracking me up! Can I get in on the knee whacking??? I have a super supportive fiance, family and friends. It's all the people who give me that sideways glance at the supermarket and other public places when I pull into the handicap parking (with my official placard no less) who deserve the whack. Bahahahahaha Albear. Belly button piercing!!! That has to be the best one I've heard yet. Thanks for the laugh.
Ouch, Lisa. (re:your former best freind) I sure found out who were my real friends, or not. The NOT list don't bother to contact me at all now. Some claim its too upsetting and they don't know what to say. But when mulling this over, I realized they were the ones I was doing extra freebie things for (before I was forced to quit working). And now that I couldn't, I was no longer worth their precious time. So, no great loss. My real friends are wonderful. The only thing I asked of them was to stop the pity look. Can't stand that! I joke alot about RA with them, and seems to put them at ease.
Since then he's been very good about it and helps me out any way
possible. My mom passed away in 1989 and she also had RA along with a
rare blood disease. I don't talk to many people who don't know what
it's like to have RA, cuz they just don't understand. I have friends
who come over and critique my yard and home. If they could only walk a
mile in our shoes sometimes.
I also have a kid in college...I dread for the day he moves
away...don't know how I'll handle it, he's my only child. I'm lucky too
to have a good husband and son to help me out when needed. we all need
the support of our family and friends and the internet
possible
causes for RA..... like trying to figure how I DID THIS THIS TO MYSELF[/
B]
[/QUOTE]
I know EXACTLY what you mean! Some of the stupider ones I've heard are:
"you used to have your belly button pierced, right? Well obviously when
you
crossed that meridian line you disturbed the balance of your body and it
gave you arthritis" I had my belly button pierced six years ago and took it
out four years ago. Doesn't add up to me. And how about "oh, this
tiredness thing is all in your head. My grandma had arthritis in her knee
and she was never tired" and what about the heartbreaking "you used to
be so outgoing and happy, and now you're.... this" And my favourite:
"does it depress you to think you're going to wake up every day in pain?"
NOT UNTIL NOW BUTT HEAD!
I just don't talk to my family about it, I tell them major developments like
starting new medications and stuff and leave it at that, I live on the other
side of the country so I don't see them very often.
I had a best friend for about 20 years. More like the sister I never had. I remember the very day she told me I "was really pi$$ing her off" because I didn't want to do anything except sit at home and feel sorry for myself! She said I didn't go anywhere with her anymore. All I ever wanted to talk about was this arthritis and how it was affecting me and "my life". She said she had arthritis too (OA) and it was no different than what I had so quit complaining and get on with my life.
This was about 3 years after I was diagnosed. I was still in shock over the whole thing (RA diagnosis) and in extreme pain in every joint I had. She stomped out of my house and out of my life that day. I've seen her a few times since and things just won't ever be the same. It still breaks my heart just thinking about again.
My brother, (my only sibling) still thinks I'm faking it just for the disability. Had I known that SSDI was such a lucrative income , I would have faked this misery years ago! Silly me!
All I know now is, I can't control what everyone else thinks. Let them think what they want. I have a new best friend who says she loves me "all knobbly and wobbly" just as I am! She knows I can't do much but she calls me often just to see how I am and if I need anything. I feel very blessed to have her and to have found this board to share with others just like me!
feeling, and if it's bad there is no issue changing plans to accomadate me
and they never make a big deal out of it. Thank goodness for good friends!
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