Am I the only one...(I know I am not), who constantly feels a failure from RA's presence in my life?
I mean here I am a very intelligent, competent woman...capable of organizing half the universe and people now look at me as if I am a intellectually disabled child!
I am so over being told I should have done this already...or I need to catch up with...or how goddamn inefficient I am because I can't get everything I need to done...and the classic, "Why have I not done....?"
"BECAUSE THERE IS ONLY ONE OF ME, YOU IDIOTS!!!! ONE OF ME WITH A CHRONIC DISEASE AND PARENTING A CHILD WITHOUT HELP!!!"
THAT'S WHY!
Yes, I am a tad frustrated with all the 'normals' who want to remind me of how inefficient, inadequate and not up to scratch I am. The last few weeks feels like it has been a constant barrage of it.
And regardless of being emotionally strong, when you have had 'those looks' for the 60th time in 2 days...one starts to feel a tad depressed about how inefficient one is.
I am to the point where I may let the next 'normal' seriously have my opinion...loudly.
See, the truth is I am not inefficient at all. If I wasn't a great organizer and manager, I could not survive this disease parenting on my own. Anyone less efficient would end up bottoming out much quicker than I do.
But although I know that is really the truth...'the looks' wear me down and I do start to feel like I can never, ever be enough. Never, ever get it right.
youre not the only one cordelia. I am married with 3 fantastic kids . 21,18 and 14 and two gorgeous grandkids. I have struggled so much over the last 4 years to be as normal as I can . 4 years ago i had a massive asthma attack which ended up me being in an induced coma for ten days . when i came to i was paralised completely .eyes ears everything . eventually after a lot of physio i was able to walk with a frame . every thing that i was able to eventually do for myself was a bonus as for nearly a year my partner and kids had to do everything for me. even wipe my bum. feed me , blow my nose etc how humiliating. well to get to the point the pain all the time was extreme and my doc just kept saying muscle weakness . finally he sent me to a rheumatologist and i was started on methotrexate. and i knew i wasnt crazy. so as you can see we are not failures in fact the opposite to be able to raise your child alone and suffer this debilitating disease in my eyes makes us amazing. I have suffered depression from all of this , but I know life has its ups and downs but cherish the little things that mean a lot to you and realise that unless someone walks in your shoes they cant possibly know how you feel well most of us here DO KNOW HOW YOU FEEL so dont feel alone just feel free to vent away anytime you like. Ally &n bsp; Hi, Insecurity, is part of the 'depression' , fatigue factor tht goes along with this yukky stuff. We we need to make important decisions and we don't feel 'well' it is so much harder. Our strength is zapped, we feel crappy....no wonder we are insecure. It is part of the yuk. (the drugs affect our minds the pain interferes with logical thinking, we get beaten down with all the variables' ...no wonder we feel the way we do!!Lynda
Ahhh yes the "normals". They just don't get it or come close to understanding what it's like to live with a chronic illness. They look, laugh and make judements on something they will never understand. They are lucky they will never know what it's like and although sometimes I find myself wishing they could experience it for just a day or two....I would never wish it on any of them for a lifetime. It DOES take a very strong person to live with RA and it's hard...damn hard. You just keep doing what you have to do and try not to worry about what you can't. We may not be your neighbor next door or your friend across town but we do understand what you're going through and we are always here whenever you need us. Hang in there and try not to let anyone get you down.
Peace & Love...Neasy
Sounds to me like you are surrounded by a bunch of uncaring idiots who love downgrading you to boost their own self esteem. Are these people who love you or are they people who are supposed to be friends. Whoever they are, remove them from your surroundings. I know, it's easier said than done, but gosh how much can anyone take. I guess you can tell that I am really disgusted with these people whoever they are.My first post - although I have been reading quite bit since I was diagnosed this past January. Its been a rough year - very rough year - and reading people's experiences has helped.
I can certainly sympathize. This is so much harder than anything I could have ever imagined. I spend most every night not sleeping and often crying from the pain. Every week there seems to be a new joint affected. Every week it gets worse. And I still manage to work my 50 to 60 hour a week job, and wonder why no one around me understands the tremendous effort it takes to simply walk up the stairs to my office every morning.
One thing that does help me a lot is trying not to make this an "us versus them" thing. The "Normals", or those without RA, against those of us with it. Thinking "they can never understand", they just don't get it, they aren't helping me when I need it.
Instead, I try and realize that no one is really normal. We all have "something" that sets us apart and makes life a challenge. I have never lost a spouse in a war, I have never lost a home in a fire, I have never had to file bankruptcy, I have never lost a child, and on and on. They can all certainly say that I can never understand the struggles they have - and they might be right.
So, instead of yelling, or cursing because they don't "get it", I try to educate quietly when an opportunity arises. And realizing that not everyone will always understand everything that is affecting me. Just as I will never completely understand what everyone else is going through. They aren't all idiots or uncaring, they may just have their own concerns.
At least - that's what helps me.
Good Luck Cordelia - you have people here that clearly understand and can sympathize.
Sorry to hear all that Cordelia. There are good posts here, I am glad I read them. I am very glad most of my kids were grown and in college or out on their own already when I got this disease.Cordelia, I don't feel like a failure, I just feel plain guilty that I am not able to do the things I used to. I was the "do it all" type of mom.
Now I tell myself that I am preparing my boys for life. It's their turn to do it all while they are still at home and I can guide them. Yes I still feel guilty, but not a whole lot I can do about it. They seem ok with the added chores, but they also have added freedoms...
I have never had anyone act in a way that made me think they think I am inadequate. Most people I know want to do things for me that I am capable of doing and I appreciate that, although it makes me a bit uncomfortable. I know they do it because they care about me and want to help. I don't work in an office or with the public though. It's just me and a bunch of exotic animals. If I see any humans at work, it's my bro and his wife, and they're cool. I have to say that if RA has brought about anything good, it's that I can see now how uncommonly blessed I am by the people in my life. I truely didn't realize how many people care about me before I was in need. Thanks everyone for your support and input.Cordelia,
I get mad at judgemental people too, but I try to remember that they are way more "disabled" than I will ever be. When they are judgemental and insensitive they are the ones that look bad, not the person they are criticizing. I am sometimes the one who is most judgemental of me. I expect to be able to do everything I could before, esp since no one would know I am sick by looking at me. I think you are amazing to be caring for your daughter alone and pushing forward through such difficult illnesses. Sounds like you have some loving friends. Hang unto them and just put the others out of your mind. There will always be unkind people in the world and the best thing is to ignore them as much as possible. I think you are very strong and brave-that's my opinion of you!
Laker
Dear Cordelia, you have so much to offer. Your devotion to your Neve is incredable!, love ya for that, ya know what.....it is such a complicated disease, and we don't look sick, so people can't possibly 'see' our pain and suffering. Who can understand a crooked finger, a bent knee that doesn't want to unbend, toes that burn, the bottoms of our feet or the tops of our arms. This is such a weird disease we hardly understand it ourselves. I'm so glad your parents understand and support you but what can you do about your brother? I'm sure it hurts that he doesn't get it. Is he younger? or older? (My brother hasn't really said anything to me directly, he says, "well you know our grandmother died a horrible death from RA' WELL YA, I know that!! He doesn't say how does it affect you? Where does it hurt? (he had a lot to say about my heart valve operation....but nothing about rA. Strange isn't it?
Some people, men especially can't face stuff like this head on.
I wish you could get help with your house, your little one and your everyday demands. I know how hard it is to move with this stuff hurting 'every part of our bodies' , It takes so long to do the simplest things. YOu deserve so much credit for doing what you do....good luck with the new medication, and getting past the tooth infection.
Remember we are always here for you, some of us (I) almost never sleep.
Take care, Lynda
Thanks Laker, I believe I am strong and brave too. My daughter is strong and brave too. Yeah, I have some good friends. One of them bugged me to get on some forums because she believed I had something to offer people. My friends believe I am strong and brave too. They are the only kind of friends I have, lol.