How do you deal with wanting to scream? When I start to hurt, but before I actually realize that's the problem...I always seem so edgy. Justin says he's always noticed it, and he can tell when I'm going to start hurting, even before I know it. Sometimes I just want to stand up and (excuse me) bitch out everyone around me, and whine about everything in creation. I don't mean to. I'm sure fatigue has a big part in that, especially with the hours that I work, but it just seems extreme. I have my video games, and I love them and they always are a great stress relief. But I'm not so sure this is stress. I kind of wonder if it's like....I gripe about things a head of when they happen, or right when they happen, to get them fixed. The sooner their fixed, the less I have to go out of my way to do things that might wear me out, or make me hurt. Agh. Does that make ANY sense to ANYONE? Or am I just crazy. I guess the biggest thing for me is at work - when people screw something up repeatedly that I have to go out of my way to fix, I gripe a lot. And, saddly, we have some real "winners" working here. I know thats common, but Justin says I'm more whiney about it than anyone. I really think some of it is subconcious.
Is anyone else really picky about how things are done, either at home or at work so that they don't have to do things that wear them out or make them hurt? How would you even explain that to people you work with, without them thinking your're just lazy. These are all new thoughts for me, so sorry if this is a little unclear. I've been turning it over in my head all afternoon, and I just had to get it out there. Thanks guys :)
Katie
Hi Katie,
I think I'm more sensitive about wanting things done a certain way. I'm definitely more 'edgy'. I quit work a few months ago but I did work with some people who just didn't care about the quality of work they did. I had absolutely no tolerance, no patience for them. It was much harder to be nice. And I've always been nice. I tend to be bitchy more often and I don't like it. I have to concentrate on 'thinking before I speak' as my mom used to tell me.
Katie,
If you are taking prednisone, it tends to make you more edgy. When I am about to flare, I don't get irritable, I get very weepy. You don't even have to say anything to me, I just am weepy.
It's a bit hard to adjust to especially if you are used to being in control of your emotions. Before RA, I rarely even cried about anything. But on bad days, my emotions are right there. I have even snapped at a coworker (who actually did deserve it) and my boss once. Scared the hell out of them because it was so non-typical of me. I had to explain and apologize that I was in bad shape that day. They forgave and forgot.
My kids were teenagers when I first got RA. And, teenagers can drive any parent nuts. I snapped at them quite a bit in the beginning. It was the combination of me being really sick, really scared and their being really selfish. But I don't believe in acting that way so we developed a system where I just tell them how I'm feeling and that I might be more emotional than normal. It is not about them, it's about how I am feeling.
This helps. One, they know it's not permanent and probably I just need a nap. Two, it isn't as destructive. Because I've made them aware, I've also made myself aware and I back off and hold off on those emotions.
Even at work, I would let them know if it was a bad day and casually say, I might be a bit more emotional today. That helped even things out.
Probably why it is so severe for you right now is the fact that you are used to controlling things in your life and RA won't allow that. You are going to have many ups and downs. You will be able to do things and not do things. This is when you will have to learn to let things go.
Things in your life cannot be perfect any more. They can be their best, but not perfect. Letting go sounds harsh when you are used to controlling how things are done. But it can be a real blessing.
You have to step back and let people make mistakes and do their tasks even if they don't do them near as well as you can. It will help them grow. Praise what they do well. Gently instruct where they need improvement.
You are not going to survive this by hanging tightly on to everything. Things break. People fail you. Your own body is set against you. If you keep trying to control it, stop it from happening, you are just going to keep hurting yourself more.
Letting go is an art. And for those of us so used to running our worlds, it is a hard art to master.
:( Deanna.....I've had JRA all my life. This isn't a new behavior for me. It comes and goes. I just only now noticed it. I'm not on any meds right now, as I don't have insurance. So I guess it's just stress. I would tell my co-workers I'm having a bad day, but that would be almost every day...and when I DO they just look at me funny. Even though I've explained it already. To make matters worse, my b/f has severe crohn's and is MUCH worse off that I am, MUCH more often than I am. And he keeps going. I know he shouldn't. *I* know he should take it easy, and just stop and relax. But he won't. Unless he's REALLY bad off. Last night he worked his whole shift while taking breaks to go puke. I feel like such a whiney BABY if I don't do what needs to be done. And with my pain being new (within the past 4 months it's started again) he's NEVER been around me like this. When we got together, I was in remission. So sometimes he just doesn't get it. And no one at work gets it. Well, one girl does. But I don't get to work with her. Anyway. I was just kinda venting. Just wanted to hear if I was the only one who snaps or not. Anywho. Thanks for actually replying :) Any answer is better than no answer!
Katie
Katie, pain will make you lose it. My daughter also has extreme pain and that makes living with mine much harder sometimes. Crohns is horrible. But so is RA. I think if you can get your doctors to find a way to get this pain under control, then you might feel calmer.
You are not a whiney BABY. You hurt. It doesn't matter if no one else gets that. It is a fact. Overtime, people do accept it even if they don't really comprehend it. When I was working, I would be in so much pain and my friends had no real point of reference for understanding. I don't think most people do unless they have lived through it themselves.
There is nothing wrong about feeling angry about it. It is totally unfair. What I would advise is to try and find out what is the biggest source of your pain. We all have pain. But it is important to know the cause especially in your case where it has been a lifelong battle. For instance, my shoulder hurts really bad. I should have pushed them for xrays earlier. Now, there is physical damage. If I had pushed them earlier, it could have been avoided. But even knowing the reason it hurts helps me deal with it.
Get back with the doctor and see what can be done to improve your situation. The same thing with your boyfriend. His illness is not under control either.
You both might consider adding a pain specialist to your treatment.
I think it is so difficult to be so young and obviously very sick. The fact that both are you are struggling against these serious conditions just makes it harder. People expect young people to be 100% healthy and they can say really unkind and uncaring things. My daughter faces it all the time.
Hang in there and keep looking for answers. Vent often. People here do know what you are going through. I'm sure a lot of people do have the same reactions you do but it's hard to admit it.
I hope both of you feel better. Don't give up. Answers are waiting. Just dig harder.
Thank you Deanna :) You're so sweet. Right now we're in a battle with social security disability for my b/f. He was entitied to it at 16 when he was first diagnosed. He wasn't ever supposed to take a job or work. But he his, because somehow he fell through the cracks. I will be elligable for insuance in Feb 07. (my job requires you be here for a year first) But even then I'm not sure my JRA will be covered. I'm also looking to go back to school this Jan. If I can. :( I still have to get with the financial advisors on it. So much to try and do in so little time!! I don't want to look back on my life and go "gee, at 23 I really should have been doing ____ but I just hurt too bad." :/ Meh. Thanks :)Hi, Katie, you sure have it tough and I feel for you. Did you ever get round to trying a splint for the hand and elbow pain? Mine is still working fine. Cheers, DesNo! I didn't. Money is so very tight lately. And Justin was sneaking bits away to buy my birthday presents with! Haha he means so well. But he's a guy...what can I say! And getting to Albertsons is a bit of a task. We're night owls, with him working graveyard and me always working 3-11, we stay up all night. In fact, getting to ANY store is hard for us. And there's only ONE in our area to top it off! The plan is still there, I swear. Maybe next payday I can swing it. I added a couple of pillows at night, which I always end up wrapping myself around, and that seems to help. At the very least, I wrap my arms around them, and then they don't get bent as far. Works for now...ya always gotta improvise with RA, huh??? :) Thanks for the inquirey :)
I try not to think of it as "having it tough" My life is just...............adventerous(sp?)....Hah. I'm getting into a better and better mood as the night goes on...2 days off at home with my sweetheart and my baby kitten. Doesn't get any better than that! TTYL!