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SoleSinger
08-14-2005, 12:45 AM
I have been diagnosed for about a month now... And I'm not coping well...
I am a very cynical person... Especially when it comes to therapy, or trusting people, or sharing ANYTHING about myself with ANYONE, bad enough strangers... In fact, there is only one person in the world that I feel I can tell everything to... And he's great about it...

But, he's suggested on MANY occaisons that I should look into a support group of some kind... But, the thing is (And I hope I don't offend anyone) I just don't get how it could possibly help me... I have a hard enough time telling anything to people I know... How is sharing such a HUGE thing with strangers going to help me when I am so uncomfortable with just the idea?

But, I am going insane... And, I know he can't be my sole support in this... It's not fair for me to expect him to be... Especially with something this big, that is affecting me so negatively... It's a lot for someone to handle... So, I know I need to do SOMETHING, for my sake, but also, for the sake of my friendship... Which is why I'm posting this... I figure baby steps, right? (I'm pretending I'm writing this to him so that I can at least get it down)

Maybe if I can actually post this and NOT erase it, I can actually post something that will be helpful and constructive...

So, my question is: What am I missing? Why is this such a GREAT thing? And am I the only one who's so cynical about this? Or rather, were any of you as skeptical as I am before you joined? And if so, what made you decide this was a good thing?

Okay, so that's 5 questions... I figure, even if they don't get answered, I just jumped outside my comfort zone, and that has to account for something, right?

But, even as I draw to the end of this, I'm debating whether or not to press the submit button...

hippimom2
08-14-2005, 06:01 AM
Welcome SoleSinger. You have probably taken the hardest step which was joining this forum and courageously and honestly telling your story. I lurked at this site for over a year before I joined, because actually joining would make the fact that I have lupus real.

I have to tell you that joining this forum has been one of the best things I have done. Even though I have a few good friends and family members that are supportive, no one can truly understand what it is like to have lupus. I think it is a very lonely disease. When you come to a forum like this it is such a relief to talk to others who completely relate to what you are going through and understand what it is like to have this disease.

I too sometimes feel like I am going crazy, but when I talk to others who are going through the same thing it makes me feel less crazy. Maybe if you start with finding support on online forums, you can eventually go to a live support group. I haven't taken that step myself yet, but am seriously considering it.

Congratulations on having the courage to post here. You will find lots of support, information and comfort. We will all understand if you're having a bad day and want to vent. Just know that everyone I have met at this site has been very helpful and supportive. Take care and I hope you continue to post here.

SoleSinger
08-14-2005, 06:15 AM
Thank you for replying!

I hear what you're saying about it being a lonely disease...

But, I have known someone for a few years now who has had Lupus almost her whole life, and she's quite a bit older than I am... And I can ask her questions and stuff... But, even around her I feel alone... Which I think is part of why I don't understand this... Because you'd THINK that she'd be the one I'd be able to talk to about this who would really be the best source of comfort... Wouldn't you?

That, and I feel like I shouldn't be so scared by this BECAUSE of her... I've known her for like five years, and in that time I did learn a lot about Lupus, because of her... And knowing that knowledge is power, having known about it already should have made it easier.... Shouldn't it?

Anyway, Thanks again for replying.

hatlady
08-14-2005, 10:40 AM
Hi SoleSinger;

It is hard to share sometimes. Sometimes a board like this is wonderful because of that little extra layer of distance between you and everyone else. Being e-friends can help give that layer of privacy - we share what we want. We CAN pour our hearts and minds out, without worry about being a bore to a friend - here we're all in this together and someone will lend a shoulder, an ear, and understanding. Someone will have been almost exactly where you are NOW, and have some sliver of wisdom to offer.

Like hippimom2, I've lurked a lot of places before actually starting to post. I've found I learned from others, and sometimes it helped more than reading the research and the stories on sites like Lupus.org.

Those are wonderful, but they're polished articles, theyr'e hard-to-read research. Here it is just us, people talking to people. Nothing to get in the way of what we're feeling. Sometimes it is easier to WRITE it than to SAY it.

I have talked to someone - an Employee Assistance Counselor - about my feelings as well. For me that worked. Only needed to hear her comments back on my feelings once or twice to start understanding what MY trigger points were. For me it is control. I'm no longer fully in control of my health or my life, this condition sometimes tells me life is precious, life is a chance we take every day. I can take steps to live as healthily as possible, but each morning can bring something new that I can't necessarily control. It was (and IS) a hard thing for me to accept.

Welcome here, SoleSinger, I hope you'll post often and become part of this community. And that when you're not posting, you're lurking and learning too - as we all do.

Hugs -

hatlady

hippimom2
08-14-2005, 10:47 AM
Even though a lot of people with lupus have common experiences the disease can affect each person differently both physically and emotionally. This person you know has had years to come to terms with her illness while your diagnosis is brand new. I think it's a very scary disease because you never know what it will do to your body. It's also a whole different ball game to know someone who is ill compared to having that illness yourself. Some people have mild forms of the disease and they can live fairly productive lives. I've read about others who have had terrible problems with organ involvement and become critically ill. There's just such an uncertainty about the disease. The bright side is that someday any of us could go into remission.

Even though we are all in different stages of our live and our disease, all of us have come here both for support and to support others. I doubt anything you say would sound too crazy. You will find people who care about you here and will try to help you through anything you are going through. Take care of yourself and stay in touch. Don't be too hard on yourself about how you are handling this.

Katalanta
08-14-2005, 10:49 AM
Hello SoleSinger,

Everybody experiences things differently. Your friend's experience with lupus is one thing cause it's happening to her. Your experience is another thing cause it's happening to YOU.

As for being cynical - most stories I've read about lupus were people going from doctor to doctor trying to make them see that something was really going wrong until they finally got a lupus diagnosis - whereas I've got a doctor who is jumping up and down trying to convince me I've got it and frankly, I don't want to believe him. I would prefer to have something immediately curable, thank you. Guess that's not really up to me, but I'm going to keep looking just in case.

In the meantime there's dishes to be done, pets to pamper and broken tile on the front stairway to fix.

Hope you get out of this support board anything and everything that you want to get out of it.

Kathleen

SoleSinger
08-14-2005, 05:32 PM
Thank you all for your responses...

Actually, I'm very surprised at how much your comments actually kinda made me WANT to start talking... Especially, going into all this with the attitude of "Yeah right, How's this gonna help?"... Especially, with as closed off as I am with people in general...

And the only problem about getting what I want out of this, is that I don't know what I want, because I don't know what I need... Which is part of why I feel like I'm going insane... How can I help myself if I don't know what I need TO help myself? But, I know I have to do something... I can't live like THIS anymore, that's for sure...

Kathleen, I totally get the not wanting it to be Lupus thing... The only thing about knowing that I have Lupus that has actually been GOOD for me, is the fact that now I KNOW what it is... I hate being in the dark...

So, maybe one of these days I'll get the gumption up to post something really real...

But, once I start I might not stop...



Is there a character max. on this? LOL

Mitch
08-14-2005, 06:22 PM
Hi SoleSinger,

Welcome, I have noticed the word "lonely" comes up a lot when referring to Lupus. I wish I could put my finger on it myself. I was dx'd in 2002, so it's obviously had time to sink in. I was dx's after only 2 dr. visits, so it's not like I was playing the "waiting game". I come to these sites often, mostly just to read posts, and will post only when I feel I can be of some assistance with a specific question. I did also join a support group in my area (in turn out to be right in my town, how could I NOT go?) I did, and I am glad I did. It's a small group, but it's diversified (young and old) and having something like this in common just creates an instant bond. You never have to be too personal. I still feel lonely for some reason too.
And just as you said, I don't KNOW what I want or need, but feel like something is missing. I seem to think it has to do with almost like an innocence lost. You suddenly realize that you don't know what's around the corner and I find I do look at things much differently now, and in a strange way, it really stinks. Sort of like finding out there's no Santa Claus. Christmas looses its "magic". I feel like life looses a little of it's "wonder" and knowing that makes me sad. I'm new here too, if you have stuff to get off your chest - it really is great therapy! The beginning is the hardest part - it will get better!

SoleSinger
08-14-2005, 06:41 PM
Thanks... Though I'm skeptical on the whole therapy thing in general, too... But, that's a different Oprah!

The loneliness is bothering me, yes... But, not as much as the pure unadulterated rage that I seem to be feeling all the time... On top of the loneliness and sadness and everything else (I feel like a complete basket case) But, the other stuff isn't as prominent or hard to deal with as how angry I am... No, I take that back, the fear somedays feels debilitating...

But, I've never had RAGE like this, where I literally feel like I HATE everything... EVERYTHING!!!!!!! And while I'm having trouble dealing with the rest of it, I don't even know how to APPROACH this...

And I scream and I cry and I vent and I whine... But, it never seems to dissipate... It just gets replaced with MORE... And I hate that, too...


Okay... Miss Cynical... How much did YOU just open up? Wow... Okay, maybe this WILL work... Maybe...


OH! BTW, What part of Jersey are you in? I have TONS of family out there, so I am always curious when I see NJ...

val
08-15-2005, 03:58 PM
Hi
I have a wonderful hubby who is so supportive but the sites allow me to off load without constantly burdening him. WE give we take we give our experiences and we gain others experiences. Message boards helped me to come to terms with it and eventually I started my own board and now I have started my own support group.
Hope to get to know you better.
Love Val

Mitch
08-15-2005, 08:17 PM
Hi SoleSinger,

I am in Northern NJ (Bergen County). I read what you said about having a lot of rage. I don't think I do, but I can tell you I do have less tolerance for petty stuff (ie.: I used to let people suck the life out of me and put up and shut up. Now, I have found ways to be bolder and get myself out of situations (as politely as possible). Not major stuff, just, the usual annoying neighbor that will talk till you're blue in the face. Normally, I would endure, now I will for a time, then excuse myself or the phone call I really am not in the mood for. I'll make an excuse to get off of sooner. I NEVER used to do that before. Now, I make myself matter. I would guess it would really help to keep letting it go and express what you feel. Sometimes that "lightbulb moment" shows up when you least expect it and it may become apparent why you feel enraged. If you have a good relationship w/your doc. maybe they've seen this reaction before, and can offer some good insight. I hope you can figure out what is causing you to feel this way. For me, half the battle is knowing the "what" and then you know how to proceed. Keep us posted and vent away!!!

Katalanta
08-16-2005, 06:37 AM
Oh I get the rage. I'm covered with bruises from pummeling this stupid body with my fists. And I get the fear because I've lost the faith I subconciously had that my body was working with me. It can't be if it's going to betray me this way. I didn't consent to rashes on my face or swollen joints or dizzy spells or weird shooting pains. Who knows what it's going to do next? My body is obviously not on track with the general program of a healthy middle-age and happy gardening retirement. And it's not like there's some foreign invader to blame. It's my own stupid body doing this to itself. That just ticks me off.

I know that it could be much worse and I know that I'll eventually get to a place where I barely think about it anymore because avoiding the sun and taking pills will have become normal to me. But it's not right now, and while I know that millions of people have more difficult things to deal with, this is mine and I believe I have the right to kick and scream and be entirely childish about it for a while. I'll find peace with it later, right now I'm indulging in an internal bit of thermonuclear war.

SoleSinger
08-16-2005, 07:49 AM
THANK YOU!!! This is ALL that I'm saying!! And I am SO TIRED of people telling me I need to "get over it" or "move on with my life"... If I FREAKING knew how to do THAT, do you THINK I'd be freaking out the way I am????? NOOOOOOOOOOOOOOOOOOO!!!!! Why not try to HELP me figure this out, not just sit there and tell me what I NEED to do, without any explaination of HOW?

And that makes me even ANGRIER...

And then, the fear, started out just being fear of the unknown... But, now all of a sudden, I have this overwhelming fear of death that I never had before... EVER. And the thing is, I KNOW that I can live a long time with this, and more than likely will... But, in my head, my time is short, and I haven't accomplished HALF of what I want... It doesn't make sense because I KNOW better... But, each day that passes, something else happens and scares me even more... Then of course, there's just the fear of not knowing if I can DO this for the rest of my life...

All I want is someone to tell me it's going to be okay... And no one will, because they don't REALLY know... And at the same time, if they did, I think I'd probably think "How do YOU know?" That is how bad my attitude is right now... About EVERYTHING!

And I feel defective because I'm not handling this better... I mean, there are people going through WAY worse things than I am... What right do I have to complain?

hippimom2
08-16-2005, 08:04 AM
SoleSinger, you said it all so perfectly. I think you and Katalanta described my feelings about having lupus perfectly. It's a totally different world and all the rules have changed. In fact I don't even know what the rules are or when they will change. At least we are all in this together and we have each other here to talk about the anger and the fear that goes along with having lupus.

SoleSinger
08-17-2005, 02:39 PM
Yeah... I think this support group/sharing thing may be okay... Hopefully, it will be an actual RELEASE and not just another place to vent while it all builds up replacing itself...

Thanks for helping me look at it differently...

Ouisch
08-19-2005, 09:05 PM
My own experience - I went to three different local meetings of the Lupus Foundation and came away unsatisfied. It was a matter of a group of people sitting and listening to a speaker. Everyone there had different symptoms and manifestations of the disease, and there was no time in the program to actually sit as a group and talk to each other. I've found far more help on Internet message boards such as this one, if only for the fact that you can target your particular problem/question with a topic heading and get answers/opinions from folks with similar experiences.

SoleSinger
08-20-2005, 05:28 AM
Do you know the Lupus Foundation of America doesn't even have a chapter here? My best friend, when he started pushing this support gorup idea was looking on their site and couldn't find one... Then he looked at the Lupus Foundation of Colorado, and you'd THINK that they'd have more meetings in like the metro area, right? Not really... when he looked they were all in places it was going to take me at least an hour to get to, and they were at these ridiculous times, so I couldn't get there anyway... NOT THAT I WAS GOING, mind you... I'm still not sure I'd go for that... even if we WERE sitting in a group as opposed to listening to speakers...

Anyway, thanks for replying! :):):):):):):)