I wish people would understand...

[nerdgirl]

I just came across this board as I was sitting here at work on this Friday evening in the midst of crying and feeling rather hopeless. :cry: I was having a conversation with a friend and realised what a whiney person that everyone thinks I am. I don't think that people understand the extent of pain and frustration I feel sometimes.

And then I start to feel like I should be stronger than this stupid lupus and that maybe I am a big whiner. :angry: :angry: :angry: :angry:

Here is an exerpt:


tgif stef: i feel like ****
tgif stef says: i'm so sick of being sick all the time
Fiona says: what the ****!!
Fiona says: come out and play tonight
tgif stef says: i feel like ****
Fiona says: if you want i will cook dinner for you....
tgif stef says: my muscles are killing me when i walk
Fiona says: but only if you dont moan
Fiona says: now this is an offer you can hardly refuse
Fiona says: me cooking!!!
tgif stef says: i'm just really tired
Fiona says: whatever
Fiona says: friday night
Fiona says: but hey
Fiona says: i know you are old/boring/etc


I wish that this attitude was just one person - but it seems like everyone remembers the old me that used to be non-stop action and fun. And now I am just tired...

Thankfully, my boyfriend tries his best to cope with me and support me. And for that I am eternally grateful.

Now to educate the rest of the people...

[helloos]

Hi Nerdgirl. I have to ask, why did you pick that screen? I don't think you are a nerd. Anyway, I think that your friends don't understand. I think it is very hard for someone to understand unless they are going through it. Now, if you had cancer, they would understand, but Lupus, is a whole different ball game. Maybe giving your friends some reading material on lupus may help them to understand more? Maybe you can say I thought this would be helpful for you since you are my close friend, that I can share how I feel with you. Make them think.
My friends are not much of support either. Some think I have the plague. Others, just don't even bother to ask anything, just figure I have something, oh well. People react differently to illnesses. I would probably tell them that you are hurt by it - them thinking you are lying or whining or whatever they think.

I feel as though I was whining too much to my hubby. I asked him cause he asks me everyday how are feeling today? I say ok, he says really. But, I was complaining all the time and I thought, why complain, it is the same stuff every day. I don't want him to get sick of it. So I try to keep my complains down, unless severe or if he just doesn't believe my response.

I guess I am that way because my mother complains daily to me and I am sick of hearing it. She doesn't have anything either, just all complaints and thinks she has every illness.

Maybe someone will have better advice? Hope this helps a little. :flowers:
Paula

[Tom]

:wave:

I think whining is a habit and you have probably been doing it for quite a while, I had the same problem. For me it really came out when I got stressed about anything, I still catch myself sometimes.

Now that you recognize it, you need to change it around. Start by really listening to what you say, because most of the time it's probably not what you meant or it didn't come out the way you meant it. Start correcting yourself when that happens. Another thing is to take a breath before you talk and think about what you're going to say before you speak. This gets me out of a lot of trouble. It's the old "Think before you speak lesson".

Another thing is to try to look at the bright side of things. Sometimes it's hard to find, but there is almost always a positive side to everything. It will become a habit in time and helps keep you in a good mood.

Before you know it, you'll be a different and even more likeable person, even to yourself. You have to trust me on this one! Good luck. :flowers:

[nerdgirl]

I try to educate my friends and family, but I think that most people can't believe that in just this last year I have gone from being completely active to barely going out at all. So they say that I am getting boring. For me it is just a matter of readjusting my activities... Like now it is hard for me to schedule golf or even holiday plans because I'm just not sure how I will feel on that particular day.

As for my whining, well I try not to whine too much. But I do tell people when I can't go out with them that the reason is I am not feeling well. i have the feeling that a lot of my friends are hurt and think that I just don't want to go out and am making excuses. So basically I am having to reassure people all the time...

Anyways. Today I am feeling a little bit better. So I am going to head out until I start to feel like c*#p again!

Thanks people for the words.

Oh and I named myself Nerdgirl because my website is www.nerdgirl.com !! :)

[alobreto]

Hi, nerdgirl! ;)
In time, if you pay attention you will find out who REALLY wants to know how you feel and who really DOESN'T want to know. Your response to the ones who are NOT interested in hearing about problems should be measured.

You don't have to give ANY reason why you are not going out. If you WANT to give a reason, all you have to say is I already have plans for this evening. Your plans could be that you're going to lay back in the recliner with your feet up sipping tea. It's no one else's business what you decide to do with YOUR free time.

As for whining, I find that this forum is the best place to do that. Not only do we understand, but a lot of pressure is taken off those who are truly interested. The problems we have are NOT something anyone else can do anything about. Why frustrate them with details. Say you don't feel well at the moment, unless there's something they can do to help like vacuum the living room or tend to the little ones so you can rest awhile and maybe feel better after that.

Also, if you are having unrelenting pain, it would be a good idea to get a referral to a pain specialist doctor. They are not just for people at death's door. They help in all kinds of chronic pain situations and know that meds are just one option.
Best regards,
Angela :flowers:

[fancyeggs]

Hi nerdgirl,
I just want to point out something that hit me when I read your converstion with Fiona.
She did offer to cook dinner for you! Seems to me like this is really a friend who is trying to get you out a bit.
Sometimes our whining can get to the point that we push away people that would really like to help but just haven't gotten a good grip yet on the changes in our lives.
I have a wonderful support group of family and friends and they do hear me whine at times, but I try to balance that with remembering they have their normal lives also.
If a friend of mine asks me out to dinner on a bad day I tell them I'm sorry but I'm not feeling up to it and let them know when I'm feeling better I'll call them to go out.....and then I do just that!
When a good day rolls around I get back up with them and make plans to do something....enjoy my good day and put the whining on hold!!!
It's a long slow process, but we must learn to balance 'whining' with taking hold of what we can still do.
I have an acquaintance who has fibro and I hate being around her, whether it's a good day or a bad one! She is constently complaining all the time...If I'm having a bad day, she just makes me feel worse and if I'm having a good day, she brings me down.
Maybe a better response from you when she asked you out would have been....that is so sweet of you to offer to cook dinner but I really don't feel up to it tonight. Can I take a raincheck and I'll call in when I'm feeling better?

[jm_jazzy]

Hi nerdgirl,

I know it is very very hard to be so sore and tired and lonely. My cousin and very close friend said similar stuff to me about being lazy and just needing to 'get through' and how I could go if I wanted to. I was very annoyed with her and conforted her about it. She said she understood how sick and awful i felt and how hard it could be but she really, really wanted to see me. :cloud9: So your friend could be missing you too.

She thought by saying these things that it would get me to try. Sometimes I did try and managed to force myself to go out. Occassionally it worked and before I knew it I had forgotten about things. Your friend did offer to cook dinner which was a least a small help. Perhaps next time if you think you can't possibly go out suggest that you come to her place whilst she gets ready and then you go home.

Or like me go out for a short while and then go home. No ones questions me when I say I am not feeling 100% and want to go. It has gotten me out of some really boring places. ;)

Having said all that on the negative side I also have several other friends who didn't want to know, thought I was making it up, were completely selfish and stopped calling me when I couldn't go out with them all the time. Understanding is very hard to come by.

Perhaps speak to you friend about how you feel that you really want to go but how hard it is (without going into details) and ask if she understands. Ask her how she feels about your illness. We are so wrapped up in everything that is going on we forget we haven't told our friends everything and sometimes have no idea about how they are dealing with our illness.

My husband said I whinged and moaned too much and when I took a hard look at myself I realised I did. So I moderated what I said. I would say ow and if he asked just said don't worry it is just my lupus. So he knows if I mention specifics and how bad I feel then it is bad.

Getting validation from others about how you feel is hard because:
1. only you know how bad it is
2. only you can deal with it
3. only you can it explain to them

All the sympathy and understanding in the world will not make you feel much better but having a friend that tries is better than having none at all. :welcome: BTW you have just made around 10,000 new friends who DO understand. Getting suppoort and advice from here is easy because of this. Whine here and you will not need to whine anywhere else.

:flowers:

Jodie

[mil3tt3]

hi nerd girl,

i have the same problem as yours when i was diagnosed with lupus. i was a whinner. (WAS!) and i started to avoid my friends. because i think they would think of me as a burden as i am having difficulty walking. i walk slowly like an old lady with a crane.

but fancygirl is right. maybe just maybe your friend is trying to understand your situation. she offered to cook right.

it would help if you could communicate with her.

communication is the key. do not isolate yourself because of lupus.

believe me having someone to talk to will help lessen the pain.

milet

www.beingalupie.blogspot.com

[Sleaps2much]

In reading your post and other posts in responce, I thought of a site I just visited regarding stress management. Alot of it is for other stress related problems but some of it is excellent in our cases. There is a chart about Mistaken Traditional Assumption and Your Legitimate Rights and I thought it appropriate to post as well. Hope it helps you some, it did me with my "whining".

http://www.mindtools.com/stress/pp/Assertiveness.htm#Rights

Sleaps

[Pixie coll]

Hello Nerdgirl. I was diagnosed two years ago but as the symptoms keep changing my friends are still having difficulty working out how to handle me each day. I also started avoiding them as I could hear myself whining although I thought that I was just explaining that days misery. It reached the stage that I was biting heads off as there wasn't a day that someone wouldn't ask " How are You and your lumps today" I lost the plot at one pal and that seemed to get the message across. Now they let me talk about it in my own time. I still have days that everything is done in slow motoin, to quote one person " my brain is in fifth gear while my body is stuck in first". You will find your own way to help your friends through this just takes a while for you to find your way first. With best wishes Pixie...

[chantal]

hi ! that was really rude of ur friend to just come out and say that, but it is true we all feel like our friends think that everyday. i need to rest i work and go to school which is no more than most my friends do also, but its just so much harder for us. we say we cant go out and they get mad at us MAD! i can feel it and hear it in there voice. ive got the whatever before to just whatever do what u have to do and u "know" they dont understand. i try to tell most my friends about it, but i dont want to talk about it for fear of sounding like a complainer :blink: anyways im sorry she said that to u i would be seeing colours !!
:love: