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nicolehinkel
08-01-2011, 08:41 PM
I am on of those people that everyone always comes to and relies on for everything and people insist on telling me every ounce of their life and normally that's great I love it. But right now I am having a horrible flare up, with a great deal of personal stress in my life, and just getting diagnosed and I need a break from everyone that relies on me, I need some TLC. How do I get this and not feel guilty for needing it?

ruziska
08-01-2011, 08:55 PM
There's a wonderful word in the english language and it is spelled N O no. Practice saying it. The thing is, you have to take care of yourself first. You really don't have a choice. Being sick will not be ignored. It will not take a back seat, it won't accept a raincheck, it won't leave you alone, give you a break or buzz off. It DEMANDS attention. It demands to be the center of your universe. It will fight harder and louder until it gets your full attention. You have to respect it, recognize it, learn to live with and deal with it. You cannot brush it off and take care of others then possibly, maybe deal with it. You deal with it, you take care of it by taking care of yourself and THEN you take care of everyone else. If you don't take care of yourself, you won't have the ability to take care of anyone else. Guilt? It is something you'll eventually get over. You keep telling yourself that I need to take care of myself first. YOU are your best advocate. YOU are the voice. You explain to others what is going on, or not if you chose not to and you take care of yourself. Those who really love and respect you will get it and be fine with it. Those who don't, in my opinion, aren't worth the energy. It isn't easy putting yourself first. I'm not going to tell you it is. For some people it is the hardest thing they'll ever do but it must be done. Self preservation. Taking care of ourselves. I have a friend who tells me that if I can't be good for myself, I'm no good for anyone else. Words to live by. Once that sinks in, the guilt fades away.

lovedbyHim
08-01-2011, 11:00 PM
Hi Nicole, I too am a caregiver. My profession is social work and I naturally give of myself without ceasing. But you learn over time to balance that. I have a dad who suffered a stroke years ago. I was burning myself out trying to live up to everyones expectations. Finally I said, I can't. My sister became very angry and the guilt was hard, but I have no regrets. Balance is vital when every day your own body is waring again you. Stress is horrible for lupus. Have you read "The Spoon Theory?" This might help you. It's on the net. I don't know how to clip and paste, but I'm sure you can find or someone else who reads this will. Bless you dear as you learn to balance demands placed on you.

Tammy2011
08-01-2011, 11:28 PM
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/



is this it?

Nonna
08-02-2011, 02:04 AM
I'm am also one of those that everyone turns to. And the hardest thing was learning to say no. Now I simply say" no I can't help you this week; maybe I can next.". I stopped trying to give explanation

As for getting someone to give you TLC - you need a friend, a real friend. And they are hard to find, good luck.

Just know that your virtual friends are here

lovedbyHim
08-02-2011, 02:29 AM
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/



is this it?

Yes! Thank you so much!

sharpiessave
08-02-2011, 05:48 AM
Ruziska, this is absolutley the most brilliant, brutal and concise way of saying this I've ever seen. I want to print it out and carry it around in my pocket to look at the many, many times I have to say no. It comes at the perfect time in my life, too. This time last year I wasn't ready to hear any of that "no guilt" nonsense. I thought I could handle my sickness right along with everybody else's struggles. It was like I had to proove myself still useful to everyone. Yes, my knees are killing me, but I'll still take out the trash in the snow. Yes, I feel like I'm imploding, but I'll still be your daughter's free daycare. Yes, yes, yes, yes, yes. . . My revelation didn't happen overnight. It took quite a few times of crashing hardcore to get it into my thick skull that I wouldn't live very much longer if I kept up the pace of my 'well' self. In fact, it was a little less than a week ago that I finally realized the guilt was gone. It didn't take my compassion with it. I still do all I can for whoever I can. But when I can't, I don't feel ashamed anymore, and that's made a huge difference in my quality of life.

rob
08-02-2011, 05:57 AM
There's a wonderful word in the english language and it is spelled N O no. Practice saying it. The thing is, you have to take care of yourself first. You really don't have a choice. Being sick will not be ignored. It will not take a back seat, it won't accept a raincheck, it won't leave you alone, give you a break or buzz off. It DEMANDS attention. It demands to be the center of your universe. It will fight harder and louder until it gets your full attention. You have to respect it, recognize it, learn to live with and deal with it. You cannot brush it off and take care of others then possibly, maybe deal with it. You deal with it, you take care of it by taking care of yourself and THEN you take care of everyone else. If you don't take care of yourself, you won't have the ability to take care of anyone else. Guilt? It is something you'll eventually get over. You keep telling yourself that I need to take care of myself first. YOU are your best advocate. YOU are the voice. You explain to others what is going on, or not if you chose not to and you take care of yourself. Those who really love and respect you will get it and be fine with it. Those who don't, in my opinion, aren't worth the energy. It isn't easy putting yourself first. I'm not going to tell you it is. For some people it is the hardest thing they'll ever do but it must be done. Self preservation. Taking care of ourselves. I have a friend who tells me that if I can't be good for myself, I'm no good for anyone else. Words to live by. Once that sinks in, the guilt fades away.

If we gave out awards for great posts, the trophy would go to you Ruziska.

Well said.

rob
08-02-2011, 06:09 AM
[QUOTE=sharpiessave;94079]Ruziska, this is absolutley the most brilliant, brutal and concise way of this I've ever seen. I want to print it out and carry it around in my pocket to look at the many, many times I have to say no. QUOTE]

I agree 100%.

It's powerful stuff, and a frakking awesome post.

nicolehinkel
08-02-2011, 08:29 AM
Thank you everyone. Yesterday morning I thought I was having a good day well then I crashed and then was a little better and now I just got up and feel dead to the world, I'm so exhausted however I have to get stuff for my son's birthday tomorrow, I have client's tax work sitting here to be done and I have to be in work in a little over 3 hours and I's so exhausted. I just left work early on Thursday to go to the emergency room, friday I called out because of the ER dr and then worked Sunday but now I have to work 5 days in a row. I can't afford not to but right now symptoms are so bad. I have so much stress right now and was told that triggers flare ups but the flare up is causing me more stress and it's like now that I know what the illness is, I feel like I am using it as an excuse.

nicolehinkel
08-02-2011, 08:41 AM
I saw this explained on some website I was on but in a video version, so with this link I just printed it out and posted it on my facebook account so all those that are in my life and demand so much when it's to much I can say read this or look at my profile.

nicolehinkel
08-02-2011, 08:43 AM
Part of my problem is taking care of myself. I can more easily tell someone no then I can do what I need to for me. Like right now I am exhausted but I need to eat but I don't have to energy to make something, I could order out, but I am low on funds and still need a shower and have to leave my house in 1 hr until 9:30 tonight. Ugh, it's nice having a diagnosis because it's not in my head but it sucks having to cater to it.

rob
08-02-2011, 10:25 AM
I have so much stress right now and was told that triggers flare ups but the flare up is causing me more stress and it's like now that I know what the illness is, I feel like I am using it as an excuse.

Hi Nicole,

Stress can definitely cause a flare, and the stress from the effects of the flare can cause the flare to get worse. They feed off each other.

As for feeling like you are using Lupus as some kind of excuse, try to remember that there is a difference between an excuse, and a reason. My Lupus isn't used as an excuse to not do certain things, but it is the reason why I cannot do these things.

Rob

PS-Welcome to WHL.

ruziska
08-02-2011, 11:29 AM
Awww geez Steve, I'm blushing! or is it a malar rash? I know, its a blushing malar rash! anyhow, thanks for the high praise. I just calls em as I sees em.

lovedbyHim
08-02-2011, 01:00 PM
I saw this explained on some website I was on but in a video version, so with this link I just printed it out and posted it on my facebook account so all those that are in my life and demand so much when it's to much I can say read this or look at my profile.


That's perfect!

tgal
08-02-2011, 02:46 PM
I saw this explained on some website I was on but in a video version, so with this link I just printed it out and posted it on my facebook account so all those that are in my life and demand so much when it's to much I can say read this or look at my profile.


I am really confused. It is most likely my brain fog because I have been having tons of CNS issues so forgive me if I am being an idiot. You say "I saw this explained on a website"... what did you find? I don't see any link or video in this post

nicolehinkel
08-02-2011, 03:39 PM
The spoon therapy. When I was searching for lupus info I saw a video clip about the spoon therapy. NOt exactly described in this setting it was a group thing.

lovedbyHim
08-02-2011, 04:23 PM
Thank you everyone. Yesterday morning I thought I was having a good day well then I crashed and then was a little better and now I just got up and feel dead to the world, I'm so exhausted however I have to get stuff for my son's birthday tomorrow, I have client's tax work sitting here to be done and I have to be in work in a little over 3 hours and I's so exhausted. I just left work early on Thursday to go to the emergency room, friday I called out because of the ER dr and then worked Sunday but now I have to work 5 days in a row. I can't afford not to but right now symptoms are so bad. I have so much stress right now and was told that triggers flare ups but the flare up is causing me more stress and it's like now that I know what the illness is, I feel like I am using it as an excuse.

No it's not an excuse it's a REASON you feel so horrible. Sleep heals me as good even better than steroids at times. Until you get proper meds you may have to take off and pay bills late. I just missed 9 days of work until they figured out the two hormons that were low and vit. D . I was shot and falling asleep at the wheel. Sometimes it is the only thing we can do. Please don't let yourself or anyone else dictate your well being. Listen to your body carefully from now on, because if left intended, it can start hitting organs. That is what recently happened to my thyroid. There was no pain but I had all the symptoms of hoshimotos flaring.

nicolehinkel
08-02-2011, 04:46 PM
Thank you so much. It's nice having support because I don't get it anywhere else and all I want to do is cry right now. I'm just tired of complaining but there are so many symptoms.

lovedbyHim
08-02-2011, 05:23 PM
Thank you so much. It's nice having support because I don't get it anywhere else and all I want to do is cry right now. I'm just tired of complaining but there are so many symptoms.

That's what we're here for. You are in a bad spot right now and it sounds like you've in it for awhile. Cry all you need and sleep. Soon you will be on meds and slowly you will notice symptoms lift and feel alive again. Until then then vent all you need, but also take extra care of yourself from here on out. You may have to set new boundaries and delegate more responsibilities. Don't worry if the kids get made at you for it. If their not mad at you for that, they will be mad at you for something else(grin). There is a reason it's called the angry years.

Read the threads on fatigue & sleep. She them with your husband. All of us crave sleep because our body is so busy attacking us plus trying to fight the bad boys. Is it any wonder we get so tired we cry. When you need a nap, be sure and tell the kids how vital sleep is for your survival. If they don't respect your need for quiet to sleep for at least an hour nap, well...5 AM seems Luke a great time for you to run the sweeper in their bedrooms. Lol. Just a little thought. I had step children that had no respect for my sleep so I am a little touchy about this. The new you will need to develope new plans, and that is okay. Good Luck Nicole. We are all rooting for you on this end!

tgal
08-02-2011, 06:52 PM
Ohhh The spoon Theory! We give that out to newbies all the time. It often helps with families and friends. It helps them to understand what we can't say. Thanks so much for posting it!

mdawncooper
08-02-2011, 07:05 PM
It is so hard to say "no" but I am gradually learning it. I am responsible for the care of my parents and my father just died and I am not sure that everyone really understood the tole the stress was taking on my own body. Because you look good, to them, they assume there is nothing wrong with you and they don't have a clue that you feel like war is raging in your body or your so exhausted you could fall over. When I explain to people that I am not feeling well and why I often think they really don't care or think I am whining.

I will pray for you to find balance in your life. Keep us posted.
Melanie

nicolehinkel
08-02-2011, 07:32 PM
Thanks Melanie,
I guess I have that little voice in my head that I've heard for most of my life that I am a hypochondriac and it is harrassing me telling me don't complain, don't talk about it, just shut up and deal with it. Which causes stress which causes me to feel worse. Ugh.

Thanks for your post and thank you everyone for listening to my negativity today. This is all so knew, as I only went to the doctors yesterday getting my official results and I am in a major whirl wind.

tgal
08-02-2011, 10:22 PM
Thanks Melanie,
I guess I have that little voice in my head that I've heard for most of my life that I am a hypochondriac and it is harrassing me telling me don't complain, don't talk about it, just shut up and deal with it. Which causes stress which causes me to feel worse. Ugh.

Thanks for your post and thank you everyone for listening to my negativity today. This is all so knew, as I only went to the doctors yesterday getting my official results and I am in a major whirl wind.

I know this is going to sound silly but I want you to stop here and take 3 deep breathes (I mean it.. 3) . Now I want you to think about all those years and people that made you think that you were crazy for being sick all the time and then think of the diagnoses you received today. That diagnosis makes everything that was said before obsolete. I know it is tempting to get overwhelmed with the diagnosis but if you stop and think about it this is a wonderful thing! No, you don't want to have an AI disease but isn't it great to know what all of those people that made you doubt yourself were wrong! You REALLY were sick and you are not crazy!

The scary part really was before your diagnosis when no one knew what meds to give you and you just kept getting worse and worse. The name of the disease doesn't change how sick you are. You were that sick before they said "Lupus" but they didn't know what to treat. Now your doctors can find the right meds to help you get out of a flare and into a life that you can enjoy.

The tough part is over. No need to doubt yourself anymore. You are, and have been, ill. Now you are on the road to getting well!

steve.b
08-03-2011, 02:05 AM
I know this is going to sound silly but I want you to stop here and take 3 deep breathes (I mean it.. 3) . .....The tough part is over. No need to doubt yourself anymore. You are, and have been, ill. Now you are on the road to getting well!


great advice !!!!!!!!!!!!!!!!!!!!!!!

debbie-b
08-03-2011, 05:00 AM
It is hard to say no, especially to the ones you love.
My kids and grandkids live in Texas, I live in NY. My kids call pretty much every day, especially my oldest daughter, who is 33, she can talk for hours, about nothing LOL. On days where I just don't feel good, these phone calls were like a chore. I love my children and felt compelled to talk to them whenever they called, but was mentally and physically exhausted after every call. That is when my husband said, you need to tell them, " not today, I don't feel strong enough". That is when I came up with a solution, when I feel bad and can't talk, I will unplug the home phone, but have my cell phone on for emergencies only. They all excepted this idea and thought it was a good one. If they just want to chat and I don't answer, they know, that mom is not feeling well, but they can still get a hold of me if it is important. Guess what, in two years, none of them have ever called my cell phone, thank God for that.
Saying no is ok, when you are just to sick to do anything.

Debbie