Questions, Thoughts

So I was looking at some stuff and reading some things about living with a chronic illness. One of the things was to not quit and keep doing. That it’s easy to cancel and so no but if you keep doing it you’ll set a life style for years to come of saying no and doing nothing. Also that you should push your self and get out of the house. My doctor has told me to live as normal as I can and do all I can. So that’s why I am doing school and hanging out with friends. But like to day I could hardly walk or do anything so I choose to stay home and rest instead of hanging out with friends. Should I have pushed and went ahead and went so I would have memories for later? Or did what i did and stay home and rest? What is your opinion thoughts on this matter?

YOU NEED TO TAKE CARE OF YOURSELF FIRST AND FOREMOST. I pushed very hard for a long time, trust me its not worth the price some of us eventually pay.

I have a system that seems to work for me…“green” days are days when you are pretty good, so do what you like or want to do just don’t go overboard. “yellow” days are caution days, where you don’t feel great but not terrible…try to do things at your pace if possible and don’t take on a lot, rest some. “Red” days are oh blank no days…your worst days. Stay home, get rest, take meds etc. Hope this helps

I agree to take care of yourself first. I like the idea of green yellow red days :). I am dealing with a small flare as compared to last year when I had the worst flare ever. Last night I went to the movies with a friend and I am fine today. Listen to your body and maybe push a little if it’s too much bow out gracefully and rest.

I used to push through everything and end up in the hospital and recovering later at home for overdoing. I always do as much as I can, but now my body is less able to do all the things I want. We would all love to be normal, but our bodies limit us sometimes. I agree with doing all that you are able to do, but soon you learn how far you can push your body before you really pay for it for a long time.

I do as much as my body allows. On good days I’m out and about I enjoy my life and So -So days I just do what I can .But on bad days it is what it is …I rest sleep and listen to my body. The people who love you will understand. Listen to your body .

Only do what your body can handle. I have been dealing with Lupus for over 26 years...and have learned the hard way sometimes. I 'try' to live a normal life, as normal as you can with a chronic illness.....I also like the green, yellow, and red day concept. Follow your heart, on what is important. If it's going out with friends , do it...but have a slow pace, if it's that you feel like you need to stay in and rest, get cozy and enjoy the day. Good luck, and feel better

Wow! Thanks for all the input! I too really love the green yellow and red days! I may be putting this information in my next comp. Paper! :smiley:

I love the green, yellow and red days idea! Definately on a yellow right now! I was at green, went to the gym and did a body combat class ( yes, stupid me) and now I’m feeling the consequences. I am new to this disease and am learning the hard way what I can and cannot do.
I want to have more green days, so I’m certainly listening more to my body. I think I’ll stick with swimming from now on!!


I am learning to push and learning when not to push. This lupus disease is a learn as we go kind of deal. Be well.

It's a delicate balance. From experience I know how easy it is to fall into the trap of saying "no i'm too tired" and it turns into an avalanche of refusals to go out, spend time with friends and family, exercise, or do much of anything. I got into this bad cycle and I regret the things I missed out and I used to get depressed on everything I knew I was missing out on. On the other hand, you do have to take care of your body! I think it's good to push yourself sometimes, having lupus it's incredibly important to stay active. I've found that the less I do, the crummier I feel which leads to doing even less. I just started a part time job a month ago and I am so grateful for it. There has been mornings i've woken up and was feeling achy but having to get ready and go to work pushed me through the aches and fatigue. I know if I didn't have this job, on those days I would have just stayed home, lounged in bed all day, and continued to feel achy because I wasn't moving around. But like I said, you need balance. It's ok to push yourself but don't push it so hard that you make yourself worse. This is easier said than done. Good luck finding your balance!

I’m with b1007 on finding a delicate balance. I think. It’s better to enjoy time with friends and then take a day or two off so that you can enjoy getting out with restored energy, but some people prefer to go until they flare. If you get enough rest and stay out of the sun and eat sensibly, you can be okay. Sadly, you justenjoy have to be more responsible than most people your stay well. :frowning:
But you can do it!

I find that when I’m scheduled for something like work or a volunteer event, I won’t cancel, I’ll just push through it. The downside to that is I’ll spend the next 48 hours in bed recovering. As long as I don’t cause a flare, I can deal with that.

Being as active as you can definitely helps - like b1007 when I got my part time job (after months of laying around waiting for Meds to kick in) I felt better getting up and out.

Like everyone says, you have to learn your limits, and learn how much you can push it without causing a flare. Recently we’ve been short staffed at work so instead of working my 15-20 hours a week, I’ve been working 30-40 to help out. I’m now in a flare. I definitely overdid it so I’ve learned that limit.

Learning to listen to your body is the key.

When I'm feeling okay, I forget that I have to be careful, and if I push it I'll be down for days. I try to balance the "I have to do" things with the "I want to do" things. If there's too much on the "I have to do" list, I may reschedule the "I want to do" rather than cancel altogether.

Okay!!! breaking NEW'S here, "Try to LIVE as NORMAL as POSSIBLE ", is defined in many stage's. The understanding of knowing that you want to LIVE is #1. , and #2., is how bad yo want to LIVE! !! We all know, that the doctor's are really trying to comfort you in a sense /degree. Keeping up with what you can and can't do is a GREAT #1. Never underestimate what you can do ( it is possible at your own PACE)#2.. Thing's/event's have to be done at a moment time (better known as the spear of the moment -NEVER PLAN- just do it) , Relaxing, not stressing, PLEANTY of REST all come into play ( which only YOU can do it), and get this! YOU have to be the one to put these thing's in order (YOU). Remember the doctor gave you very good advice, BUT only you can put them in PLAY! !! Sorry if this sound's hard but hey ! we are to help everyone to have strength and FAITH that LUPUS will not WIN , in other word's we are in a BATTLE and all team member's have to be,READY, This is a long FIGHT !!!! .. .Beverly L.

Well I can say I have kind of fallen into the saying no cycle. I actually neglected my health and pushed my limits for several years.. and my breaking point was 2 car accidents, having to withdraw at the end of a semester, and losing a great job... So don't ever push yourself too much.. Balance it out.. What I am going through is so tough.. The depression has me really down and harder for me to function. I have also been a very lonesome person since as far back as I can remember .. So now idk what happen maybe pushing myself too far.. I flare up badly when I am in a social environment.. I'm talking fever, full blown migraine, nausea.. My doctors cant figure me out yet and neither can I.. Its like I woke up one day and my whole life flipped upside down...So take care of your self before anything... Don't push too far for too long cause it will back fire.

One thing you need to protect yourself against is being disabled It is very easy to fall into the trap that'it might make me feel bad' so you don't do it My philosophy is that you are only disabled as much as you allow yourself to be Yep you get tired and yep you have aches and pains but still not a reason to withdraw from the world This is a lifetime illness- be sure that you have a life

I FULLY AGREE WITH POOBIE! It's way too easy to fall into this trap... don't let it happen to you!

I agree with Poobie live your life however if your body can’t do a day don’t push too hard you don’t want to overdo and miss several days instead if just one.

That is always the question I ask myself. If I push to hard though I flare up really bad. I think if you are just fatigues you should try to go. You can always leave if its to much. I think in your case when walking is hard, stay home. I hate for people to see me with a cane. What happen? Is the number one question of the day. I really do not want people feeling sorry for me, because that opens that door for me. Nothing good comes of self pitty. I really like Nicki Ideal of green, yellow, & red.