Lupus Support Group

I just wanted others opinion on when to push through the joint pain, fatigue, etc and try to live a "normal" life or when to stay in bed and rest. I have stayed in bed and on pain meds for the last 48 hours miserable all because i felt good on saturday and went to the mall and dinner with my Mom and Sister. I would love to get some work done, maybe do some grocery shopping, etc but everytime i go out and do anything then i am stuck in bed in pain again! Just so discouraging! I am thankful for how mild my case is compared to others but i just dont know how to handle this stuff. How many of yall work (yes im from TX)? Exercise? Plan to have a child in the next few years?

CONFUSED!!!

Hello. I completely understand your frustration. I feel the same way. On those good days with energy and lower pain levels, I just want to make the best of it. Go out and enjoy. Yes, and then, I know I do this with the uncertainty of how I will feel the next day. Sometimes it's OK, and the next day is not that bad, but sometimes, the next day is like WOW, did I really do too much? Sometimes what my body considers too much astounds me, because to me it just seems like normal stuff. I know some people have gotten good about not overdoing it on the good days in order to save themselves from the days after. I am not that good. I just want to enjoy each day as much as I can, and sometimes I'm just willing to take the pain the next day, remembering the good times I had prior. I do work full-time. I don't exercise, but that's mostly out of lack of interest more than because of Lupus. I already have a child that I find it hard to manage, so no, no thoughts of anymore, and my Rheumy has told me it's too dangerous for me anyway. I kind of feel like the amount of energy and strength it takes to carry her up and down the subway stairs in the stroller, run after her, etc, is enough exercise for me. No desire to join a gym at this time. I hope you can find the happy medium, or become accustomed to the Lupus roller coaster. I think each person finds their own way through this crazy life with Lupus. Good luck. Let us know how you're doing.

Hi,

Well let me tell you this is hard all the way around, but you have to press on no matter what. Yes you do need to rest, but to keep going and get some outside activity or just making yourself move is an absolute. You don't want to end up in a wheelchair becauase your legs become useless. I live with chronic fatigue and pain 24/7 and it is not fun. But I know from experience that you have to make yourself move. Once you start moving in the morning, keep going until you have to rest and then get a good rest. Believe me, it will work if you put it into practice. Lupus is a mean disease and affects each of us differently, but please just move as much as you can tolerate. You don't want to end up in a state where you cannot move because your muscles atrophy.

Have a good day and hope this helps.

Lena.....Whenever I have an opportunity to go somewhere I make sure I rest for a few days so I can enjoy an outing. This weekend I am going out of town so in order for me to enjoy I will be resting this week. It's a balance that we have to figure out. I know it can be frustrating but in order to make our lives a little easier we need to balance out resting and playing. It's only taken me 18 years to figure this out LOL. I wish you the best.

Eva

Only 18 yrs huh?!?! Purrrrfect! I suffered through the grocery store and a few errands today and now im in bed with a sore throat and headache. The sun and heat (80 today) are realllly bothersome which is something new for me. Thanks for the advice!