Connect with others who understand.

sign up log in
Resources
About MyLupusTeam
Powered By
Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Work Through The Burn Or Rest?

Work Through The Burn Or Rest?

I am new to the Lupie world and have a question. On the days, mornings, nights when you are not in a flare but, feeling extreme exhaustion and pain which is better? Do you push through the pain or rest til it passes? I am finding myself washing dishes with a dizzy head and shaking hands, doing laundry on the floor because I cannot stand to fold, and I have started to sleep downstairs more due to the stairs. On the days I'm pushing through I find myself praying that I make it through without… read more

posted January 26, 2016
Last of 254 replies sign up to view previous answers
A MyLupusTeam Member

All the answers seem to be wise! :) Debilitating fatigue is not only physically exhausting, but it also works on our emotions. These feelings of & I'm speaking for myself,( worthlessness) make me very sad sometimes. Everyday is like a battle field. Some days I win. Other days when Lupus rears its ugly head, I do even more praying than I usually do! I know that my strength comes from The Lord and that Lupus is not my fault and I am not worthless. When my body says rest, I rest. I take breaks between almost every task. Sometimes when I feel very bad, for hygiene, I wash my hair in the sink (REST), get a shower (REST) and then finally get my face scrubbed, teeth brushed and put on at least some lipstick! Love my lipstick! Anyway, you are NOT ALONE in your frustration. I have learned that even with the hand that I have been dealt, that I can be a blessing to perhaps someone else. Finding sitting activities of crochet or knitting can be done & then items can be donated. When you can't sleep, you can direct your thoughts to pray for other people. ~ With having children (mine are grown now), it is hard for them to understand and I think they're scared. My children learned at a young age to do many things for themselves because I could not. It broke my heart.They did washing, cooking etc. They knew/know I love them SO MUCH. ~ EVERYDAY I lift up to our Heavenly Father ALL the people here on the "my lupus team" site. I don't know so many and yet I love you ALL! ~ I could not get through this without The Lord. HE IS MY STRENGTH!!!! Hugs and Prayers to you :)

posted January 27, 2016
A MyLupusTeam Member

I understand how you feel. I have had lupus for quite a few years now and am starting to recognize that things change and I cannot do what I used to. I had been very ill and after my dx and treatment I rallied and had good days some of the time. I went back to university and finished my Masters degree and got my "dream" job. I traveled more and had more stress. After 3 years I had gotten progressively worse but kept trying to push through. I ended up off work for a few months and when I returned could no longer work full time. I started 3 days a week and managed for almost a year. I kept pushing through but realized the pace was too much. Travel and stress was becoming problematic and I did not feel well. I was put on modified duties (no travel) for 6 months but was loaded down with case work. I didn't listen to my body and crashed. I can no longer work and have to apply for disability. I have fatigue, joint pain, mobility and continence issues, bad arthritis in hips, hands, back and neck. My mouth and eyes are very dry. The fatigue at times is overwhelming and 2-4 hours sleep per night is a good night. I am on 24/7 slow release narcotic meds for pain and get cortisone shots in my shoulders, hips and hands. I should have listened more but it is tempting on a good day to overdo it and too much of a good thing does not pay off in this respect. I am a slow learner but no choice but to listen now! Learn from my experience - listen to your body, pace yourself, don't allow others to pressure or guilt you into doing more than you can. And live your life to the fullest! Rant complete 😊

posted June 6, 2016
A MyLupusTeam Member

Hi , I have found out over the years that the more I push myself the wrose I get, please rest in-between what you have to do it will still be there tomorrow. Also there are other people in the house that can chip in and help. You have to start taking care of you, are you will not be there to take care of them. It does not hurt a child are husband to have some chores, and it will make them responsible adults.

posted January 27, 2016
A MyLupusTeam Member

I've found to my cost that I need to listen to my body and react accordingly. Pushing through just never works for me and I end up losing a couple of days to bed and pain. If I had just allowed myself breaks when necessary I would have never got that bad. It took me a while to change my mindset from ' I'm not going to let Lupus control my life' to recognising that ' I am taking back control of my life so that Lupus doesn't have to '.

posted June 2, 2016
A MyLupusTeam Member

Yep just like most Lupus patients I pushed and pushed myself. It just does more damage, the stress of trying to do everything with cause the lupus to flare. Most important thing is rest rest rest. Take care of yourself first which is almost impossible to do if you have kids but it you don't you won't be able to take care of them. Delegate. Have a great support system and don't be afraid to ask for help. Try to get your husband to understand your limitations. That may take awhile. Reach out to others like this web site. "Talking"
To others who are going through the same thing and have problems like you have will keep you sane. When I read other people's stories I'm like "I'm not crazy"
Hang in there. It took me years to learn to take better care of myself and I'm still working on it.

posted March 18, 2016

Related content

View all
Does Anyone Know Of Some Options For Financial Assistance Programs?
A MyLupusTeam Member asked a question 💭
Has Anyone Been Told From Their Rheumatologist That Lupus Doesn’t Involve Muscle Pain?
A MyLupusTeam Member asked a question 💭
Pregnancy
A MyLupusTeam Member asked a question 💭
Already a Member? Log in