I am finding it very hard to get the motivation to try and lose the weight that I have gained since on the prednisone and just to overall try and take control back over my life. Guess I'm dealing with depression from all of this. tired of dealing with pain everyday and feeling fatigued, and all the other good things that come with lupus. I'm sure many of you feel the same way, any suggestions on how to get motivated? (and find the energy)
I have been saying the same thing I want to do so much but no energy and have had a lot of pain in the past few days. I have no motivation
Ditto. Frustrating when no one in my family understands. My husband just tells me to try and if I nap too long, wakes me up.
Well personally for me the tired feeling has never left but i try to find a reason to keep living something simple like a new show that is coming on that i am curios to watch take naps rest when your body tells you to and taking it day by day and know that there is something bigger for us we will see the light
Wish I had some helpful words of encouragement, but I am dealing with the same issues. Also, does anyone else get flu like symptoms.about once a month? I am so sorry I am not offering any cheerful words of encouragement but I feel terrible today. I hate this miserable disease.
Yes- motivation for me is a tough one as well. But those flu like symptoms several times a month are just as bad.
Motivation is lacking on my part too. I wish someone would tell me how to feel motivated to do anything when your days start with exhaustion, pain and feeling like you've been hit by a truck, that's just the beginning of the day. Flu like symptoms I think exist in all of us, its easier to tell someone its just the flu; that they can understand, tell them its your lupus acting up and you might as well have 3 heads and be purple. Sorry we all seem to be having a bad day.
I feel so bad not having any helpful info and that I’m not the only one. I’m at exactly your same state and am totally in the same space you describe. I try to keep my spirits up but when my life (the one I used to have)has come to such an abrupt end I’m at a loss. the pain, weight gain fatigue, depression are winning at this point. I think it would help if I met someone personally that I could get together with and maybe motivate each other. All I can say, that I tell myself all the time, is that I have to just pray it gets better. You’re not alone if that helps it all. Sorry I don’t have a more uplifting suggestion…
It is hard to not be able to give advice on this one. Laura, I, too, wish that I could find someone close that I could meet with, that understands, even just for the moral support. It is so difficult to try to keep explaining to people why I have to cancel plans, or why I just am not up for company. Sometimes, even when there is not much advice we can give, its uplifting hearing/reading that we are not alone in what we are feeling. My prayers are with you all today.
Where do you live JoJo?
I am in Green Mountain Falls, Co. About 15 mins west of Colorado Springs.
Dear friends, I just re-read all of our comments and for the first time in a couple of days, I started to laugh. If anyone would like a profile of a “typical” lupus patient, they should read our comments today…and there is no doubt in my mind that they would realize the only thing typical about any of us is we are all sick and tired of feeling sick and tired. Lupus is truly powerful and misunderstood illness. As I lay in bed with yet another lupus flare, I thank God for all of you and the fact that we all seem to have well defined
sense of humor. God bless you all. You manage to bring joy to my heart.
I am with the rest of you. AGHHHHHHHHHHH I WANT MY ENERGY BACK! I say that phrase probably 5 to 7 times a day. If I could figure out how to extract some of my 4yr old granddaughters energy - & use is..... I will let you all know.
If you are like me there are days that you don't want to go anywhere or do anything... but guess what I have to go get gkid to and from 2hr pre school fix her lunch, hope & pray she takes a nap but wakes in time to get our 12 yr old from school. Then come back home & about 5pm ....the witching hour......i need to fix supper, our 12 yr old needs help with homework, the grand kid gets into everything or whines or oh lord any number of things. I try to fix supper, no sooner get that done. The hubby gets home. He is pretty good at helping most times. Then its time for baths & hopefully bed for the gr. daughter. I try & get dishes done & realize our 12yr old needs her certain outfit washed etc etc......I just want to go to bed. Thankfully gr daughters mom finished school & has moved & YEAAAAA I miss her terribly but I needed some me time. Time for me to crash. School is out for 12yr old & now we have softball few nights a week & 2day tournaments on wk ends. Monday after tournaments.....I crash. I hosted/put on baby shower for our 2nd oldest since her & hubby moved back & crashed after that was over. Now a nieces wedding this wkend & after that more softball followed by more crashes. I felt better a few years ago when our household of 4 girls & hubby & me went down to 1 girl & hubby & me. I was able to get things done at a snails pace but I got them done. Now.....I have had more flares & crashes & I am starting to bruise more & have a bout of cellulitis (infected lymph node) behind my right ear & bruising on foot & arms on top of my veins which means a bout with deep vein thrombosis. I feel like shi..take mushrooms & I need to get my house cleaned before someone calls child services about our sticky kitchen floors & dust bunnies planning a revolt.....lol I wish so wish I had some magic words or miraculous advice for you to help you get your energy back but,,,,,I don't. I just tell myself keep swimmin & it is the little victories that make me happy (most of the time). If I don't think of the positive I pull myself done even more. Humor is another way I deal with the doldrums & depression. I have tried anti depressents & I am all for them but I am too sensitive to meds & had some very unpleasant side affects. So......i bring the clean laundry up in phases & dump it all out on floor & watch what I want on tv while folding. kind of a reward for me doing something. If I feel up to doing housework- I have gotten tools to assist me like the Shark Steam Mop that also vacuums the linoleum or tile & steam cleans it. when I clean the shower (keeps me down 2days after cleaning) I use a daily shower cleaner to prolong the cleaning in between. I guess try to do what you can when you can & find easier solutions to help you accomplish what you want to get done. I would love to be able to hire someone to pick up & do hard chores like cleaning bathroom & few other things but... not in the cards right now. Hang in there - you will get some sort of groove back. It just won't be exactly what it was like pre lupus. One of the hardest things especially mentality wise - is to do things like you used to.. Just take it one bite at a time. take care Wish you the best.
Linda Bull said:
Dear friends, I just re-read all of our comments and for the first time in a couple of days, I started to laugh. If anyone would like a profile of a "typical" lupus patient, they should read our comments today...and there is no doubt in my mind that they would realize the only thing typical about any of us is we are all sick and tired of feeling sick and tired. Lupus is truly powerful and misunderstood illness. As I lay in bed with yet another lupus flare, I thank God for all of you and the fact that we all seem to have well defined
sense of humor. God bless you all. You manage to bring joy to my heart.
Exactly what I was thinking. I still don’t think anyone could really understand without going thru it themselves. We’re in the club. We’re the only ones that truly get it. Sick and tired of being sick and tired… And in pain. What a club. I think more than ever that if we just keep in touch with each other there’s some kind of relief to know while you’re miserable that you’re so not alone! Thank you to everyone that commented on this issue.
I can't help with the Lupus part, I don't have it my girlfriend does but the loosing weight part I can. In November of 2012 I was 258 pounds and started thinking about loosing weight. I knew I was eating the wrong stuff so I slowly started replacing one thing at a time, bad for good. First was potato chips, I switched with nuts and unbuttered popcorn, Hamburgers I switched out for chicken sandwiches. Lots of things like that. I didn't really start loosing weight but wasn't gaining any more either. In February of 2013 I got serious about it and started cutting back on the amount I was eating. I still didn't have the motivation and it was hard but I kept with it. In June of 2013 I had lost 10 pounds and then the motivation really kicked in and I started feeling good about my body and what it could be. I am now 205 pounds and feeling better than I have in a long time. I never really dieted or exercised but just started eating differently and changed my outlook on food. I know you have the added burden of prednisone but think that once you get going and see a few pounds come off you will find the motivation comes on stronger. Good luck, I know you can do it. Oh, one added bonus, I have had to get new clothes a couple of times in the past year because the old ones were just too big to wear :-)
Thank you for all of your responses, it would be wonderful if some of us were nearby so we could get together and possibly help to motivate one another. We just have to stay positive and keep trying, I guess!
Thank you SactoJim, great advice. I actually got a book called 21 day sugar detox hoping this will be a good place to start. I need to get a juicer or at least a blender before starting since some of the recipe suggestions offered in the book are fruit or veg. shakes/smoothies. I have a very bad "chocolate" addiction, lol
It’s so difficult, I have a recumbent bike at home and should be able to use it. But I notice that whenever I start to exercise anymore, I get injured. Even low impact seems to be difficult for me.