I stopped working in April 2014, due to fatigue and memory issues. I was sleeping about 14 hours and then taking naps. Everyone keeps saying get out of that habit but it is so hard when you are just exhausted all the time. So I am trying to get up by 930 every morning and limit nap to 1 hour.
Hope they are right and it helps.
Sometimes I still need a nap. People need to understand that one week of work for them is like one day of work for people with lupus. Our immune system is suppressed and screwed up…our bodies just cant keep up sometimes. Good luck though…I hope you find what works for you.
Well, I’m not sure who “they” are. But be wary of the so called “experts.” (Friends and acquaintances) you know your body and how much activity you can tolerate. Hopefully this will pass…it could take a while but just be kind to yourself. I know it’s not a good feeling to always be fatigued.
I agree be good to yourself. We all learn how to cope and figure out what works best for us. I don't do much at all anymore but I have one rule I try to follow, don't lie in bed all day, I bought myself a nice comfortable couch, I have extreme fatigue so I spend my days going between sitting up on the couch to lying down on the couch, i watch a lot of tv, but I seldom go back to bed during the day anymore, I don't know why it makes a difference, but for me it makes me feel better about being sick all the time to be in the living room instead of my bedroom all the time it took me awhile to get to this point, I still have lots of days I want to be in bed, I just refuse to give in. This is what works for me, you do what you know is good and works for you.
Thank you all I am going tey and get a walk in I exercise in the pool every day. And I will try recliner instead of bed for my nap.
I agree with all of the above and for exercise I do Yoga in my day. I also make sure to get out of bed. I usually hang out in my living room just so I am not in bed all day. I have tried the 45 min-1 hr. But unfortunately doesn’t always work for me. But like anything that is suggested on here it never hurts to try and see what works for you individually. Hopeful now in days.
Last thing we need is a non sick person giving us advice. You know when you need to rest, so do it…I cant fight it anymore, always listen to my body.
It"s an individual thing. My usual schedule is to walk my dogs 2-3 times a day for 20 minutes take a short nap and then get about 6 hours sleep a night. Right now I have a new schedule since I have developed severe cataracts and can't see (having surgeries over the next two months) also broken foot that should heal by the time I'm finished with the eye surgeries. Now, I walk the beasties once a day with pee breaks in between. I have a cast walking boot. My caregiver (ex-husband) walks them before he goes to work and after their dinner.
The result of this is that I'm gaining weight, proving the importance of exercise. This should be over soon.
I guess what I'm saying is that you can depend on the exercise (even very light) to get you over some of the fatigue. Work up to what you can handle. Moving around is soooo important.
You got to hold on.
If you are tired, you need to rest. People without Lupus just don't understand, however well-intentioned they are. Yes, for a normal healthy person, this would be great advice, "Just don't sleep so much" But your body does a LOT of healing while you are sleeping. You have to listen to your body, nobody else can "hear" it except for you. There is a medicine called Provigil that is ridiculously expensive (about $36 per pill) but it can work wonders for fatigue. I used to sleep A LOT. I mean, I could sleep for 16 hours, be tired, then take a 2 hour nap, then go to bed early. I had a sleep study done, normal. We all know the journey of figuring out what is wrong. Anyway, it helps to keep you awake if it is seriously causing you to not have a life. I mean, you have to live. If you can get a prescription (just ask your doc), you can order them from Canada (I use pharmawebcanada.com and have been for years with no problems). Canada has a generic version that is about $2-3 a pill if I remember correctly. But it isn't addictive like Adderall or Ritalin. And it really helps. Ins. will only cover it if you have sleep apnea, sleep/shift work disorder, or narcalepsy. So, it's best to just go through Canada bc they will deny it. Best wishes to you, I know how hard it is to be so tired and have nobody understand.