I have had lupus symptoms for about a year and am still trying to figure things out. I went on a shopping trip today and felt good for about 15 minutes. Then I felt suddenly extremely ill and had to sit down for a while. My stamina is so low now. I still haven't recovered and feel really nauseas. I can't exercise and I used to run and lift weights. I guess I am just wondering if this is how most of you feel too. I plan to try to do as much as I can within my limits but really just cleaning my house wipes me out.
It sounds pretty normal to me. There are many reasons why this happens. Read through the threads, especially the ones on UV light. Most stores have those and they are hard on you. I find they drain my energy and I have to sit also.
Try light exercise I start with 5 minutes one day and add a minute every other day to build up. Works for me might work for you. I used to clean only during the TV commercials. The house got cleaned and I wasn't too tired. Then I tired the one room per day technic. That worked also.
Try it it might work for you.
Im going to try the clean during commercials thing, I tried to start a small exercise routine but after like 4 days of it I got really sick. Low stamina is pretty normal with all us, it's like starting with a low battery to begin with.
Thanks Nonna. I had totally forgotten about UV lights being an issue. They are such an invisible threat. I will keep that in mind. I had not walked that much in a long time either so I was thinking it was that. I tried shopping at Sam's Club like I used to with a huge list - big mistake.
I really like your cleaning idea. Everything goes better when I pace myself.
I felt so incredibly sick in the store I felt like passing out. I never have and was able to sit for 20 minutes before my husband helped me to the car. I wonder what would have happened if I didn't rest. How much worse does it get?
I can't claim to ever have been an exercise afficiando, but since my dx last summer, after a rather stressful period in the spring as my sx were snowballing, I stopped what little exercise I was doing. My current job assignment allows me to be sedentary most of the time, with short periods of physical activity.(I filed for Reasonable Accommodation under the ADA to get this assignment). At home, I'm no great housekeeper, but I do my own housework and all the grocery shopping as a part of my plan to stay active.
As far as doing other projects, I find I tire much faster now. I try to pay attention to the signals my body sends me. I love my naps. I figure it's going to take several days to paint the exterior trim on the house this year, rather than the 2 days it took 10 years ago.
My problem is feeling guilty about NOT exercising. I try to walk a mile 3 times a week, but haven't gotten back to using the arm and legs weights for even 5-10 minutes. After writing this, I think I'll try, again.
sfruth, lupus foundation of america, had an interesting article this month. it was a reprint of an article in 2004.
it was on the benifits of water aerobics.
basically you do not have gravity when in water.
so you can exercise your muscles, without fatiguing them as easily.
it may be worth looking in to.
each session should not be longer than 1 hour.
As for cleaning the house I vacuum one day mop the next clean the bathroom the next day ect. My house may not be spotless all at once but I would be in bed for days if I cleaned my whole house in one day like I use too. I also have noticed when I'm doing cakes I decorate on the side they are wiping me out but I ain't gonna quit.