I feel terrible or Oops, I did it again

Today I feel terrible. I ache all over. I have very noticeable rash on the left side of my face and neck. I am totally exhausted. I guess its just life with lupus.

I really wish that I could say that with a straight face. Everything that I wrote above is true. But here is the real explanation. I went out into heat and sunlight yesterday. Because it was late afternoon, I thought that I could relax a little on the sunscreen. I drove to the barber and got my hair cut. Then I took a box to the USP store, and finally a little shopping for household products at Walmart.

I rashed up alright. I "rashed up" because i did not apply my sunscreen correctly. The sun exposure is also what produced the extreme fatigue.

Then I made things go from bad to worse. When I got home around 7pm, I tried to give myself an energy jump by drinking iced coffee (I love iced coffee and will use any excuse to drink it). But of course since it was so late in the day when I consumed the caffeine, I did not get enough sleep last night.

So yea this is my life with lupus ..... lupus and poor judgement. You would think that after 46 years I would stop testing the limits like this. Sometimes knowing better does not equal doing better. So, now I have to except the consequences of my actions. Oops, I did it again.

i do it too, i think everybody does, there are just things we need to due-i dont get a rash in the sun i just get red and splotchy-not a sunburn, just red and ugly splotches and i get i think they call them liver spots, i have little brown spots all over my skin

Hi Ann

I'm sorry you're going through this, don't be so hard on yourself. Progress, not perfection remember : )

Hey Ann! Don't feel bad, Im getting ready to go do something that I shouldn't right now!! I know there is a chance I may feel lousy but I'm going to go do it anyway ;). Sometimes you have to insist on just living. I could follow all the rules and still feel lousy. I'm not trying to justify it, but "it is what it is" and it's going to be what "it be"........ I hope you feel better hun cause I do understand how frustrating it is to just want to do simple things and feel "normal". We all know this feeling of defiance that we have from time to time. Thank you for posting your feelings it really helps me so much to know that the feelings I have are common.


Sorry you're feeling rotten. I think we all have our moments like that. I know I do. I know my joints need rest and frequent sitting periods to relax my knees. Yet I went ahead and took an OR nursing class where I'm on my feet for 8+ hours. Oops. I figured I'd be okay since it's only a two week class, but I'm pooped and my knees and feet hurt all over. I can already tell I'm going to spend the week after the class ends sleeping and soaking in the tub. Plus, I've noticed that sugar makes my aches worse, but sometimes I just really need a chocolate binge.

I hope you are feeling better today, Ann!

I think we all over do it on the days we feel "good" ...at least, I know I do..............and then we end up paying for it......you are so right .....this is life with lupus !

Oh my goodness, you are being hard on yourself! You are so disciplined :). I am still in denial and totally push my boundaries. My job is probably the worst thing for me because it is totally physical and stressful. My doctor told me to wear sunblock when Im driving and I don't. My family wants to go to the lake tomorrow and I don't want to disappoint them so I am going to bring an umbrella, this will be my first attempt at protecting myself from the sun other than just not wanting to go out when its day time. I hope someday I can be more on top of things. I got all my house work taken care of today, I am flaring really bad and it hurts to stand or walk but a little pain medication helped me push through the pain. Im embarrassed to walk like every step is painful because I don't want people to think Im a drama queen or that I want their pity. It cant be avoided rite now because certain steps hurt so bad I can't help crying out a little.

Ann A. said:


If I was in denial about lupus I probably would not have survived for 46 years. And I am laughing at myself because just for a moment - and only a moment - I was tempted to deny knowledge of how my behavior influences my symptoms. As we used to say when I worked in mental health "DENIAL is not a river in Egypt."

But I have spent 46 years learning how my behavior influences my symptoms. And my behavior is the only thing over which I have any control. I am not going to beat myself up over a little slip up because I recognize that I am human being and that to err is human. I consider what I did on Wednesday to be just a little "careless." I mean we are talking about going out after 3:00 pm and not dealing effectively with the fact that I have still not received the modified vehicle registration to tint the front windows in my car.

For me to term my behavior "reckless" would require a much more extensive disregard of the required safety precautions. For example, going out in the noonday sun or trying to hang out at the beach on a summer day. What I did on Wednesday has raised my level of discomfort. Reckless behavior is what sends me to the emergency room. I haven't been to the emergency room in over 20 years. So, much of the behavior that I consider to be reckless has been completely eliminated from my behavioral repertoire.

I have become more photosensitive as I have aged and I am still trying to identify exactly where my boundaries are. Once upon a time 3:00pm would have been a fine time for me to do exactly what I did on Wednesday. Things have changed and I recognized that in attempting to find the boundary, I was a little careless, that's all.

Turkey vegetable soup.