Lupus, An On-going Balancing Act
If nothing else I think most of us with Lupus could probably agree that it's a hard balance at the best of times.
August was a horrible month for me & it's ironic since seeing my rheumy a while before that he had felt he could classify it as "in remission" as I had been quite stable for an extended period of time. I, of course, was elated.
Looking back I believe that alone made me get a bit careless & feeling invincible. Aug 1st I spent the whole day outside at a horse show & it was a sunny sweltering day. I was totally covered (head to feet) & felt I had taken good precautions. (Thank you so much Tracy for reprimanding me on that). Shortly after that I started having on & off again days of feeling so flu like & feeling like I was coming down with something then I'd feel good again. This just kept going on. I had so many days where I was just dragging & almost couldn't function properly. I never associated it with that one day cause after all I was told I was more or less "in remission". Invincible right!
I shake my head now at my stupidity & won't ever do that again. But a new friend I connected with, who I hope is maybe reading this, pointed something out that just stays with me & is I believe so very very true abt using the term "remission" for Lupus. Dr's really shd not use remission and lupus in the same sentence. I fully agree with Tracy in that saying it's in a "quiet time" could be much safer as lupus is always there, it never goes away, it can become quiet but is still ready to awaken at a moments notice as I've now found out.
I'm slowly starting to come back to where I so happily was but I sure don't want to relive August. Who knows one of these days I may actually be able to go out and/or do something in the evening rather then feeling ready for bed by 7 p.m.
So I felt I shd put this in print in the hope that maybe here on DS there might be some more inexperienced or newly diagnosed lupus people that might benefit from it.
On a different note - do others get as frustrated as I do some days at having a day where you know you're just too limited to totally function the way your heart & mind wants to?
I'd really like to start really investigating into diet related information for Lupus however I find the internet information can be so conflicting. I once came across three sights that could not agree on any one point, whew that was confusing. So if there's anyone reading this that has useful points please feel free to let me know.
August was a horrible month for me & it's ironic since seeing my rheumy a while before that he had felt he could classify it as "in remission" as I had been quite stable for an extended period of time. I, of course, was elated.
Looking back I believe that alone made me get a bit careless & feeling invincible. Aug 1st I spent the whole day outside at a horse show & it was a sunny sweltering day. I was totally covered (head to feet) & felt I had taken good precautions. (Thank you so much Tracy for reprimanding me on that). Shortly after that I started having on & off again days of feeling so flu like & feeling like I was coming down with something then I'd feel good again. This just kept going on. I had so many days where I was just dragging & almost couldn't function properly. I never associated it with that one day cause after all I was told I was more or less "in remission". Invincible right!
I shake my head now at my stupidity & won't ever do that again. But a new friend I connected with, who I hope is maybe reading this, pointed something out that just stays with me & is I believe so very very true abt using the term "remission" for Lupus. Dr's really shd not use remission and lupus in the same sentence. I fully agree with Tracy in that saying it's in a "quiet time" could be much safer as lupus is always there, it never goes away, it can become quiet but is still ready to awaken at a moments notice as I've now found out.
I'm slowly starting to come back to where I so happily was but I sure don't want to relive August. Who knows one of these days I may actually be able to go out and/or do something in the evening rather then feeling ready for bed by 7 p.m.
So I felt I shd put this in print in the hope that maybe here on DS there might be some more inexperienced or newly diagnosed lupus people that might benefit from it.
On a different note - do others get as frustrated as I do some days at having a day where you know you're just too limited to totally function the way your heart & mind wants to?
I'd really like to start really investigating into diet related information for Lupus however I find the internet information can be so conflicting. I once came across three sights that could not agree on any one point, whew that was confusing. So if there's anyone reading this that has useful points please feel free to let me know.
Replies
So good to see a journal from you.Sorry you had such a bad month but happy you learned from it. Even though I don\'t have Lupus I do have days (most every day) I can not function like I used to. My COPD is getting worse and I know it , nothing I can do about it either except pray to God to help me make it through another day. May God Bless you Pat with a way to help you find a relief for your illness. I love you so much.. Frieda
I hope you have a much better September. Thanks for the prayers. I\'d pray for you but I get discouraged praying.
Just read your journal now. Sorry you have been going thru alot with your Lupus. I do pray September will be much better for you.
I have gone thru what you are going thru now. Many years ago. I couldn\'t function at all. All I wanted to do was sleep and more sleep. No energy and trying to raise a young child. It was awful.
This will pass my friend and you will feel much better. I\'m sending you positive vibes your way. Plus a prayer.
Love ya Nance
Oh, my friend, sorry I missed this one somehow, but I can totally relate. I think when we have a good day (month, year) we think we will just go ahead and climb that mountain. And I think we do it because ... we\'ve been dying to for so long! The hardest thing for me about being sick has been that I learned (boing, light bulb going off) that when you are sick, your body and mind don\'t match up. I always thought that when someone was sick, they mind was in slow-mo/lesser desires too. Not so! It\'s always so good to have reminders from other lupies isn\'t it? I agree, quite time, or \"good days\" are better than calling it remission.
I\'ll message you about the diet ... love you, m