I just read your reply to mletters and noticed the part about feeling great and then feeling not so great. I've wondered about this.
I get periods of say, a month or two when I am really okay, energy is okay, I have minimal pain...and then all of a sudden, whammo! I have to lie down all the time, ache all over, get migraines, and have absolutely NO energy.
Do you know of any way to prevent or at least predict the low times.
Sometimes is it just every other day, literally, too.
sometimes i feel it coming. usually after a good window i feel just a little tired. by the next morning it hits. when it started it would hit sometimes in the middle of a really good day. that does not happen as much as it used to. i know when i wake up that it is back.
there is no way to prevent. as for prediction, i know it will be back. just a matter of time. so i do not focus on when it will return. i use the time doing the things i want and cannot do when it does come round the bend again.
we often think our bodies must do our bidding. it is the other way around. we must do the bidding for our bodies. especially since they do still get us from here to there. now maybe the walk is not so hot as it used to be. or the timeframe open is not as big as it once was.
to minimize things i do lay down for 5 minutes usually once an hour. this got me thru weeks of moving, packing, cleaning and the stress of selling and purchasing a home. so i would have to say that was the best prevention. so far i have not hit down and hard from it all. i really expected to fall flat on my face in tremors of pain. just the usual hurts and tired. did i prevent a down cycle this way? who knows. i will have to repeat the test on something else that requires alot of my energy to see.
i think if we all could prevent this we would do just about anything to make that happen. i may have stumbled on to something with the 5 minute lay down. time will tell. i used it when i went to san diego to help my mom. it worked then also, tho not as well. actually i have been waiting since february of this year to land on my face. little half day spurts of exhaustion are all that has happened.
i don't believe i have any words of wisdom to offer other than you are who you are. unique and wonderful, fragil and special. a productive day or a down day do not define you. trying to predict how you will feel in a week is a waste of time. even healthy people can't pull that one off.
be grateful for those windows of energy. they are a ray of sunshine in a cloudy sky.
Thank you, thank you. What a lovely and wise reply. I guess I was seeking reassurance that I need not be frightened about the down times. And indeed, they do pass, making me all the more grateful for and conscious of the good times.
You've given me so much in your posts, and thank you for that, too.