Good days vs Bad days

Its difficult to explain to "healthy people" the difference between my good and bad days.  As time goes on the picture becomes more clear.  As we thoroughly enjoy our UFC parties they become increasingly difficult for me. This is just one example I can think of.  We get the house "ready" which requires more standing then usual, preparing some food (more standing then usual) and then the entertaining (more standing then usual).  Let's just say the next day is a bad bad day.  I typically am in bed by 3pm and stay there all night.  The increase in inflammation from standing causes an increase in fatigue.  That's an example of a "bad day".  This will almost always happen after any social event.  I often have to "pick and choose" what I do socially.  I will always pay for it the next day, and sometimes two or three.  Sometimes things just aren't worth it to me.. no offense to anyone.  My good days I am able to get out of the house, although "getting ready" (hair & makeup) is now an all day ordeal.  I have to take my time as it requires many breaks of laying down. I have to space out taking a bath, makeup, getting dressed, and doing my hair. This process can take hours. Leaving the house takes preparation and thought.  Making sure I have thought ahead, medications, special cushion to sit on in the car, water, food, wheelchair etc.  I have to go to stores that offer electric carts.  I can not go to events that do not offer disabled seating or seating at all.  General Admission is a thing of the past.  I would say on average, a good day is maybe once a week or once every 10 days.  I then spend 1-2 days in bed paying for that "good day".  Let's talk about bad days... no matter what, I always get out of bed.  It's something about the psyche.  Staying in bed is negative.  I get up, no matter how bad I feel, I come downstairs, I drag myself to the couch. I get my coffee, and I struggle through the day.  There have been days I have gone upstairs to nap, or the spare bedroom, but I try hard to not go "back to bed".  I nap often, I sleep over 16 hours a day on a bad day, but I do not stay in bed.  I stay downstairs in a different environment. I have a "Pain Toolbox" beside me. Inside this box is essentials to get me through the day.  Books, magazines, essential Oils, creams, inspirational books, devotionals, color books, and mindfulness meditations, heating pad, and other distracting activities. Throughout the day, on a bad day, I constantly use ice packs.  I may or may not be able to concentrate on the TV. 
I have a couple online support groups I can turn too with people who understand "bad days" or
"flares".  I can minimize these flares by minimizing activity level.  Although then I would have no life.  So for now, I have to accept the "bad days" and take them on.   Good days are becoming far and few.  Friends and family rarely understand, nor do I really expect them too.  I try to educate them through this blog, articles, and further education on my condition.  It's up to them to do what they will with that information.  My world is becoming smaller. I feel it everyday.  Sometimes it feels like agoraphobia.  My counselor assured me that is not what it is.  Its my health, my disability getting the best of me.  I try my hardest to get out on the days I can, to host social events,  but paying for it days on end isn't worth it to me anymore.  Only on rare occassions.   My health, my physical, emotional,  and spiritual well -being is becoming the most important,

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