Everything in life depends on the day I suppose.  Some days are good, some are bad.  There are those days though that you just aren’t sure how it is and it takes starting the day to see where it is going.  Having chronic illness makes every day very different and makes me a bit undependable.  It took me a long time to deal with being undependable.  What took me so long was realizing that it is okay to be undependable sometimes in life.  We can’t all always be available.  We can’t all always be able to do the things we want but when you are never sure if you can or can’t it’s a hard pill to swallow.  My general being loves to say yes.  YES!  “yes, I’d like to go to the concert,” “yes, I’d love to watch your baby,” “yes, I can make a birthday cake.”  When in truth it… depends on the day.  

First thing is to wake up.  That is a measurement all on it’s own.  I suffer from insomnia.  When I do get sleep I tend to dream unbelievably vivid dreams.  Dreams so vivid I believe later that it happened in real life.  Waking up for me can be on it’s own schedule.  My true goal is to be awake by 9 a.m. however if I don’t go to sleep until 2 a.m. and I’ve dreamt all night a scheduled waking time may not always work out.  I am so blessed in my life that I have amazing support from my family.  They understand my insomnia and they try very hard to work around it.  My husband works from home because of COVID-19 and that is a huge help.  He comes in to wake me at my scheduled time bringing me my first cup of coffee.  He has learned to gauge whether or not I’ve slept well or even if I am waking with a headache.

The second thing is to determine what I have in place already on my calendar.  I have many doctors appointments and am lucky that most of my appointments can now be on telehealth.  Telehealth is a God send for those with a chronic illness.  Beginning the day can be hard but to have to dress and get out to an appointment can be an unbearable thing.  No one likes to wait in a doctors office waiting room but doing it while your in pain or unable to be upright makes it extremely difficult.  While I may have chronic illness I am still more determined than ever to do everything I can to keep the house running.  I am not reliable to keep it physically running but I can keep everyone on a calendar,  make phone calls and set things up for everyone.

The final thing to determine what I can do for the day is whether I can physically sit up or I have to stay in a reclined position.  Having a CSF leak makes being in an upright position very difficult.  If my leak is very active I generally have to remain flat and stay in bed.  I will always try being out of bed first.  I may start in the recliner and then advance from there or I may have to stay in the recliner.  Advancing step by step is the main idea on harder days.  From bed to recliner.  Recliner to walking in my lower level.  Walking in my lower level to sitting  on the couch and continuing from there.

My goal for every day is to do everything possible including getting out for a short trip to the store.  For me everything….depends on the day.’