May 12 "I Sing. I Dream. I Love…Anyway."

Having one of those days…

Trying to keep myself from falling into the “feeling sorry for myself” mode.

I’ve been really struggling the last few days with the inconsistencies of these diseases.  Someone asked me if the pain was the hardest thing to deal with.  I told them the pain was nothing compared to the roller coaster of not knowing how I will feel the next day or even the next hour.  I crave consistency and routine; two things that are pretty nonexistent for me right now with EDS and POTS. 

This little vent-fest is being brought to you due to a couple of today’s events.  I woke up.  Felt pretty good  which is pretty standard since I always have my best hours in the morning.  Ribs were in place.  Neck wasn’t spasming.  There was no blood that had pooled in my feet when I stood up from the bed, went and got coffee, and sat down on the couch.  My energy level felt okay.  I picked up the house, wrapped a few presents, and started laundry. 

Then it was therapy time.  I did all my strengthening and got through it okay.  I had saved my elliptical work for last since I know that that is what zaps the most energy out of me.  I was truckin’ along fine and then BOOM.  I felt dizzy, like an elephant was standing on me, and I couldn’t form a sentence because I got the dreaded brain fog.  Then came the icing on the cake…. I  got sick all over the elliptical.  Yup, puked. 

Within seconds and without warning, POTS had attacked and ever since, I have been down for the count. Needless to say, my plan to run errands after therapy was thrown out the window.  My plan to do my second “Larry homework assignment” was thrown out the window.  To be honest, right now, I am having trouble even thinking about walking to the bathroom because the fatigue is so intense.  Not tiredness, but fatigue that makes me feel like I have the flu.

So to sum up my venting for today, this is what is the hardest for me.  Dealing with the unpredictability of living with chronic, invisible illnesses. 

I know I will have the better days~The days where I get through therapy, still feel strong, and am still able to run a few errands.  Those are the days I cherish.  I hope that as I continue to move forward, I will be able to recognize when a bad spell is coming on before it hits.  The goal is to get to a point that the good days become more CONSISTENT and the not so good days are fewer and farther between.  That is what I am working towards everyday.

So to snap out of my pity party, I will leave you with two positives.  My lip looks normal again, and the following is a song that has been my anthem for today.  Lauren on American Idol sang it yesterday and it reminded me of when Brad and his Mom danced to it at our wedding.  I loved it then, but listening to it four years later, the words hit me a little harder this time.   

Even on my bad days I know, I know, I know that I must “build it anyway.”