personal journey with lyme disease

When Chronic Lyme hits you in the face April 1, 2016

Filed under: Uncategorized — iammorethanlyme @ 1:00 pm

My husband, Dave, is home today as quarter-end is over and his area is closed.  This means that I can have the car for a while to do a few things before he takes his Dad out.  I amped myself up thinking of what I wanted to do.  I was ignoring the fact that I was still recovering from a horrible die-off/flare-up that has left me exhausted to the point of tears and in too much pain to do much.

Dave said something that made perfect sense to healthy people.  It was, “you should just go do x,y and z and if you get tired, leave the store you are at.”  Oh no, you didn’t just say that?!  I already feel like I have tried to explain this to everyone over and over again.  Dave is patient, understanding and takes great care of me.  Does he really not understand or did I just annoy him with my indecisiveness?  Let me explain….

The length of time I have had Lyme and co-infections has absolutely affected the way I think in two ways; the lesions on my brain add to the mystery of what I might say or do and being sick for so long makes me realize how precious the “good” time is in a day.  I over think, over plan and worry about the best time to go out on my own and try to accomplish anything.  This may just be a trip to the library or to the pharmacy to get a prescription.  Most people grab the keys, their wallet and head out.  I have to write everything down so I don’t forget where I am going.  I leave my house and get to the car only to realize I left something I need inside.  This means climbing back up our miserable front steps, retrieving said item and hobbling back down to the car.  Nothing from this point on is automatic.  I have to tell myself every time to adjust the seat, buckle my seat belt, check which side is the blinker and which is the wipers.  Do I need my lights on?  OK, which side of the column are the lights on?  New car? Nope, 15 years old.  This is Lyme.  Backing out of the driveway now and checking 20 times to make sure it is clear and we are off.  Shit, where was I going?  Right, the library.  Crap, I headed the wrong way.  Turn around or go to the pharmacy and wind my way back to the library.  Oh, are we having fun yet?   Shit, do I have the high beams on.  Thank God I am listening to some good music.  Did someone just text me?  Ignore it…I hope it’s not important…ignore it…arrive at pharmacy.  Check that the car is in park, are the lights on? Shit.  Oh yeah, who texted me.  Nothing life threatening, answer them that I am out.  Get out of car, get my balance, lock the car.  Go to store, wait, did I lock the doors?  Go back and check.  This time I make it in the store and go straight to the pharmacy.  Wait where I am supposed to.  My turn and I know everyone so we chat.  Time to pay.  Do you have a wellness card?  I know this.  Yes, but my husband has it with him.  Please enter your phone number. You need to hit enter.  Shit, I know that.  Swipe your card and follow the directions on the screen.  That means that they end up doing most of it.  Do you want cash back?  Just press Yes or No.  No, but I press yes,. Shit~!  Don’t worry, everyone does it.  Oh, do they?  Really? Do they do it every time in every store?  Fuck.  Bye, take care.  Now I probably need toothpaste, shampoo, greeting cards and I start to walk down an aisle and my eyes fill up.  I am so worn out.  I can’t think of what I need.  Where is my list?  I just want to go home.  This isn’t hard, you can do it.  NO, No I can’t.  I did the thing I had to do.  I am out of there.  Back to the car.  Put the key in to unlock it, turn it the wrong way again.  Here we go again with the running list of what to do and check.  I skip the stop at the library as that would mean getting out of the car again and my body hurts too much.  I pull in the driveway and shut off the car.  I look at the stairs I have to climb again. SHIT, SHIT, SHIT.

Every single thing I do is either said out loud or thought in my head.  Nothing is automatic.  The thought of going through this every time I leave the house is why I only make one trip out in a day.  The thought of leaving a store without completing the task would be complete failure and I have enough “fails” to last five life times.