[This post will not be edited and corrected for spelling/gramar by my daughter….It will be real]

Something interesting (hmmm…..interesting is a funny word to use here) happened to me yesterday.  I started a post about when your having a bad day.  It’s funny because I didn’t realize it was a bad day.  People with chronic issues (especially brain fog) don’t always know when it’s going to be bad.  Sometimes we are even in the middle of a bad day and are oblivious to it.  It’s what happens with brain fog.  Your clueless.  You go on about your day knowing your not yourself  (or even who yourself really is) but even that doesn’t always register that it’s going to be a bad day.  You don’t remember what day, date, time and sometimes season it is.  It was however: a bad day.

I went about my day as usual.  Woke up, surveyed the land and was able to make it to the couch. (yay me!)  I wanted to build LEGO but my brain just couldn’t compute doing it. I literally could not put the process together in my brain how to set myself up to build.  I kind of knew then my brain fog was a bit more than usual.  Instead, I set my things up on my table that pulls itself up to my typing level and followed a routine.  Routines are extremly important.  I turned on twitch. (Twitch.TV has been a God send.  I have met wonderful people and I don’t have to interact or I can)  My streamer I follow frequently was on that morning.  I like to interact in his stream.  He tells everyone new LEGO news and sorts buckets of bricks and minifigures.  It is one of the streams I tend to interact the most in.  But –  I didn’t….I just turned it on and sat there.  I sat there with it playing…knowing I wanted to say hello to my friends but I just sat there.  It just played, more like a radio show where you just listen but I wasn’t even listening to comprehend. I didn’t hello say my usual hello to everyone in chat.  I just sat there…listening, but not.  

On days I have heavy brain fog it’s like there is an intake system and then a yield sign, sometimes even a stop sign.  Sounds and sights go in but it takes minutes, hours or sometimes days for my brain to understand what is being said or happening.  So I sat and listened.  My brain didn’t even compute really that I wasn’t doing anything.  When I say you don’t compute things till the next day sometimes, this was one of those days.  I realize today that I missed yesterday even though I lived it.  I can not even describe the rest of the day only to admit I had an anxiety attack….not a small one either.

I’ve had multiple things that I’ve needed to make decisions about over the last few days.  They aren’t even big decisions.  The stress of not being able to think through them but knowing that something was there needing to be done added to me having a bit of anxiety.  It’s like walking into a room and not remembering why you went in there but know it was something important.  The only problem for brain fog is it’s like walking into ten rooms and not knowing what to do and then standing in the hallway trying to decide which door to try again and not even knowing what is in that room.  You just know all ten doors need to be opened.  Once I start to have anxiety over things I don’t even understand  other things wrap themselves up in it.  I couldn’t walk straight.  My head pressure from my CSF leak was increasing to an intolerable level.  I started to realize I am going to be like this forever and I will ultimately be a burden on my family.  Suddenly those ten doors feel like one hundred.

I was in pain, I was grossly  confused and I knew I was going to be completely dependent on someone else to make decisions for me.  I’m actually aware during this time that I can’t even care for myself.  The only thing I know is that I must get myself to a place where I feel safe (it’s kinda my MO – quietly move to myself to a place of safety knowing that eventually my family will come help me when they see I’m not where I was previously. Don’t draw attention to myself.)  I calmly walked to my room, got in my bed with my warm blanket and called a family member for help.  They were not aware that things were spiraling as bad as they were for me.  Remember, I was sitting on the couch.  I was smiling.  I don’t like to show I’m having troubles as people with chronic issues do to hide the bad (they don’t know what is happening inside our brains.)  My son’s girlfriend came brought me medicine and sat with me.  I lay quietly in the dark with her at my side.

I knew I needed to make myself calm so I closed my eyes and thought of positive thoughts.  When my son had anxiety as a child we would do a breathing technique and made up one vision to focus on.  The vision was him swinging on a swing with me pushing him. In his vision he would lean back in his swing watching the sky. Back and forth, higher and higher.  He would imagine himself  laughing out loud and smiling with shear joy.  This is the vision that I use now for my focus.  It brings me joy to envision this happening.  I closed my eyes, focused my thoughts on that vision and allowed my medicine to help.

I slept for several hours and when I woke my husband came in to try to understand what further help he could give me.  I’m not always able to explain what happened or is happening at the moment if I am still having brain fog.  He understands this and just offers support. He knows he can’t fix anything or even ultimately make things better but he knows that just being present helps.

For those that have a family member with chronic issues, supportive care is an absolute must.  Know that you can not always fix something but that your presence in some way can make this impossible life a livable one.  

Today I’m having a better day.  I’m on the couch again and I’m typing.  I won’t remember everything I typed later and I will be in a bit of panic hoping it wasn’t awful.  I’m glad I chose to type this up though.  It doesn’t explain it all or even in as much detail as it could have been but people just need to know sometimes we need to be real.