Friday, October 28, 2011

Deficits still, really?

Every time I meet a new person and begin speaking to them about my aneurysm/TBI I always get the same response "I would have never known; I couldn't tell at all, how long ago was it??" My hair covers my scars really well and the 'sink hole' in my skull, from surgery, is also well covered by hair.  I almost always wear my hair down now because wearing it up for too long causes physical pain from he added stress and weight of my hair on my 'still sensitive scalp'!  I am so thankful that only well trained medical professionals question me about the "slight droop in my left side when I smile".  Living day to day, with the constant fatigue caused by the need to think about every little thing I do( I think they call it "loss of executive function", you would not believe how many things you just do without specifically and deliberately thinking about it), I forget it isn't obvious to people! Thankfully, my heart still beats automatically!!!!!  I guess it is not fair to say, "I had to relearn everything", but that is just the best way to describe it.  I still had the long term memory of how to do something. For example,  I knew how to do things like talk and the words for most things, I knew how to say the alphabet, I understood walking meant putting one foot in front of the other.  I just had to relearn "how to use everything" tucked away in my long term memory. So,  saying the alphabet and putting things in alphabetical order are V E R Y different.  For that, I had to use an alphabet strip until I learned how to put them in order in my head without physically touching the letters to see what came before/after each other! The general concept of walking was still there, it was balance that was so terribly messed up (not to mention, how to walk around an object, or that an object needed to be walked around) So, as you can see my deficits are very real to me even if you can't see them most of the time (and for that I am very thankful)!!! For my survivor friends here are some of the deficits I can remember I still struggle with......

* short term memory loss problems and if the setting is loud or has lots of commotion around me it makes everything a million times worse. 
* hard time concentrating or doing any task longer than 10 minutes.
*FATIGUE, FATIGUE, FATIGUE- I need frequent breaks or I have melt downs or panic attacks! After about 4 hours of standing/being upright I need to lay down for a bit in a dark, quiet place free of extra sensory stimuli!
* tightness (tone, it's called) in my left hand and loss of fine motor skills on that side not to mention the "left side inattention where my brain doesn't recognize things to my left side even though I can physically see them).
* talking to people exhausts me in general.  I have a hard time following conversation and sometimes wonder what we were talking about! The phone is the worst, please, just send me an email, unless you have a quick question!!!
*sometimes I still hear things but they don't actually process (so if I just keep saying 'uh huh' that is usually an indication I can hear you but am not actually processing information)
* I take/understand things very literally!!
* I obsess or fixate on things without being able to "let it go".
*I am incapable of multi-tasking and changing tasks is horribly exhausting (hence, the reason I can only last 4 hours at work and then need the next day to recover from it).  It is always 'one thing at a time', I am either talking or scanning in books, not both!!
*sequencing is a nightmare (cooking is very hard for me).  Every day, I make a numbered list of the things I need to do for that day!!
* I am horribly light and sound sensitive.  If you meet me in a store this is most likely how you will find me.  My dear friend, Mer, thinks I may have turned into some kind of 'woodland elf' the way I shield myself from bright lights (again, my pupils no longer dilate properly, it is a 'function of the brain')!!

So, while you won't notice my deficits most of the time, they are very real to me and I will continue to be amazed that you don't notice(or it's not obvious) how hard I am working to carry on 'normally'!!

So despite the fact that it has been cloudy and raining/snowing the last few days this is how you will find me outside my cave/house blocking out every trace of light I can!!!


Anonymous said...

Hi Lisa-

It was good to see you at Teresa and Paul's for the party. You looked tired so that is why I didn't say much. I know you know I try. Thanks for explaining what you are going through, and reminding us when you seem OK and we forget.



Farmgirl said...

I think the thing with this post that strikes me most is how incredibly strong you are to get up in the morning and go about "normal" as much as you do. You truly inspire the rest of us.