Tuesday, July 30, 2013

3,098 or more thoughts on fatigue

Saturday: I sit here, thankful to be alive but crashing STILL!  I only left my house once this week to attempt my four hour shift at a library!  I'm trying not to pout about missing out on a garage sale adventure with my mom and sister today!  I'm so tired today,  I will save the beginning of this post and finish it another day, I'm too tired to try to put words together correctly! Today I was feeling so tired and down, I thought maybe if I did one productive thing this week, maybe I'd feel better about life! I chose to pull weeds in my flower garden.  I knew better and did it anyway because it was really bothering me! If you have ever had brain surgery you will understand that your head/skull/nerves never go back the same way!  There is always some degree of mild discomfort in the "head crack", as I call it.  Pulling out weeds only exaggerates that!!! I pushed through, determined to check it off one of my neurotic lists! While it feels good to have it done, the process still exhausts me.  It seems so simple, pull weed, put in bucket, empty in woods when full, repeat.  Mix that with balance while bending down  then balance getting up and balance while walking on uneven ground, over roots, up hill etc. It works my brain to think about all that, while you would just have to walk to the woods, dump the weeds and repeat; lucky you!! So, here I sit thankful for amazing family and friends who allow me time to crash still,  8.5 years after my aneurysm ruptured!! I know that many survivors are not given this kind of unconditional love and understanding, the following post is for you (you know who you are)!

Now Tuesday: No power yesterday, who knows why, so no blogging.  Instead I had  a forced "quiet day" to read! So I will attempt to finish my "blog on fatigue" for a friend who asked for a little help describing it to her friends and family! So aneurysm survivor friend, here you go:

I'll do my best to describe the horrid fatigue I am now plagued with.  I have never experienced a fatigue like the one post aneurysm/brain injury but, I think I have said it before, it is like living your life in 'finals week' at college. Now, I went to a small private college but I am pretty sure the feeling is universal and easily remembered.  Your brain is so overloaded with information it literally hurts and you are sure not one more thing will fit in there! Thankfully, back then my brain at least had an "autopilot mode" to carry on with. I remember eating only out of necessity because your lack of sleep and too much coffee made you nauseous all week long! Every little thing seems like it is just going to be "the straw that broke the camel's back", so for a week, you just exist in survival mode.  You just need to get through the normal every day routines caring very little about extraneous things (do my clothes match? did I take a shower today? am I wearing shoes? who cares if my feet are covered).  It is all out survival mode, you are simply too tired to even care or have energy to take care of all the little details, It's simply too much to deal with! Oh, and making decisions, what are those?? I don't even know what I like and at this moment I'm not sure I'm left with liking anything, I feel N U M B. Except, I'm left with a brain that can't handle too much light, or sound.  It feels like these things are a personal assault to the delicate balance of remaining nerves and neuropathways!! I feel like I want to curl up into a ball in a dark quiet corner, while my flooding brain unwinds! (*Earplugs may have saved my marriage several times already when the volume of the television or radio were unbearable to me, and yes I wear sunglasses when it rains or at dusk, I have no shame, it's pure survival)
Photo by me edited on PicMonkey.com

We, as grateful survivors, understand your life has been turned upside down by this too too! We understand you feel like you lost the "old us", we miss us too, please find ways to love us now for the new great things about us so we can start to love ourselves now too. We need your help to move forward in life and discover what we tare good at now, it will be different but there is certainly something good to find!  We need help redefining ourselves, not just as people who beat the odds and survived the unspeakable! Yeah, we know "what could have happened" and we are trying to make the best of it now, thankful for life and moments we get to be part of even if we miss a few along the way out of sheer exhaustion! Please be patient with us, but don't treat us like a child who never knew anything "before"!! Sure we have things to work on too, we are well aware, even if we aren't able to express it or deal with it yet or ever, fully!! It is too big to even process!! Saying words like "lazy" are very hurtful! We don't want to be "lazy", we simply lack the capacity to do anything some days but sit and stare everything else is too many steps or just plain too exhausting to face!!!Nobody knows why some days are good and some days aren't, they just are. Please know my brain caan't recover from things as quickly as yours! Realistically, parts of my brain are probably completely dead now. Other parts work overtime, ALL the time to accomplish anything!!! Frequent naps and rests are vital to my damaged, healing brain even several years out. While I am resting, is the only time the brain can heal! I need you in my life and I need you to remind me, who I am, when I forget! Together let's look for the good and positive experiences we might have missed, if this never happened.  The people we met, the friends and family who faithfully stayed by our side, the new depth and compassion for others going through trials or the assurance we are surely here for a reason!! Thank you for reading this, there is no way you can fully understand this journey I am on, unless you live it too and I would never wish that for you!!
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Anonymous said...

Hi Lisa-

I hope you are feeling better today and able to be out on this beautiful day.You are in our prayers and loved more than you know.


mamakat said...

li sa,
thank you so, so much for taking the time to write this. it's so frustrating to have to constantly remind everyone that my brain doesn't work the same as it once did. reading your words made me realize that something is wrong with them - not me. i have a valid excuse for my issues but there's absolutely NO EXCUSE for being mean, degrading and judgmental. why is it so hard for them to understand i'm so lucky to even be alive now? i could never be so harsh to a person and certainly not someone i loved.
i know how difficult words are now so please know how much i appreciate the effort it took to put your thoughts down. real simple magazine has an essay contest and i really, really, really want to enter. the challenge question is, "what is the bravest thing you've ever done?". it nagged at me for days until i listed some brave things i've done yet to get my ideas, my story, in print is an exercise in futility. even more frustrating is that many people once encouraged me to write but i've lost the ability.
thank you again, love.
sending you healing, love and appreciation simply for being wonderful you.