Sunday, September 11, 2016

Daily Life

It's hard to explain to someone that after you vacuum, wash and dust floors that you feel so exhausted you feel like you could nap for hours just from doing that short burst of work.  Its not something that everybody can understand and relate to.  You have to choose between getting something done that's a priority and use up all your spoons or not doing it at all so you can conserve your spoons to do a series of smaller things instead.  I don't like having to stare at dirty floors but some days I have no other choice it's either survive my day and have dirty floors or clean my floors and have no energy for anything else the rest the day or even the day after sometimes.  So I'm not lazy as it may book to someone else what I have to be selective on what activities I do when how much and with how much energy I'm going to be doing them.  No one likes bumping into their limitations.  And no one likes overdoing it to the point that they can barely survive for a couple days afterwards either.  For me over doing it meant really bad arm muscle joint and nerve pain for a couple of days sometimes upper body muscles are tense up so bad that they would push nerves and make my arms go numb.  It would also give me really bad brain fog, headaches, migraines and make me dizzy and just really really badly fatigue.  The worst part about it was I would feel so guilty that there was a pile of dishes, and piles of laundry and that it looks like I just didn't care about keeping my house at all when that wasn't really the truth.  I felt like my chronic Lyme would miss represent the true character more of my true personality or what I cared about.  Because more than likely if I felt better and I wasn't in such bad pain I would at least attempt to try to take care of what I needed to do.  These days I can push it more.  I can think through organizing an area and I can put together how I want something to look that's on my mind.  But before I was way too sick to even get that far.  I was simply surviving day to day that was my goal.
These days I still need to pace myself.  I have a new set of limitations that I have to listen to and I still have my bad days they just don't come as often.  So just because I'm heading towards remission it doesn't mean that I don't have in the back of my mind that if I overdo it that I could crash really hard.  It's a constant struggle between I really want to do something and what will the cost be later and I really want to do something so I'm just going to do it anyway no matter the cost.  It's not something that I always talk about but it is an automatic conversation I have in my mind.  Should I do this, how will I feel afterwards and is it really worth whatever consequences that could happen.  Welcome to the life of a chronic lyme disease patient. 

Thursday, September 8, 2016

Trigger Warning: Poem "I am not fine"

I'm not fine.  I worry everyday that I will be told I'm going through menopause and have cancer.  
I'm not fine and give everyone everything.  And I left with nothing but feeling drained.  I'm not fine I feel numb, lost, exhausted, sad, alone.  
I'm not fine I feel like I have no meaning.  And if I was gone no one would notice.  Only thing they would miss for a fleeting moment is what I did for them only.  But they would never miss me.  I'm just used and disposable.  Just like a plastic red cup. 
I am not fine the physical pain is always there in some form but it never stops ever.  
I am not fine I don't feel rested, I feel like I'm watching myself trying to live a life but why does it have to be so fucking hard. 
I am not fine I just want to be alone in my dark place.  It's the only familiar place I know only too well.
I am not fine the anxiety, depression, brain fog, muscle spasms, eye fog I hate it.  Just because I move everyday doesn't mean I'm fine. 
I am not fine I'm sick of the psoriasis, itchy crawly skin, medical bills, a couple of good days then bad days.  Why can't they all be good. 
I am not fine and I'm sick of the everyday fucking struggle to just get up and live. 
I'd rather be fine than chronically sick everyday of the week, year after year.  I would trade anything I have to not be her.  The one that has to say she's fine but never is. 
If I have to say one more fucking time that I'm fine I will rip out my hair.  
Because I'm not fine.
I will never be fine. 
And no one including me can change that. 
I am not fine at all.  
Stop telling me, fixing me, giving me band aides, advice, sayings, poor yous, 
Cause guess what, I am not fine!!!
And there's no pill to fix this.
I am not fine.  I feel like I dying from the inside out on every level.  
Would you be fine with that?
~Angele Rice