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 

Thursday, February 18, 2016

Inner Escape

I think we all get to this concentrated and clogged point where we stop talking and go inward.  We escape to the inner self to heal.  We run within hoping we can get skip the storm of pain and emptiness.   We try to decorate our inner homes with positive memories we hold to, holding them close reminding ourselves good things still happen on the outside just not right now and we hold on some more.  We extend hope a few more lengths.  The problem becomes when we live in our inner homes to the point we never come out.  Where we don't trust outsiders with white coats, or friends who say they care.  It's becomes our only world.  Our only internal existence.  there are many days of pain, depression and anxiety that I endured on a couch or laying on a bed exscaping to my inner world replaying old memories, thoughts, good and bad, replaying songs or old movies.  It was bits and pieces jumbled up together.  I know this may not make sense to some but I can get lost in my mind for hours or days to escape pain.  Especially the deep seeded bone pain, heart wrenching, teeth curling body and joint pain, migraines and knots of muscles and tendons mashed together in a solid mass. It makes sense that anyone would want to find a way out.  Anyone would want to find an escape route. Anyone would search for an end.  So often we meet people who seem like they are a walking Zombie, not connected or interacting.  They may seem aloof, depressed, angry or even mean with scowls on their faces.  But what are they escaping?  Stress, pain, loss,... We often stay away when someone acts like this not knowing what to do.  I have no magic potion or formula. 
 I can just say, Listen.  Be around, be available, be open, be kind, and just listen.  Because when someone feels you're genuine they will come out of their inner world in time as they see you are trustworthy and reliable.  That you are like everyone else who sizes them up in one look or assumes myths.  You're just there to listen nothing more and nothing less.  I heard a quote say once "are you listening to reply or are you listening to the person".  We inner worldly beings know the difference because we people watch for entertainment but also to protect ourselves.  We are always on high alert.  I can always tell when someone is really listening to me as a person and when they're doing it out of duty or to look good or because that's what you're suppose to do.  Just be honest and real. It always shines through. 

Sunday, February 7, 2016

Remission Where Are You?

Some days it's like I forget that I'm sick and I push and pull to do all the things I feel I should.  It's not until the pressure to move is gone and I'm home that I realize how much is on my shoulders daily and how much I have to bear up under.  I never thought I would be in a way working part time.  Non-profit doesn't mean less work.  It's passion that drives you and peoples stories that remind you why you do the work.  I just wish my son now 10 could see why I'm on the phone or making graphics.  He's so wrapped in how much he can't stand school work.  We are a homeschooly, second shift, up late kinda family.  We dance outside the box.  He cracks me up.  Little does he realize that learning is a lifelong process it doesn't keep regular hours.  It's a daily, everyday kinda thing.  His smarts and passion make me smile.  He comments and ask me now how my Lyme friends are doing.  Until he's out playing and running around and I have a few minutes to de frazzle I realize that even though he's older and can help I'm doing the pre teenager talks already.  He's changing and growing.  Some days I just hope to be a decent parent and not mess him up. When I'm sick I'm always apologizing for canceling plans or needing extra rest.  I honestly don't have the spoons to live at his speed.  I feel guilty at times still.  I work hard to get us out the door to see friends, field trips, programs.  I just loose steam even after 3-4 decent days I'm back down again needing to be closer to home and rest.  My momentum of this body is snails pace.  While my mind is running ahead of the rest of me.  We do our best to juggle all the pieces and keep everything balanced.  But I'm telling you being chronically sick on top of life is like dragging a boulder around and saying you're fine.  It's the oddest existence.  I don't look sick but some days I feel the weather changing in my bones.  Or my legs hurt as I try to fall asleep.  I still worry about secondary illnesses that could pop up.  Or injury that would set me back.  I still can't focus at times, literally loose moments I can't get back or forget a task.  It's the nagging, delaying last bit of symptoms that pull at me.  I feel like that they keep me back from my full potential and it makes me so angry.  Because I can see it but I'm unable to completely find remission.  I want to fully move forward and be fully myself.  I hate being tripped up by this body.  I want to get ahead and stay there and not worry about when I might have my next setback.  Survival mode is draining.  I want to just live. 

Saturday, January 9, 2016

Why am I wearing sunglasses inside?

As a long term, late stage Lyme Disease patient over the past 9 years I have had one constant symptom for most of my life, photosensitivity.  It's rare you find me without sunglasses on my face or head.  Whether it's rain, snow, sleet, cloudy or sunshine, my sunglasses are on inside my house, stores or outside.  I so often see people wondering why the heck I am wearing sunglasses inside a store.  People stare, make comments to a friend or give me strange looks.  No I'm not trying to look cool or pretend I'm a celebrity.  I live in Maine not California.  But I'm doing my best to get through a store with fluorescent lighting, noise, crowds, strong smells, and narrow aisles.  I'm doing my best to cope with all that input.  The sensory overload can be overwhelming, embarrassing and down right frustrating to someone like myself with chronic illness.  It feels like a full body assault and I'm doing my best to cope.  Sometimes if I can block out the bright lights I can kind of cope a little better with all the other input, remember why the hell in in the store, get my items and hopefully quickly get out of there.  I often like to wear my sunglasses with my ear spuds in, listening to calming music.  Sometimes I need that combo to help me focus better.  I'd rather wear my sunglasses than go home dizzy with a headache, migraine, exhaustion, full body pain, and fog brain.  Could you imagine that something as simple as light could tax you're body to the point where either you avoid the stores or go in with anxiety hoping you can handle it and wondering how you will feel after?  Invisible chronic illness is unpredictable, flares, and down right limiting.  So if you see someone inside a store with a hat, sunglasses, listening to music, unable to process the moment please be extra kind.  That person is working extra hard just to do something so basic and so needed.  They are using up all their spoons just to get items and go home and be toasted for the rest of the day.  A store is dreaded already, the looks by others avoided, anxiety high, a person in this state doesn't needed any added stress.  Just kind understanding.  So instead of staring or wondering why, just know that person wearing sunglasses inside on a rainy day is doing the best they can, with what they have, where they are.  It's an adaptive device helping them cope and survive.