Showing posts from 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 coup…

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 …

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 …

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 …

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…