What a just awful awful day.  Thank God that it's almost over.

I'm lying in bed...again.  Here I am.  This is where I spend a majority of my time, here in bed.  The positive outlook is that our bedroom is gorgeous.  A peek-a-boo fireplace faces me that also faces the tub in the master bathroom.  Not so bad, and much better than our previous bedroom where I also spent a good portion of my time as well. 

my sanctuary

peek-a-boo

I now have a migraine. 

I started off the day feeling generally bad.  Yes, this is normal for me these days which have added up to more than a year and a half.  I think that I have a lingering sinus infection that somehow got caught up in the mix of the bronchitis flu whatever.  Sinus infections to me are as yeast infections are to some women.  I always seem to get them.  And with my immune system already compromised, they don't go away that easily.  Unfortunately I have spent the past year and a half on and off of very strong antibiotics and "we" are now worried that my body will get used to them and that they will eventually be ineffective.  So what do I do?  I really don't know.

I am in so much fucking pain right now I want to rip my eyes out of their sockets and swirl my brain around my head.  THIS sounds GOOD to me.  THIS would ease the pain, I am sure.  Thank GOD that I'm not on acid.  As I lay back on the bed rubbing my eyes and sinuses and pulling my hair because yes it feels good I think to myself, "I just need to make it to Layla's tomorrow."  THIS is my goal.  To make it to my hair stylist to have my hairs cut.  THIS is all that I need to do tomorrow and I NEED to make it there.  And I am trying to figure out HOW to make this happen.  I NEED to make this happen.  As I lay there with my husband at my side, I say "This is no way to live."

I have described it recently as running through quick sand.  This is how I constantly feel.  Like a bad dream that you need to get there and you are running and you feet are moving and moving and you haven't moved at all.  And you really really NEED TO GET THERE...

What's amazing to me is that a very close relative came to me recently suggesting that I go and get a part time job.  You know... just go out there and maybe work part time for Starbucks or something.  I love this.  I love this on many levels, one because as I just mentioned, the idea of GETTING to my hair stylist tomorrow which included waking up, bathing and driving to seems like an overwhelming feat to me.  And two... well I've worked in a coffee shop before.  It's work.  A lot of hard, physical work.  And if I can't even find the space in my mind to MAKE it THERE, how and the hell am I going to get through a day of work?!?

This is just no way to live. 

My energy level has decreased since July.  I have yet to regain momentum.  I keep thinking that it's coming, ohhhh it's a coming... but it just never has.  I have a good day here and there, but for the most part I can go about two or three hours and then I crash.  And no one really understands.  No one gets it because when they see me I smile and am cheerful and happy, happy, smiley smiley... positive, helping others blah blah blah.  People don't understand chronic fatigue syndrome.  John gets it because he lives with it and is affected by it every day.  My doctor gets it and tells me that it's going to be at least another year, but that I will EVENTUALLY be feeling well again.  I think that my father FINALLY gets it.  (Hi Daddy!)  But everyone else... well they forget or don't quite understand or wonder just why the hell I'm not working or what I do with my days.  I'd like to know that one myself. 

TODAY... TODAY I went out. 

I've been sick for weeks and last week I was feeling a little better so I was in catch up mode.  I've written about this before.  I'm down, I'm down, I'm behind and now I have to catch up and spend too much energy catching up and I am once again down.  Well, last week was catch up week of desperately trying to get on top of housework and laundry and everything else that I need to get done with so that I can crash again in something like peace of mind until things start to fall apart again.  This, this is my life.  But today I took myself to one of my favorite places and got my eyebrows waxed and got my toe nails done.  I wasn't up for it, but part of getting things back in order includes myself, my appearance and how I feel about myself physically which leads to how I feel sexually, my confidence level etc.  I've been living in sweats, my husbands t-shirts and whatever I can grab to push my hair away from my face.  Some days I don't even have the energy to get out of my pajamas.  If you know me and know me well, you know that I'm a clothes whore and fashion junkie and my recent appearance has not been up to par at all.  Unacceptable.  So in a feeble attempt to as Daddy says, "get my groove on," I dragged my sorry ass to Bell's and asked them to do me up.  This is one place where I know how to relax.  It isn't fancy or anything, but I love them, they love me and the price is one that I am willing to accept for now.  Siitting there in the rolly chair with hard balls massaging my back, sipping on the green tea latte, watching the koi fight to be leader of the moment circling round and round looking for some food, there's got to be some food here, no those are rocks and more rocks... I began to relax, grateful that my angel sent from above today didn't speak dobre (very good) english so I could just zone out and let go and let my eyes cross and uncross.  And laugh REALLY loud because I can never handle when they scrub my feet.  They are used to my reactions now, but the customers... they don't know what to make of me.  So I did that and went home after stopping by the grocery store for a few items.  I made it home after three hours which is always another thing to be grateful for. 

This has become a new fear of mine.  Making it home.  I'm always afraid that I will just be overcome with exhaustion and not be able to make it home.  I've been known to nap in the car before, but these days would much rather do it at home.  Maybe it's one of those things about getting older.

I want to write more... I want to write so much more.  I have so much, just, bleck inside and I need to just let it out.  Let it out, let it go, move on.  I try so hard to move on and make the best of each moment.  Tonight I am struggling.  Tonight I am weak.  I said to John, "I'm not sure if I can take another year of this."  Another year... it's been nearly two, and I have yet another one to look forward to.  The only thing that I can hold onto right now is my mantra that this too shall pass.