Grey is winning

I am just so tired of this new normal.  I am tired of trying my best and knowing that "winning" has a completely different definition with chronic illness.  We grow up playing games to win, we take tests and try and win an A or a percentile, and these days there has become a cottage industry of "winning" against an illness.  There are rubber bracelets and insanely long walks and ribbons all geared towards "winning" the war on fill in the blank.  And for some reason, I am tired of all this winning and losing because even those illnesses where winning is alive and losing is death there are massive shades of grey in between.

I don't think I will ever "win" this thing.  The last three years I have technically been winning...but I also have traded intense fatigue, can't get out of bed all day fatigue for these crazy weird food allergies. I miss restaurants.  Of course I can go in a restaurant, have my plate flagged or eat before I go...but I just miss things being easy.  But in life there is no such thing as easy, just trading problems.  I am sure there are people out there that would say, I will trade you CFS for my Stage 4 Melanoma..and I would run for the hills.  I get that, I know that, but this weird altered life I have that is segmented and focused on trying to get well from something with no cure, no winning, and seeing if you can be the one that out smarts it...well there are days it's just plain old.  It's days when I am so use to good-byes that they don't phase me anymore that I realize my normal is far from normal.

It's f'ing lonely.  And everyone has their lonely. Yesterday I watched black thick blood come out of my veins and thought well it's right there in front of you...and I got in the car and just cried.  I cried because this is not what I thought it was going to be and I have no idea how the story is going to play out.  Then I cried not for myself but for all those out there that have the same situation or worse everyday thinking this is not how I thought things would turn out and yet find away to make "this" better than what they thought.  Am I one of those people?  Am I one of those people that make "this" better...or sit and get covered in the quick sand I am trying so hard to dig out of?  That becomes the real problem that eats away at your head.  Which team am I on?  Am I the I will win within this new normal or will I lose.  Will I succumb to being less than the best version of myself because I didn't see this life that is in front of me coming?  Isn't this what all the bumper sticker quotes are for...days like these?  So like the Devil and Angel on either shoulder, what type of patient are you going to be?  

Specturm

I guess I am both...I am gray and grey and perhaps the "a" is the fighter gray and the "e" is the lonely scared shade.  I love gray, it's my favorite color and one of the few words that has two acceptable spellings...the murkiness of it's shades transcends it's phrase and proves it by it's refusal to play by the rules of "correct" spelling.  So today grey seems to be winning, but gray is the ultimate tortoise and may get knocked down a bit here and there but ends up finding a way to win.  And if you can't win, you find a new way to define what winning is...that is what I am working on. Peace.

small victories...

I just clipped my finger nails.  Yep, that's it.  That's all I got folks, but they have been driving me crazy for about a week and today this afternoon I finally had the energy to find the nail clippers and accomplish what feels like a monumental task.  This reactive airway disease thing is a real pain in the ass.  Just like the rest of my body, my lungs like to over react to an illness, so while I am improving little things make me even more tired than before.  So I didn't file, I didn't push down my cuticles, heck I didn't even put on some lotion...but today it's all about the small victories.  Sometimes that's all we have and it has to be enough.  My friend sent me this great quote that she heard in a yoga class..."just because we are struggling doesn't mean we are failing."  I hear that and feel it loud and clear; because I am struggling.  And until that quote and text I felt like I have been failing too, thinking I should be stronger, more positive, better - just a better version of what I am right now.  I am struggling, but with friends like that how could I possibly fail.

missing...

Anyone that can find my personality and optimism please contact...both are currently in hiding and doing a pretty good job of staying out of sight.  When you are sick it seems you are often rewarded for "being positive" but yet somedays you just don't feel like putting on the charade anymore.  I am tired.  I am sick and I am tired.  I miss my old life, I miss the ease of things, I miss not living in two places trying and trying to get better.  This will pass, always does, and I'm not trying for a pity party...just honesty.  I just sometimes get so close to the light at the end of this and then something just knocks you to your knees.  As always I am mindful of all that is good and true and brings me joy...but somedays you look back and see how long you have been fighting just to get to normal and it all feels a bit for not.  For some reason it's the food that has really gotten me down.  Perhaps because this flu has left me with such little appetite and I would just love some chicken noodle soup with potatoes and celery and carrots.  Or some applesauce or a grocery list of normalcy.  I guess that is what I am missing most, normalcy.

Like any grieving process somedays you are on top of it an others the losses just seem to pile as high as a crash on the freeway.  I've had too much time on my hands with not feeling well enough to really even watch tv so the days have ticked by second by second just waiting for something to give.  Then I feel guilty for not being stronger or happier or more grateful...it all just seems too much sometimes.  And I look around me and thought I never thought it would take this long or get this bad.  I like to take a problem and find a solution and days like the past week I am out.  I am riding on hope and faith of others and realizing you don't always have to be the "up beat" patient...no one gave me a medal when I was anyways so for now I'm just going to keep waiting.

default

Most of us have default emotional states...it's where you go when you are particularly vulnerable.  Mine is scared, always has been.  As a somewhat rational adult I can talk myself down, but sometimes it's not my head that goes there it's my body.  This flu has taking me skydiving to terrified-ville.  It's a bad cough and a bunch of days of a fever..it's getting better but the fatigue that has accompanied it is knocking me out.

I got an email from a friend yesterday and you know when happy things make you sad...well that's what happened.  She wrote a few of us b/c she had gone through some old boxes and found all these letters that we had written back and forth in our college days.  And it brought me back to that time of my life and I ached for that person so badly as my mind drifted to that time I no longer recognize myself.  I wrote back to her, that we are lucky that we can look back and realize we didn't waste a minute of our twenties...we lived in this crazy utopia and we never really took it for granted.  Or at least I didn't.

We can't re-create the past and most of us grow and expand, but everyone once in awhile these friends get together and re-live the old days...they drink too much stay out too late and laugh until their stomachs ache.  And the thing is I can't do it.  I can try and tag along for an hour or so but I can't eat the food anymore, can't drink anymore, and all the sweetness seems to be lost sometimes when you have to try so hard.  I am so tired of trying.

So today...I am going to stop.  Stop trying to be different to be better to be well.  I am just going to sit in this space and find a way to find some peace in it.  Because frankly, I'm out of ideas.

Fate found me wonderful friends...Love has kept them close

Rabbit

For years with this illness when I feel like I have hit bottom, I find there is another bottom waiting for me.  I have like most suffering from a chronic or acute illness played little mental games with myself; continually pulling a rabbit out of the hat and wondering where the hell did it come from?  I arrived two days ago in Phoenix while fighting the flu.  And as I am getting ready for the doctor today I am beginning to wonder if there are any furry friends left to help me find the strength that I just don't feel I have anymore.  So anyone with some ugly multi colored scarves up their sleeves or a spare hare...send them my way.

Control

breathe

Sometimes you just have to watch everything implode.  You can try your hardest to be kind and thoughtful and giving.  You can try your hardest to be loving and encouraging and forgiving.  You can try your hardest to be compassionate and give the best advice you can to help others.  You can try and try and keep on trying and sometimes it just isn't good enough.  Or perhaps it is good enough but it doesn't matter anymore, it just doesn't matter.  And in these moments when you feel like you can't take it one more second the chaos that is around you and the lack of control you have over it; it's a good idea to just close your eyes and breathe.  That you can control and like taking hold of the suction at the dentist, it may not be enough, but it will get you through from this moment to the next.  And the next moment after that and after that and pretty soon this awful pit in your stomach may begin to diminish.  You can look out onto the water and realize you can control the actions of other's as much as you can control the tide, and no amount of trying is going to make a difference.

crash

Then you will do the mantra that you do when you feel so lost you will find gratitude.  You will be thankful for all that you have and all that you have done.  You will close your eyes and know deep in your heart you did all you could with the most pure of intentions.  You will find peace in the silence instead of fear ringing in your ears.  You will find lessons and courage and hope and resilience.  You will continue to try your hardest.

get what you need...

My Friend Dr. Forrest Beck's Book
Cultivating the Fine Art of Selfishness

It's hard to ask for what you need.  Perhaps it's the biggest lesson I have learned if I look back with nostalgia on the last year.  You learn how fragile love is and sometimes mistakes we made way in the beginning set you up for success or failure without you even recognizing it.  That is the hardest part, sometimes it is just too late, and that would be the saddest love story of all if you didn't take the lessons from the past and try and right those wrongs.  I am slowly learning that asking for what you need is perhaps the least selfish of acts.  I will get back at you in 2014 and let you know...

I am not very good at saying good-bye, in fact in a world filled with enough pain to "fill this planet" there is rarely a situation that I can point to malicious intent and lay down the gauntlet of forever shunned.  Perhaps it comes from living a life a bit less than you had hoped for and understanding how hard I try every day to do my best and acknowledge that I am pretty sure most others do too.  Maybe they don't succeed or even fail miserably, but I don't doubt that most people are kind and good and when they go to bed at night they ponder the mistakes of the day and try their best not to repeat them tomorrow.  Most of us hardly need others pointing out our failures, thanks though, I've got that covered all by myself.

I guess if I could wish for anything this coming year it's forgiveness.  I know living with this illness I have a sensitive barometer for happiness and sadness.  When those that I love are in pain or suffering I find it difficult to shield myself from those ills.  I have learned again and again that I have no place for ill will, it brings me down more than it ever would those that it is directed at, and perhaps those that we want to direct our anger and disappointment in if we could dig a bit deeper and see through a lens of compassion we could empower someone rather than tear them down further.  When kindness isn't necessarily earned I believe that is the time when it is most necessary.

May you get everything you need in 2013 and perhaps if you are lucky everything you want.