My Roses

Sophie

Baseball

So much to say swirling in my head, but I am too fatigued and overwhelmed to put the words in an order that makes sense.  But crabby seems to sum it up.  I am crabby, short tempered in my head, and trying very hard to not take out this frustration of the past week out on everyone else.  Because I know at the base of the anger, which is an emotion I don't get very often, I am just plain scared that this spiraling health issues will fail to get better and only get worse.  Because it seems just like when I can handle one set of circumstances, I am asked to adapt to a host of others, and this week has left me mentally and emotionally fatigued.  Two days ago I pruned my roses in front of my house.  Twenty minutes, I pretended everything was normal, just a normal healthy 39 year old, sitting on a step stool, wearing pink gardening gloves, on a beautiful fall day - clipping off rose hips.  People walking by, wouldn't give a second glance, my dear Sophie laying near by, soaking in the sun.  I also had Addi over for an hour that day or the next, can't remember, we played, "mean Queen" and she didn't notice when I let her watch Olivia that I was in the dining room  breathing in and out of the nebulizer.  Three year old bliss, I never tire of watching her, and was thankful for the fact that she didn't know what energy that hour and a half took.  Outing to SteinMart with mom.  An hour in the driveway with my friends and their neighbors.  My hydrotherapy treatment, and hour of relaxation.  These are the moments this week I hold on to, gripping to the moments where I feel "well enough",  the fear of the unknown like a shadow lurking around the corner.  So when I was on the phone listening to my best friend and her "stress" about picking up her daughter from soccer, exhausted from working non stop, who to disperse Brewer playoff tickets to, etc...etc...I had to fight not to yell and scream, I would love those stresses, I would love to participate fully in life again, and I know better, I know that is never fair to compare.  But somedays, I just want to know, will I really ever get better, will I get to stress about the fixable, or am I back in bed, ruminating on what maybe I should try next, who to see next, who has the answers, and please, let me just not get worse.

I'm afraid today.  And I hate being afraid, its a fear deep in my cells, and I'm tired of just trying to get to tomorrow.  It often feels like a cruel joke, all the blessings I have in front of me, yet can't seem to grasp.  I often then feel like a failure, maybe someone else in this circumstance would have figured it out, look at all that people accomplish with far worse ailments, Steve Jobs, Stephen Hawking, maybe I should change my name to Steve.  I know what I would all being doing in good health, how to I get to that level of success I feel I demand from myself in this new state?  That is what I will work on, acceptance, I had spent so much energy denying these circumstances, I haven't fully figured out how to live within their constraints. 

So to all of you at the playoff game this afternoon, I am sorry that I am a bit crabby towards your good fortune, baseball seems to epitomize enjoying the simple pleasures in life.  Who else signs up to spectate at a game with no end time...so for all you true lovers of the game, I am not angry or crabby at you, I am envious of you.  A simple day at the ball park, eating a brat, enjoying the sun, having a beer, the patience to get there and not know when the final pitch will be thrown.  I embrace you and hope next year I can find a way to be you.

New Year's Eve 2009

Calm in the Storm

Nine-fifty two pm, Tuesday, October 4th - the calm has finally arrived, I am grateful, I am thankful, I am relieved.  For approximately the last 34 hours, I have been bashed around, thrown around, stuck in a rip tide, struggled and grasping for the calm in a body that decided to become the storm.  And it isn't until this calm has arrived, that I can breathe in freely, and the static of arrhythmic noise has ceased, that I can fully appreciate how little control I had, against, the crashing waves of disharmony.  Dis-ease, that about sums it up.

I want to scream for the road map, an atlas, anyone have a compass - what did you yell for Julie,"vic's vapor rub, Robitussin"? those words came from my head because yours i couldn't forget, when i read them, i understood, not your war, i could never - but i deeply understood yelling for a life boat. Desperately wanting someone to give you the answers on how to solve this problem.  Find me the missing puzzle piece, direct me, I will follow.   So now is as good as any time to thank you, for without your courage in telling your story, I don't know if I would have begun to tell mine. Because it helps and if you can hear me, thank you.  Julie Forward DeMay, rest in peace.

Just tell me where to go, what to do, and I will follow.  I will take the panic attacks back, because even in those times of utter terror and loss of control, deep down, if I dug to the deepest places in me, I knew control was in letting go, and it would pass.  I could practice breathing techniques, behavioral techniques, and if all hell was breaking loose - that pretty baby blue 1mg pill.  But this, none of that works.  I am just a tiny sailboat, in an angry ocean , and I can't find my way back home.

It all started with a hunch ignored, b/c unfortunately the years of panic attacks as a young child taught me to ignore all the warnings, ignore the voice that said "that's scary", and so I learned to push through, and push through, ignore and ignore, and some how I not only managed to survive, I managed to thrive.  It was the coach that told you you weren't good enough, strong enough, tough enough, and you were the winner in spite of it.  But this, I don't know how to beat this, my strategies have failed, and tonight, when the calm came, I realized, I had very little to do with it.  So I must learn how to ride out a new storm.

The hunch was a bowl of chili, the chili that made my tongue feel a bit funny the day before.  But, I wanted to prove to myself that I was over-reacting, couldn't be - beef, tomatoes, kidney beans, celery, I think I can eat all of those things.  But, still, yesterday - forget about yesterday.  But kidney beans are related to peas, and you can't eat peas. Your fine, you had this same chili two weeks ago, but two weeks ago you took a Benadryl.  Or wait celery, celery is a cousin of carrots, and without thinking, an automatic response, you are spitting a small piece of celery out.  IGNORE THE CRAZY VOICE JUST EAT THE DAMN CHILI - but on bite two, that little voice, was no longer the coach pushing me to be the best, it was instinct telling me danger was real. Put down the spoon, and get ready for the storm.

So 34 hours later plus Benadryl plus Pulmacort plus Prednisone plus Zopenx times two and three and who can remember anymore because I am so drugged up, but the storm inside of me finally gave way. Plus the hydrotherapy, colorpuncture, homeopathics - i do not discriminate solutions.  Do I feel fantastic - that would be a negative, but do I feel relief - absolutely.  My throat is sore from clearing it and coughing.  My head feels like it is spinning from the drug cocktail that was needed to harness this relief.  But I am a bit scared, because there seem to be landmines everywhere - and just when I feel like I am making progress,  I am reminded of the strength of mother nature - and all i can seem to do is get out of the way.

This is chronic fatigue.  It comes in all shapes and all sizes, its a body that has short circuited, and your hope is in finding your own personal road map through the battle ground that your body has become.  And you wish that tomorrow when you wake up like groundhog's day all over again, perhaps there will be a pair of ruby slippers, waiting to take you back home to your life before...

Andy Rooney

Today was a big day - a very big day...mildly quoted from Jerry McGuire.  Today, I completed the entire day by myself.  This sounds like the statement of a child on their first full day of school, or a teenager the first time they were trusted to be on their own, but for anyone out there knee deep in chronic fatigue, you will most likely feel what I mean.  From waking to an 8:25 pm bedtime, I did every step of this day on my own.

My family many joke live similarly to an India, Indian family  - without the large compound, but often it seems that would be more practical.  My sister and her family live in the house behind mine, or as they would prefer, I live behind them - since they were there first.  My parents, live three turns - including turning in and out of driveways, and less than a mile, where my 96 year old grandpa lives with them.  And four turns from them, less than a mile is my aunt and uncle.  So this weekend, when they all made the trek to the Packer game, my boyfriend left for the Brewer's playoff, and my best friend was in Green Bay covering the game - I was left alone to hold down the forts.  And I would be lying if I wasn't nervous.  I made my own breakfast, made my beloved Sophie her breakfast, went and let my sister's dogs out, took them for a short stroll - they were in heaven, due to my fatigue - it was mutually beneficial to let them stop and smell to their hearts content - went to the grocery store, drove boyfriend to Brewer game, stopped for coffee, got sophie a doggie carseat, back to sister's fed dogs, walked through backyard got myself food, back to sisters, short stroll with all three dogs, back home, made dinner, cleaned up dinner, brushed teeth and here we are....I made it.

Seems to most like a pretty relaxing, chill day, but for me, it was monumental.  I am sure I am not speaking to just those with Chronic Fatigue, but any long time illness, one of the overwhelming concerns is the dependency on others.  Somedays its mandatory, and its a strange feeling to need someone to make you breakfast, or go to the grocery store, or take your dog outside, or unload your dishwasher.  And I am so blessed that I have a large group of people, that go out of their way to help me do these things.  But today, I felt grateful that I completed it on my own.

My dad, a saint among us mortals, called me at least 10 times from the Packer game, when they got there, waiting in line to get in, when they got in, at half time, walking back, when they got back to the car, you see the pattern here - but it meant the world to me, because it made the day not so scary.

Tonight, was Andy Rooney's last regular segment on 60 minutes, and he said -

- People have often told me I said the things they’re thinking themselves, I probably haven’t said anything here that you didn’t already know or have already thought, that’s what a writer does, there aren’t too many original thoughts in the world – a writer’s job is to tell the truth – I believe that if all the truths were known about everything in the world, it would be a better place to live – 

thanks andy, often what is a block for me as a writer is wondering if i have any original thoughts, now i won't spend much time fussing over that, because writing the truth, that i can do.

Like Flossing Teeth

So its been awhile to say the least, not sure where to begin.  Then I am reminded of the last time I went to the dentist, and was frustrated, b/c despite flossing, my gums were bleeding.  The hygienist said - "your probably a pop flosser", a what? " a pop flosser, you pop it in and out but you need to really push all the way to the top of the gums..." hmmm - she was right, despite my efforts, i was definately a pop flosser, dually noted.  And then she said, most people stop flossing for awhile, and the more days that go on that they don't they feel like they failed and for some reason keep not flossing - remember any day is the best day to start again - hmmm - words of wisdom from the dentists office.

and so it has been with this blog, a bit like flossing, i got off the train, and most nights would think of getting back on, but not know how to begin again, so i write in my head, what i would have said.  And the longer i was off, the harder it seemed to get on  - today - I am getting back on the train.  I think it was something sommeone said to me today, the frustrating lack of understanding this illness carries.  I had a really great night last night - it had been an awful day, on top of the CFS, i am fighting a cold  - of course its fall, the first and hoping- but doubting the last.  I wanted to help my sister run some errands, but knew i couldn't, so at least i headed over to her house to hang with the kids.  But all day  I was figuring out how was I going to meet up with my high school friends in the evening, I'm a bit dizzy, weak, unsteady, hurt everywhere, not sure i can pull it together.

Laying on the sofa, with the chills, the venue has been decided.  Luckily, I have two Packer tickets that need delivering, b/c without that feeling of responsibility, i know i will hang in the towel.  Eat, sit up, breathe.  Okay, shower, rest, drink something, sit up in bed.  I think I can do this - lipstick.  Luckily, the evening is always the best for me.  Long story short, I make it there, and I have said it before, fun is never over-rated.  Just seeing people that have known me for 20 plus years, it takes me out of this current life.  It transports me back to a time where I could always rally, being around this group, this energy of friendship, lifts me up.  And the half hour i thought i could only make turns into two.  And for the first time, in this extended network, when my friend asks how i am doing, i don't lie, i have ended the denial stage and someone listens, truly listens, and it is the greatest gift anyone can give.

So when i make it home, the adrenalin wears offs, and i crash into bed, all the crappy symptoms are still there, but a little bit of their power was taken away tonight.  Because in spite of it, I got two hours of freedom - and it was priceless.  So this late morning, when I get a few comments like,  "9:30am and you just got up?"  "are you working yet? no? well I would be fatigued if I didn't work!" and the comments, despite coming from a loving heart, feel like a dagger - its okay - because last night, someone looked me in the eye, and saw me, someone who knows who I use to be - he heard me and understood through the smile that this isn't the easiest of fights and I am doing my very best.

It teaches me, hope is not always about getting better, sometimes just being understood is enough, so I say thank you, to my dear friend - the one that made VanHalen cubes in plastics class, the one whom did many ride alongs in a certain black mercury convertible hunting for flying hub caps, the one whom took me for two jimmy sundaes the night before my wisdom teeth were pulled, the one that shared with me when he first knew he had found his wife...this one is for you. Last night you gave me hope.