Going Dark...

Last Rose Standing

The past month there has been a flurry of activity in the ME/CFS world with two documentaries gaining much momentum and press.  I was touched and appreciate all the FB shares, donations, and anyone who took the time to understand this quite misunderstood illness.  On the flip side I was surprised to find myself quite depressed and overwhelmed by the entire experience.  First, it forced me again to glimpse into the lives of so many individuals that are bound by this thread of uncertainty and pain.  It showed me once again that I am not crazy and I am not alone, however it meant again I am with a group that I would prefer to be outside looking in rather than the other way around.  It also made me feel quite inadequate, how are others making such a contribution when I feel that mine is so limited?  It forced me to look at myself and wonder what role did I play in not always having the emotional support I need by being quiet and silent, stoic and dismissive?  Have I become someone resigned to dismiss themselves?  And so with all those questions flurrying through a tired body and tired brain I have found the desire to go dark.  To withdraw and go within, like a turtle retreating to it's shell or a bear taking a long winter nap, I have found I need to be still and not worry about what is being accomplished, that I am enough yet I need to take some time to feel at peace with that statement.

I talked to my doctor the other day about how this illness has really taken all of my assets all the things I gained self worth from I feel have been stripped.  I have always been an extravert, I crave other people's experiences and being a part of them.  Now all I do is watch.  I feel a true part of very little.  At times I feel I am more focused on other's lives because, let's face it I have the time and it becomes the only way I even feel valuable.  I don't know if one can truly understand the isolation of this illness.  It's a harsh reality but there is no way to sugar coat that at times it feels as if all the little pieces that make you who you are begin to fall away and the puzzle that put you together is filled with holes.

Last month I went to the third floor of Nordstrom's where the Cafe is and I found my old table.  My favorite spot where to the right you can see out the window and the left see people walking in, and I just thought where did it all go?  I felt so happy to just be there, even though that is all I had done got there and sat.  I just sat with my thoughts and my bottle of water and coke in my purse and enjoyed what use to be.  I thought how this use to be one of my many "places" where I enjoyed spending time.  Now my "places" are limited and I didn't realize how deeply I ached for a simple trip to the mall where I use to eat the chicken pot pie and get a cookie, now none of which I can touch.  I sat and wondered will the ease of daily rituals ever be my life again?  And if not, just being here, knowing so many suffering with this illness could not accomplish this...

Last week I got quite ill again, and I really under-reacted to a serious condition.  I guess I have been so use to feeling overwhelmed and sick I just slipped away or didn't care.  On the second night after things got back in control I was in bed and I was so still.  Inwardly so still and I took inventory.  I thought to myself if I don't wake up tomorrow I could be happy.  I could be happy that I have left very little unsaid, left very few if any enemies, and I am not in pain, I am quiet.  There is a stillness to an acute illness where everything shuts down and you have nothing, not an atom of energy for anything else except the necessities.  Life becomes quiet and it is a beautiful and terrifying place.  I am so use to fighting, to removing myself from my body of symptoms, it was foreign to stop fighting and go inward and be at peace with this body I have often felt so betrayed by. I was thankful for all the work it has done...yet ache for the day I could run or walk and see muscle tone...or please oh please get rid of this "muffin top" tummy that is so foreign to me...ahh the joys of vanity!

Today as I was lying in bed with eyes closed, I thought of how lucky I am because the one thing I know is that I am loved.  I am loved and cared for by those I pay and those I don't.  People always seem to go the extra mille for me.  I heard Robin Robert's say she hopes she is different after her illness, and I have always said I didn't need to get so sick to understand the fragility and joys of life, but I understand the hope to be different.  The hope that when freed from this illness or living within it you can take this experience and transform it.  Transform it into something that you couldn't have imagined or dreamed and it is then all worth it.

We lost Nelson Mandela this month and I thought of how he never knew if or when he would walk towards freedom but he prepared anyways.  What an extraordinary lesson to be prepared for a life after that one would not dare dream of while confined.  We often seem to say, "I will when..." and yet we all know when isn't a certainly, only now is.  So for now I think it best I go into a little cocoon and stop reaching out but prepare for within, with the hopes that this little caterpillar may one day have her dance as a butterfly. 

Wishing everyone health, happiness and love this winter season, I will see you in the spring. 

How did I not know about Aloe Blacc...
if you love music hit the link
"Wake Me Up"

Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start

They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me

So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don't have any plans

Wish that I could stay forever this young
Not afraid to close my eyes
Life's a game made for everyone
And love is the prize

So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

Didn't know I was lost
I didn't know I was lost
I didn't know I was lost
I didn't know 

Never Never Never...

Got it.

It's the third Never that makes it so different, I don't know when or precisely why Winston Churchill had that saying, "Never, never, never give up" but I do know the third never makes all the difference.  I could ask my uncle, I bet he knows.  The last few weeks really that is all I have wanted to do, give up.  But I don't even really know what giving up looks like when you don't really have a goal.  It's the food thing.  I have gotten use to the fatigue, the rapid heart beats for simple tasks, the body aches that have greatly diminished, but it's the damn food.  The phrase doesn't really help me out to much when that's all I have done, is give up food.

Food for the soul, I remember those days.  People use to laugh at all I could eat, and I was never shy at a dinner party.  My goodness if I didn't have so many Jewish friends I think I may have considered converting after discovering that their Holidays are filled with the most amazing food, latkes, brisket, liver pate with little pickles and eggs on them, matzo ball soup, alright you can have your gefilte fish.  It's one of my first memories of having difficulty eating something, I was at my friend Sandy's and I normally eat latkes faster than she could serve and I noticed I felt a bit funny after having one.  So the next time I thought since I had a bit of trouble with some apples it was the applesauce, no big deal what's better than sour cream?  But then it happened again, that was my first little hint that soon potatoes and apples would be off the menu.

It is daunting to not be able to eat with ease and pleasure anymore.  And now as I have hit the 40 and fabulous I seem to be in possession of what ironically is called a "muffin top"...so combining my restrictions on food and my restrictions on exercising I fear that may be here to stay for awhile.  The caged bird, once again, I know why you sing.

So on days when I do feel like giving up, giving up writing, giving up trying, giving up really everything I think of the third never...and somehow, someway the third one helps me carry on.  I figure someone who decided the third one was necessary must have been in pretty dire straits...and I will be googling Mr. Churchill the second I publish this post and gain some knowledge that I clearly left behind...or call my Uncle for the cliff notes.

My Wild...

Into My Wild
"Will you take me as I am?  Will You?
Joni Mitchell
Quote from Into the Wild - By Cheryl Strayed

As I looked out over the golf course, my eyes seeing the tiny speckled stars I have become accustomed to, seeing the world as it's parts rather than their whole; separated, detached, moving, unsteady as my body so often feels.  I leaned against the two chairs and as my gaze drifted towards the foursome on the putting green I wondered if I would ever get to experience this world as a healthy person again?  That thought struck me without malice or jealousy, anger or bitterness and that made the question not feel so bad after all.

I was simultaneously cloaked in comfort in knowing at least their was a time I had.  I had been given the opportunity to live a healthy life much longer than many and I was still here.  I vowed once again with shaky determination to do my best to stop fighting the current of reality and find a way to create and mold this new experience as that, a "new" experience of what it takes to live without so many pleasures and eases I was once granted and dove into.  Trying again to find what I have gained in what often only feels an endless pit of what I have lost.  Looking at it as that, an experience with value and merit.  It is my experience, one I push and fight and get so angry at the constant unknown that I have separated "myself" from this illness.  I want nothing to do with it yet in that at times I then want nothing to do with myself.  I keep waiting and waiting for this to get better and begin my life again, and yet this is my life and somehow I have purposely forgotten that.

This week my experiences included two trips to Mayo Clinic for a minor test that turned out fine.  Yet two days of three flights of stairs due to my claustrophobia had my legs feeling like they had run a marathon.  An injection into my lymph nodes into my groin, the 10th I have had.  One blood treatment, one blood treatment that wouldn't work because I was too dehydrated.  An IV push of minerals that made my face flush and my body hot and yet I was tethered to the needle so my doctor and I discussed the "Good Wife" to distract myself.  My experiences included my 500th ham sandwich and mundane spaghetti with meat sauce.  A trip to the pool that I prepared for with the precision of an day long outing, yet I was in the pool no more than ten minutes and paid for it with achy exhaustion the next day.  A moment where I couldn't take it anymore, couldn't take one more second of every little thing being so hard so I took a 1mg of Xanax to let my body take a break from it all and so grateful that I am not an addictive personality that I can have those moments of repreive.  And a head so foggy at times I wonder if I am really talking...

I have done all this while finally having enough energy to begin reading, Wild, From Lost to Found on the Pacific Crest Trail by Cheryl Strayed.  I thought in reading it I would feel more lost and alone myself, so wishing that I could do something drastic and life changing to "change" my life...but those of us with a Chronic Illness or locked in circumstances beyond our control know that is not a choice we have.  In my "old" life it was.  That's exactly what I would do, I would "escape" to a different scenery, and oh how thankful I am that I did it then when I can't do it now.  But in fact it was this book and her words that made me feel more not less impressed with myself.  Her struggles on that Trail are the struggles someone with CFS deals with every day, yet unfortunately we can't end our journey after 1000 miles.

In her journey of "packing" her "monster" pack, reminded me of how I carefully "packed" my purse and accessorized myself for courage as I took off for the pool.  Her aching body and tired limbs I know so well, yet unfortunately as her journey progresses she gets to see her muscles and body become increasingly stronger, but without her strength of mind she wouldn't have gotten that far.  She does it alone, and despite strangers and friends that help along the way or helped her get to the idea of the trail, illness as I said many times at the end of the day is yours alone.

My confidence has wained that I will ever be able to "prove" myself in such a daunting task, and yet who are we kidding I wouldn't choose the Pacific Coast Trail to do it, maybe a "trek" along the promenade in Nice, but somehow in reading this story is what brought me to that thought in my head, I may not ever relish in this world as what use to feel whole but that doesn't mean I am broken.  I must learn to take myself as I am...as I am right now not as I hope to be.  And like Cheryl, my path has strayed, a diversion I would never wish on anyone but it' is my diversion and I will find my way.

Stray.."or go beyond established limits.."

View

I am so lucky to have such a beautiful view...amazing this was all in one evening...

What the Fox Says...

Adventures of an Incurable Optimist
Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.
Michael J. Fox

I stumbled through Michael J. Fox's return to television where we were continually taught the "lesson" and acceptance that we have no control, and life gets better when we acknowledge such lesson.  Over and over and over again in a quirky thirty minute poorly written sit com the actor kept reminding us that we can't control what always happens in life but we can control how we handle it...got it, got it loud and clear.  The thing is, on an interview Michael J. Fox discussed how he realized he could continue to work as an actor as long as that actor had Parkinson's.  This is the sad truth when you take off those rosy colored "you can't control life just go with it" glasses, most people aren't actors and if they get Parkinson's they can't re-write their career into a part that does.  This ability to care for and provide for your family or self is one of the most devastating parts of chronic illness, and for the majority of sufferers the illness robs the ability to continue what brought us some sense of control and security, work.

 

I can't always control my body the way I want to, and
I can't control when I feel good or when I don't. I can control how clear my mind is.
And I can control how willing I am to step up if somebody needs me.
Michael J. Fox

That is how I feel lately, such loss of control with illness, and more importantly the inability to wonder if necessary could you possibly support yourself?  Last week I found out my regular help was giving me her two weeks notice due to some family concerns.  I was paralyzed in fear.  The immediate problem was magnified that I had the dates of her return from her vacation mixed up, so my parents had just left, my best friend was out of town for another week, my other dear friend broke her leg and is bed ridden, all my "people" except one were gone...and I couldn't do it without them.  COULD NOT.  Not, would not, not sure, not oh it will be difficult, no, could not period.  That is a feeling that will drop you to your knees and feel like a lost child in the middle of a city.  The reality that my mom needed to turn around and fly back out to Phoenix is a big mirror of loss of control.

Looking Up - Amazon Link

That email of resignation exploded all my fears with this illness, the dependency.  I never can get myself far removed from the financial constraints this illness took on, especially the help.  So it was a double edge sword, not only loosing the person I trusted and that I felt emotionally comfortable with, but it was getting hit with a Mack Truck of reality how much I required and needed such help.  I have been forced to let go of much control and have learned many good lessons out of it's necessity.  However, unlike Mr. Fox, we can't insert ourselves into a new script that fits our new circumstances.  We re-write the script, and some days we write it better than others.  However, some if it must lie on the cutting room floor, with only hopes and dreams of a re-write.

Now please, do not for a moment think I am a MJF hater.  Quite the opposite, I actually sat through both half hour episodes of misery out of reverence for him.  I even cringed wondering if he was cringing too at the final result, here I am feeling bad for him, because he is so much better than that show.  

However, as all of us know suffering traumatic illnesses acute or chronic sometimes the "lesson" from someone in a different stratosphere of wealth and opportunities in the career he loves just feels a bit forced.  He taught me much more by teaching nothing in his guest episodes of the Good Wife, he showed up.  Glennon from Momastery uses that term a lot...he SHOWED UP.  That was the vulnerable first step exposing himself as an actor playing a lawyer so shrewdly.  Showing how he made his lemonade out of lemons.  He taught me more in his quest for Happiness by traveling to a remote village and again experiencing the unknown.  But that half hour of "isn't it just aw shucks I have Parkinson's but look how I can't control that and am still HAPPY" just made me depressed.

I felt robbed of the opportunity for MJF to make something real, and funny and inspiring.  The viewers lost the arc of the journey and they fast forwarded to this "inspiring" end, but it left me feeling quite uninspired.  If he just wanted to be funny, just be funny.  If he wanted to not make it about Parkinson's then don't make it about Parkinson's.  The thing about the Michael J Fox show is it in my opinion had little resemblance to the truly inspirational Michael J Fox.

The last few days I have been clothed in a cape of numbness and on days like these at some point you give in.  You decide to be grateful for a sip of Coke and the crappy ham sandwich that you have eaten like a prisoner on a bland routine diet.  You find a way in all that is lost to at least wash some pans, make a batch of cookies and be grateful that you are not in bed, even though you don't feel grateful - you fake it.  You breathe.  You let go of the disciplined control of glass half full optimism and hope and you sink into the loss of control and the dark days it brings, knowing tomorrow there is always hope and today well today it's okay to not feel it.  It is in these dark moments of loss I feel a quiet kinship with Michael J. Fox and thankful that there are loads of eternal optimists to turn to on our half empty kind of days and for that I will continue to listen, learn and be grateful to what Mr. Fox says, I just probably won't tune into NBC to hear it.

Michael J. Fox Foundation Website

Beauty

Bhutan...hopefully still obtaining Gross National Happiness
I see possibilities in everything. For everything that's taken away, something of greater value has been given.
Michael J. Fox

What does the Fox say?
Check out the viral video that will make you laugh and get in your head as seen on Ellen...

LOVE

Sleeping Beauty and Ariel

My mom told me the other day she went over to my sister's before they were all headed out to dinner and she was wearing a purple and black leopard raw silk scarf of mine (side note I had a scarf phase, enough said) anyways my niece commented, "aren't you fancy fancy".  My mom replied that the scarf was actually mine and she wore it to feel a bit closer to me.  My niece then began to pretend grab all the little spots, and when my mom asked what she was doing she replied, "I'm taking all of the LOVE off of it because I miss Heather too!"  

Before I left my niece gave me those little figurines in a handmade pouch to take with me.  She told me it was so I had a toy to play with while we talked on the computer.  We only did that once and instead they have found a home in my purse and I take the LOVE from them.  

Easy...

August 1st, September 3rd and September 13th 2013 three days, three amazing days.  My old definition of an amazing day looks so far from what is now amazing I ask myself which version is truly the blessing?  Kind of one of those "things I wish I would have done before I died" type lists people tend to share...the things is with a chronic illness those "little stop and smell the roses things, well you stop.  I would love to say the simple things that get magnified are the biggest blessings, until the trade off for noticing these things is trading in your independent life for a dependent one.  I wrote this blog a few days ago and wanted to add some pics and look it over, and then yesterday happened and I read this and feel like taking the computer and chucking it across the wall and watch it shatter into pieces to match my despair last night.  However, I will "soldier on"...which that term popped into my head after reading this fabulous post by My World...  So here we go...back to the original post and tomorrow will catch you up to the reason for the Apple hitting the wall.

Amazing awe inspiring days before my health declined insisted of something "worthy" of such a title, a great concert, a fabulous party or a city or country I had never experienced and may never again.  August 1st, September 3rd and September 13th were amazing in their simplicity of an extraordinary ordinary day that had an ease that I so rarely am granted.

This illness as I have at nauseam repeated and have read over and over from other sufferers lies in the disbelief of what is really even going on.  I also notice that we struggle constantly with explaining what this illness feel like and I realized last week after the 13th came and went and the 14th landed me crashed in bed it can be described as the reverse of the beginning of a cold or flu.  Imagine when you feel a cold or flu coming on; first your head gets a bit foggy, your brain doesn't feel quite "on" and your body just isn't yourself.  Then perhaps it gets worse, and the simplest of tasks get overwhelming, so you hydrate, maybe take a few Advil and then slosh through another day.  Finally, you decide that this little invader has become too much to handle and you succumb to bed.  You may be a bit crabby than normal or needier, more sensitive of mind when the body hurts.  So you watch some movies lie around and then begin to move to the other side of the bell curve - recovery.  And all of a sudden, without much warning as a switch has been turned off you look around and take a deep breathe and you feel like your old self again.  That is the course of an acute illness, this illness takes all those feelings and you live with them every day and once in awhile like watching a movie backwards you are granted to Easyville.

August 1st and  September 3rd and 13th for me was a first class ticket to that magical land.  That ill feeling is normal and the reverse switch went off I felt like my really "old" self again.  Everyday stuff was just that, everyday stuff.  Easy.  That's the best way I can put it, everything was just simple.  Instead of swimming against the current without waking or doing anything differently the current changed and I was floating down the lazy river.

Seriously she would do better than Bethany...no offense Bethany

The most amazing best part of September 13th was the ease of heading down to my BFF's place of work.  The day prior it just slipped out of my mouth, "why don't I bring you dinner at the station?"  Even as the words came out my head was shocked that I even suggested that.  It meant driving a bit further than I have in months.  Entering the station where once behind the locked doors little magnetic security doors (which normally gets me tense) are at every turn.  The traffic which was increased by construction and a Brewer's game.  The normal list of hurdles to cross is so long they are hard to verbalize those were the obvious ones and as each one was jumped over I was truly a track star, clearing them with ease.

Yep the "oversized" not my most flattering

The worst thing about the entire day was that when we took some pics I realized my favorite "Mindy" sweatshirt made me look about 15 pounds heavier than I am!  Oh my goodness that was the worst part of the day!  My VANTIY the WORSE PART OF THE DAY...that is f'ing FANTASTIC!!!

The next day the spell vanished but I had these amazing days, three amazing days.  My doctor said she has seen this before with her chronic illness patients, that you begin to have these days so good so different than normal that you feel you dreamt it up.

I often feel like this whole thing is a altered universe dream and I am going to wake up and a version of that show "This is your Life" with some 70's game show guy in a bad tux will appear and in front of me lies...gift certificates to all my favorite restaurants that I bet have been missing me because oh have I missed them.  I use to be Queen of Take Out and Restaurants no one takes out from.  Many Bartenders in Phoenix and Milwaukee knew me not for my drink, but for my five star restaurant orders served in to containers.  Like a long lost friend that finally returned, Houston's, Bartalotta's oh have you been missed.

Then there would be this buffet of all the foods that I use to love that have been taken: apples, pears, nectarines, peas, carrots, potatoes - mashed, au gratin, baked, double baked, avocados, nuts, bananas - okay you can keep the bananas...

The next table has plane tickets to all my favorite places that I dared not dream I would visit again and some new places to discover. It just goes on and on of all the amazing things I miss and push deep down and make a conscious effort that missing is just wasted energy.  But then at the end would also be a little video of all the absolutely ordinary extraordinary days that maybe no one around me even noticed how much they filled me up.  Noticing the extraordinary in the ordinary like September 3rd 2013 being well enough to watch my niece head off to her own amazing adventure - kindergarten.

joy

And I may look back at the smorgasbord of things that I desperately have missed or more importantly missed the easiest of their attainability but then I would look at myself at 8:15 am holding a cup of coffee and giving my niece that big hug and the deliciousness of it that filled my heart not only because of the excitement of her new adventure but because I was able to make it and that buffet behind me doesn't feel so powerful anymore.

I still feel strongly that I never needed an illness to show my the specialness of moments or the joy in the everyday, but there is no way to deny how much illness heightens the intensity of the every day when the every day that normally is so hard takes it's grip off an gives you some moments of ease rather than dis-ease.

I have returned to Phoenix with additional protocols that we are trying in hopes of breaking the glass ceiling towards further progress.  I am hopeful and I am tired oh so very tired and then I count my blessings and they go much deeper than August 1st, September 3rd and September 13th and I am humbled by this journey and so grateful for all that have chosen to join me.

Enjoy...David Wilcox singing You Make it Look Easy

Made it

Falling Asleep

Last night as my head hit the pillow at 9:30pm all I thought to myself was, "you made it."  As simple as that, the morning that found yourself so tired you shook, so hungry you were nauseous, so weak you had no idea how you would get through the day, you did.  I even was able to modify the back to school shopping with my friends daughter to turn into dinner at my house, movie and what better idea than to introduce and 8 year old to the joys of online shopping.  My mom had made some pasta with meat sauce and I had broccoli and luckily some cheese to add to the top for Kate.  Kate was chit chatting and asked me if I when I was little did I have names picked out for children I might have one day.  I thought about it and said, "no, actually I never did that...maybe that was a clue that I really never was going to have children." She proceeded to tell me that she wanted three girls, named, Hope, Faith and Skylar, I commented those were very good names.  As I pulled her dinner out of the microwave, I turned to her and said, "well, I can feed a child guess I wouldn't have been all that bad as a parent." She laughed, one of the few 8 year olds I know that would get the sarcasm.

We proceeded to eat and select a movie, I was vetoed by the 1972 Rescuers and we ordered Epic.  Then I made one of those oh so helpful brownie boxes and we "shopped."  Her dad and brother and baby sister came over about an hour and a half later and we finished the movie and he drove her home. As they left, I cleaned up the kitchen, took a shower, and got into bed and those words ran through my mind like a ticker tape...you made it.  I also felt an odd sense of belonging, thinking of how many other people were going to bed with the exact same thought.

I was trying to find a good "sleeping" photo and googled "head pillow"
and found this...made me laugh...seriously...

Molehill out of a Mountain

I have this thing that I have mentioned before that I often get commonly used phrases mixed up.  Not only that but I have been known to correct someone when they have correctly said such a phrase so convinced by my incorrectness.  But I digress, it has been hard for me to write lately.  There is this great analogy about the "Spoon Theory" and if I am not too tired I will google it and insert it, and I had this whole story in my head to relate this "Spoon Theory" to the irony that I was unwillingly the  receiver of many decorative spoons throughout my childhood because I mistakenly decided to "collect" them from all the states I had traveled, which brought forth my grandma deciding that I should "collect" one from every place she had begun to travel.  Needless to say I ended up with a whole lot of spoons from a whole lot of places I had never been while my sister got some actual cool item from such place.  What I wouldn't do for a few extra of those spoons now, because all I feel like I am doing is "paying Peter to buy Paul" or seriously what is that phrase, I'm not trying to be ironic here for the sake of writing..."rob Peter to pay Paul...? is that it?  Well, that's the gist, I need more spoons....and not this one...thanks Brooke.

The Spoon Theory

I have found with this illness that in the beginning I fought so fiercely I unwillingly gave it more power than it deserved.  And this is my point, sometimes you need to make a mole hill out of a mountain or you will never make it to the top.  It is so easy to have this illness take over everything about me, but my life must be more than this illness.  Sure, would I do anything to go back to the old way, but that is not an option.  Much like the stages of grief you begin accepting and that does not mean losing hope, it just means not constantly mourning what use to be.  The person who helps me here in Wisconsin, the same person who brought me all the boxes of brownies so I wouldn't run out, asked me if I ever get bored?

And I thought about it, because on one hand I realized what an obvious question it was, and on the other hand how absurd.  I answered the best I could, "that is a healthy person question."  Yes, I use to not really get bored, I use to get frustrated or lust after all the things I could be doing rather than sitting here in my house like some sort of criminal on house arrest.  I use to think I was bored, but really I was just day dreaming and I found that took me to a very dark and lonely bitter place.

It is how I realized that yes this illness is overwhelming and exhausting and mentally challenging, but if it becomes everything, if I choose to make it bigger than it already is then I will stay in that dark and lonely bitter place.  I told a friend about an example.  My mom and I go to the same nail salon to get our toes done, we only go on the day when both Tina and Rebekah work.  I go to Tina, my mom Rebekah it happened by chance the first time and three years later it's the way it has stayed.  I don't get my toes done unless it's Tina, and this is why...The last time we went was about a month ago right after I returned from Phoenix.  I didn't feel well but I thought I could push it and seriously, it's just sitting there letting someone paint your toes.  But when we walked inside it was a slight bit warm, enough that I asked if they could turn the air down.  Then we sat in our booth and I could really tell I was beginning to feel light headed and uncomfortable.  A few years ago I would have fought with myself, the dialogue in my head would have gone something like this..."Don't be ridiculous, it's 50 minutes of someone massaging and painting your toe nails, get a grip.  Who cares that you are light headed and feel weak, how many people would be happy getting there toes done on a Wednesday afternoon instead of at work...honestly Heather toughen the F up, drink some Coke and smile and make small talk..." What I did four weeks ago was say, "Tina I really don't feel well..." and you know what she did..."Okay let's wrap this up and get you out of here..." no fuss no muss no sirens went off or bells pointing my direction.  No frenzy no rushing around like a code Blue just happened.  This is why I go to Tina, she gets it - it's toes, I didn't feel well, I leave and sit in the car and close my eyes.  Period.

Even a year ago had I done exactly the same thing a different dialogue would have taken place in the car as I sat there waiting for my mom to finish.  That dialogue would have gone like this.."you knew you didn't feel up to it, why did you even try, I can't even go get my toes done without a major incident.."  It would be easy to continue down that path of self and illness frustration, and I still do it often, but then I catch myself and remind myself that the other way is so much easier - it is the simple truth.  It is the reality, I don't feel well I need to stop.  There are plenty of days and things I miss out on when it's fine by me to get in a good cry or see this illness as the Everest it can be, but there is equal if not more opportunities to turn this mountain into a mole hill...and maybe that's what the hell that phrase means in the first place...

get what you need...

What a sweet surprise!

How we Bloom

But friendship is the breathing rose, with sweets in every fold.
- Oliver Wendell Holmes

Roses and thorns are parts of the same plant. Somehow though, some people are concerned mainly about the roses. The rose is not on the plant for more than a week, but the thorns are there forever.
Roses are teaching that the beauty of life will bloom, once you have taught yourself the lessons given by living with the thorns.” 
― Grigoris Deoudis

THE TIME CAME WHEN THE RISK IT TOOK TO REMAIN TIGHT IN THE BUD BECAME MORE PAINFUL THAN THE RISK IT TOOK TO BLOOM'
― Anais Nin

August 1, 2013

Today was a perfect day.  That is a perfect day in this new normal.  It still had a bunch of barriers and obstacles, but I managed them, and I had a sense of peace.  Normally perfect days make me a bit nervous, I guess I wouldn't be an inherently anxious person if they didn't and there in lied the beauty of this perfectly not so perfect day.

I woke up and knew it was the last day of swim lessons and multiple times opened my eyes to think there is no way in hell I can get there.  And then this little voice said, just sit up.  That is how we will see, just sit up nothing more expected manage this moment.  So that is what I did, I sat up in bed and got my bearings and then there was the whisper...hydrate.  So I followed, I didn't question, I didn't try and process all the steps in between me and these "early" lessons to see my niece and nephew, I just followed.  Back in bed, juice with salt, hydrate and wait.  I kept glancing at the clock and saw the minutes tick by and I willed myself to not be defeated.  Get dressed, brush teeth.  Okay, I have no idea who this little voice is inside my head, but again I will follow.  And now as I glanced at the clock, it was inching towards 10 am and I knew I still had a number of steps to complete but I forced myself to go back to the baby steps.  I had made chocolate chip pancakes last night for diner...shh my niece thinks I had "vegetable pancakes" so I knew I had those I just needed some protein.  So with my stool by my side I sat and made the eggs, and the clock ticked closer to ten, I just breathed.  It takes 5 minutes to get there and if you only see one minute you have succeeded.  And then there was that calming voice that told me I already succeeded because I felt good enough to try.

I made it to the last ten minutes of her lesson and stayed for the next 30 of my nephews.  It was a perfect cool summer day, and I made the mistake of sitting in the sun of a minute which brought on an intense headache.  But I moved on.  I got home with groceries my mom stopped and got for me and felt dizzy and weak but not panicked.  This will pass.  Bed.  Bed, juice, a bit of coffee and wait.  So that's what I did.  As the day went on I was lucky enough to have a visitor and a hydro-therapy treatment.  I managed to clean the kitchen with my "left to right" technique.  I start at the left side and start doing what I can and if I make it all the way to the right mission accomplished.  Again, these tiny steps that competed a process.  I had the dinner that I made the other night and was lucky enough to be cleaned up by someone else.

Then was the decision, it was 5:30 pm, what I really wanted to do was go to the pool.  Lie in this crisp non humid summer air, read a book, maybe run into someone I know...normal I craved the perfection of normal.  This is where for any one with an illness it gets tricky, you have had a really good day is it worth it?  Will you pay the price if you push too far?  And I determined the price was worth it.  I got to the pool and texted a dear friend I see very rarely on the off chance she would decide this night was also too good to pass up; despite probably a busy day at work, making dinners, picking up children, all the "normal" tough stuff of a mother.  About a half hour passed and in she walks, still wearing "professional" attire with two children in tow.  As we hugged, I said "what a nice surprise, I just texted you..." and she said, "you did?"  I repeat, a perfect day.

This is what now fills me up, these are the random surprises I don't enjoy when I am in Phoenix.  This was a perfect day, and I may pay for it tomorrow and perhaps even the next day, but today I felt like I lived rather than got by and there is no greater gift than that.  This summer it may seem to the outside that I am not that much better because my activities have perhaps decreased, but the difference no one can see is that sense of peace and being present that has eluded me for years.  I have the ability on good days to actually feel present, not count down the minutes or seconds until I can take the plaster of paris mask off my face and get to bed, my body screaming that the sounds, the conversation, the sitting up is all too much.  I have been given moments of calm in this ever changing storm, and I am so grateful for every moment of it, it is the gift that this illness put on a silver platter - the awareness of what it feels like to be well.

August 1, 2013...hope served up on a tray and I took all I could.

What we Share

Maybe tomorrow will be the day I feel like writing out all the thoughts that are in my head...maybe tomorrow.  I got a text from my aunt today that i need to tweet or tumble so she can figure out how to follow me...and I replied perhaps I am a writer because I am moody, have a bit of a block and to be honest wonder half the time it even matters...yep must be a tempermental writer of some sorts.  But more importantly than how I identify with writing this story of mine I reminded myself that it has brought me a sense of peace in sharing this experience that I hadn't had before and it was time to get back on the horse.  It also leaves you feeling raw and exposed, but that mirrors how this illness makes me feel most of the time; so at least if I am writing it I have a sense of controlling the dialogue.

Most mornings before I open my eyes I wonder how I am going to do it again.  It's an unconscious thought that awakens me and as I lie there with my eyes closed I tell myself, "just like everyone else out there that wonders for different reasons how are they going to wake up and manage a day that at times feels like it has more obstacles than openings, just like everyone else."  And then I don't feel so alone.

Yesterday was a beautiful day that I spent most of in bed.  I was crabby and envious as my entire family was at a golf outing and it has now become the norm that there is no way I would attend.  I honestly was feeling a bit sorry for myself and then angry as hell that I dared to be so careless with all the blessings I have.  Then like a yo-yo I shifted again to thinking, if I didn't have a bad crabby day once in awhile then I actually must be crazy.

So as these conflicting emotions raged through my brain as I was drifting to sleep this vivid memory of thirteen years ago washed over me.  I was transported back to Phoenix in a classroom at ASU.  I had decided to join the local "Toastmasters" group trying to plan out my future after graduating from SCNM.  Yep those were the days of the type A personality, medical school wasn't enough, I needed to be prepared if I was going to spend my days post graduation speaking to groups on the knowledge I would soon gain.  I don't remember the man's name, but I could see him vividly in his remote control wheel chair, his slurred speech, his life interrupted.  What courage to join a speaking group when he was so debilitated and had to fight for the services he required.  He had been shot while sound asleep lying in his bedroom.  One of his roommates messed with a gun and it went through the wall and sliced through his spinal cord literally shattering his dreams.

He told me he remembered this lighting bolt state of confusion and pain and nothingness.  I drifted off to sleep trying to remember the rest of his story.  Wondering where he was now, what he was doing? Did he have the help he needed...yet I can't even remember his name.

My bed is my haven, I am lucky that when I don't feel well it seems to be the wall of protection I need from this cacophony of symptoms.  And I thought of this young man sound asleep in his own safe haven and the moment that all shattered.  So this morning when I thought to myself how... I realized just like yesterday and more easily than that young man you crossed paths with thirteen years ago.

Tonight I walked over to my sister's house and watched a movie with my niece and nephew before they headed to bed.  Then I snuggled in with my niece as we read Sofia the First and Ariel accompanied by her "pretend" cats because she can't have a real one as she reminded me because I am allergic.  As she nestled under the ballerina sheets and leaf mobile I thought again of this amazing safe haven. Not the place we call home, but the people that make us feel like home. As I attempted to  slipped out she turned to me and said she could feel me leave, so "don't leave until she is perfectly still...that means I'm sleeping."  So on the second attempt as she was perfectly still and appeared asleep as I slithered out, she turned to me with a wry smile said, "Gotcha"  And again my mind drifted to that young man now 13 years older and hoped for him he was blessed with these moments; these perfect little moments tucked into the same day you wondered how you were going to do it again.

 From the poem The Invitation by Oriah Mountain Dreamer

It doesn't interest me to know where you live or how much money you have. 

I want to know if you can get up after a night of grief and despair 

weary and bruised to the bone and do what needs to be done to feed the children.

LOL

I haven't really laughed, big old belly laugh in awhile, well frankly I can't remember when I have.  I have smiled, enjoyed people's company, chuckled, I did however today, tears in all when I received this email...

First, a bit of back story...I had a Bosch fancy dancy front loader washer and dryer and long story short it was the worst.  It lies to you...it keeps clothes soaking wet with no spin only cycle...it jumps...it takes days to do laundry.  So before I returned from Phoenix I asked my parents to please get rid of it and get me the most back to basic washer and dryer possible and they graciously obliged.

Part two, my aunt was determined that this sleek pretty looking set would be fantastic in her laundry room....luckily they still have the old ones in the garage...I may even have to dig up the old previous emails dedicated to this oh so expensive awful machine...so thank you for my belly laugh today, for two minutes it all slipped away.

Enjoy...

Bosch Accords Signed this Week

"Local grandmother, (my aunt), has signed peace accords with the German chancellor and the Bosch laundry ambassador. She stated that she had come to terms with the dryer, although she made it clear before signing the documents that several cycles were unusable. The German chancellor expressed encouragement regarding the ongoing peace talks stating that they were making efforts to address Mrs. Kelly's repeated demands, regarding the issue with spin cycles of the wash machine. Although the German chancellor sounded optimistic, Mrs. K reiterated that no further peace accords would be signed, until rug spinning issues were identified and resolved."

Psych 101

All I ever needed to know about living with CFS/ME I learned in Psych 101...it forces you to revert back and stay stuck at the bottom of the pyramid.

It becomes your personal Sphinx
What it's guarding against you have no idea
 because it feels more like it is blocking your freedom than protecting it

Kickstarter Project...

Please check out the following Kickstarter Project from a ME/CFS patient and now documentary filmaker.

ME/CFS Documentary

http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine?ref=card

Sunday reading...

Just a little relaxing on a Sunday afternoon...

Luck

I miss my friends.

How lucky are those that find true friends
I am one of the lucky ones

Tonight via Facetime it shook me to the core of how much this illness has cost me.   And sometimes it's just too much.  I cling to the beauty that I am lucky to have had so much to lose;  I will tell you one thing I have learned, I never needed to get ill to understand this fact.  I have learned a lot about myself and how to push on when you think you can't do it another second.  I have learned what it feels like to be isolated and compassion for those that have never known any other way.  But I never needed to learn what I had to lose, and for anyone out there waiting for some big event to show you, I have learned to find a place in my heart for you that it took you so long.

Crafty

The Deluxe Art kit is going back....sharpies and crayons are about as crafty as I get.

Like those Make-Up Kits with a whole lot of too much

It has been a complicated and challenging four weeks.  The most difficult was once again accepting the reality that I could go from walking into my BFF's daughter's first communion and being treated like the "Aunt" rock star jet setting for four days for the special occasion and then feeling like it was all a mirage.  Participating in life for a bit and then your fairy godmother turned into the mean queen and your 3 wishes disappear; I returned from that high to Phoenix with soul crushing fatigue.  The mind game of believing you had pulled this whole damn thing off and then then falling into a sink hole just when you thought you were walking on solid ground.

Right now I don't feel like going into the details.  But this event reminded me of what it feels like to be desperate with this illness.  I called my parents at noon Milwaukee time and asked my mom to get on the 5pm flight to Phoenix.  I just couldn't do this without 24 hour help.  And she was here.  And it made all the difference.  It's a humbling and frightening feeling not being able to care for yourself.  I am doing better now, my mom stayed for three weeks and left this past Friday.  My doctor is out of town this week and wanted me here longer and see how I hold up without a week of treatments.

I am too tired to do much of anything, and the days get very long.  A friend suggested I do a craft, luckily he prefaced that statement with, "I know it sounds silly, but what about some sort of craft, knitting..." that's about as far as he got before I said, "have you met me?"  However, I had a few weeks back done a "craft" photo book for my niece as a present for missing pre-school graduation.  Then a bit of nostalgia brought me back to the special days my Aunt would take me to the needlework store and patiently try to share with me the joy of counted cross stitch, it didn't work.  There never was a craft that I finished.  My cousin Katie and I had a bet who could finish one of those 70's loop yarn projects where you got the little tool and the mesh was color coated, Katie finished a Panda pillow, God only knows what happened to mine.  My sister took up knitting in second grade, even made me a sweater, and this was way before the Hollywood knitting craze.  Me, not interested, not at all.

However, despite the idea feeling as rousing as being a 40 year old at a nursing home;  I found myself on Amazon searching out craft projects and with one click had ordered the above box and some canvases.

Yesterday I never left bed.  But today I felt a bit stronger, and that "deluxe craft set" was way too overwhelming, so I stuck to crayons and some sharpies, and I have to say it wasn't that bad.  It made me laugh because of the absolute lunacy that on a Tuesday afternoon I was doing an "art" project, made more bearable that Sex in the City re-runs were on in the background.  Then I laughed more picturing my friends and I in a nursing home listening to some lame 20 year old shout out where to glue your tissue paper as the soundtrack of our hay day would be playing v/s the big bands and Betty Davis movies that I would hear when I sat with my grandma at those equally soul crushing institutions.

If nothing else, it gave me some humor back in this mostly overwhelming condition.  It forced me to adjust what felt like success for a day and be grateful that I was even downstairs rather than the confines of my pretty bedroom.  Who knows...maybe I will take up knitting next...not a Fucking chance in Hell.  I'm down, but I'm not out...

Can you guess which is my Work of Art

Project 2...Niece just informed me to add some people on the mountain...
and maybe some birds and a cactus....will do...

Signed sealed to be delivered

Sophie...really? can we fit any more on this bed

The Side I am not Sleeping On - 

The Side I am Sleeping On -

Everything Within Reach

Me too Soph...I'm Beat...

Long Haul

Be Kind Whenever Possible ~ It is always Possible
Dalai Lama

This was taken last spring, I am looking forward to walking back to that bench in the woods at the park near my house.  I have been writing a lot in my head, at night, in bed.  Everything falls away sometimes with illness.  Eat, sleep, get to doctor and do it all over again.  Very little else matters, your head has no room for other thoughts or plans or decisions.  Last night I looked over at this faithful companion and thought what an amazing gift, the only thing she needs is me exactly how I am in this moment.  And that is all I have to give.

Want to meet...

I like this woman...I like her a lot and I have never met her, probably never will, but it doesn't matter, her brain is working faster than mine is right now and I like anyone who is wicked smart..

Check out her blog...thank you Mary Schweitzer, thank you very much.

Slightly Alive

Hair

My hair is beginning to fall out and I am scared.  It's one of those things that at first you kind of ignore or make excuses for such as..."well it's always in a pony tail.."  Well my hair has been firmly in a pony tale for about the last 5 years and I don't remember taking a shower and putting a handful of  hair on the edge of the shower so it doesn't clog the drain.  I don't ever remember the waste basket besides my bed all of a sudden accumulating hair that comes out when I run my fingers through it.  Or the new routine of feeling like a need a shower to remove the strands of hair that or lingering on my arms, legs and shoulders.  It's these things that you don't ever remember even crossing your mind.  And then it's the careful examination in front of the mirror and seeing these little areas of a hairline that use to be different.

I don't say this about most of my features, but I love my hair.  I became devastated about fourteen years ago when I became allergic to hair dye.  It took about a year to figure it out.  I kept breaking out in hives around special occasions.  People would say, well maybe you are nervous to be in your cousin's wedding...no disrespect but why in the hell would I be nervous, I'm not the one getting married.  And then the fateful day when I got a deep deep red color and 6 hours after I got home my neck was so swollen in hives that I took so much Benadryl I was knocked out cold.  When in the morning I still was swollen, I called the salon and said, "are people allergic to hair dye?" and got a resounding "yes."  No fucking way!!!!  Had I known what was coming down the pipe line this would have been a blip, but at the time I LOVED dying my hair.  I tried for awhile all different types, but after landing in Prednisone land for over 2 weeks a wise decision was made that this was the end of the road.  One of the up sides is that because I no longer dyed my hair I have Locks of Loved it twice.

Luckily, I have pretty hair.  The color is really nice, and somehow at 41 so far I haven't gone gray...where is the wood I can knock on.  Now in the grand scheme of things this hair dye thing, though I still miss those fresh shiny locks that seem to wake up your face, it's one more thing that just moved way down on the list.  But this, please no.

Good Hair Day - November 2012

I was okay until I was going through old pictures while putting together a picture book for my niece and saw some photos from this past Thanksgiving, and my friend Jami even said, there is no denying your hair isn't the same.  The good news/ bad news is, I thought it would make me cry.  But it hasn't, and that in it's own way shows me what I have learned to live with or I should say without.  It's hair.

I talked to my doctor briefly about it, and she said she was surprised I hadn't lost more sooner.  So, we will see.  I am ever hopeful it's a temporary situation from the exhaustion of the treatments.  I have three more treatment days left and then the summer off.  So we are working on the plan to "re-build."  If you had given me a list 8 years ago of all that would be taken away from me I would hand you it right back and say give me a bottle of pills and a cozy bed and it's been a good ride.  And then you come to find what you are really made of.