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.

teaspoon of sugar...

 My sister watched Mary Poppins so many times that our VCR tape finally broke; I couldn't have been more relieved.  Especially the depressing scene with the feed the bird song even as a young child I saw the pain in that song.  However, wouldn't it be nice if a teaspoon of sugar would solve all of our problems.  Perhaps it makes the medicine go down, if only medicine could fix all of our ills.

dancing penguins...

This holiday has been leaps and bounds of progress but like Mary Poppins it felt a bit like jumping into the chalk drawings that offer a temporary escape and then reality comes back and you realize you have made strides but there is a long way to go.  I am so grateful that this year I was so much better than last, but it is always hard when all of a sudden you can't really get out of bed and you close your eyes and wish you could jump through sidewalk drawings in the street and stay a bit longer.  Or just take that big carpet bag with everything you needed and fly away.

jumping

Proud...

The Holidays are a super-sized version of where you are at in your life sometimes.  And sometimes all it takes is four little words to make it all worth it..."I am proud of you..." okay, I guess that was five!  I have an amazing family and support group, and that has all expanded since I decided to get out from under the "shame" or "insecurities" of this illness and began to start living truthfully.  Living honestly rather than pretending I was my old self and masquerading my way throughout the day.  It's scary and hard to come to terms with this new life, but the energy it was taking to pretend it didn't exist I have now found was even more difficult.

I went to my Aunt and Uncle's for dinner this evening, and last year a complicated stressful situation of dodging foods I couldn't eat was a simple fix...I brought my own food...and you know what...no one cared!  That is the thing about our own lives, we tend to expand the impact of what we are dealing with in our mind, and when we step back and are honest about what our limitations are and what our fears or anxieties are you have begun to strip away a bit of the power those little voices of doubt have over you.

This year, I changed my flight at the last minute due to my health being in a poor place on Thursday and a blizzard that was impacting our airport.  I then preceded to get a treatment on both Friday and because my doctor is so dedicated and wanted to make sure I left as strong as possible on Saturday.  From the treatment I raced home, finished packing, made some food and got to the airport.  At the airport I found someone to help me carry some of my things and Sophie and I did the oh so fun security etc...I got in to Milwaukee at 12 am...and headed home.  And for the past three days since I have been home I hosted at my house twice and went to my parents and my aunt and uncle's .... I participated in Christmas.  While I was at my parent's house my 4 year old niece spontaneously came up to me while I was alone in our den, and she climbed on my lap, wrapped her arms around me and said, "Heather, I missed you when you were in Arizona." And it broke my heart a bit; yet made the sacrifice all the more worth it.  Because I was present in that moment, and my treatments though took away time give me quality.

While at our big family gathering one of my Uncles came up to me and said those four words..."I am proud of you..." "I am proud of you for being here..." and for all of you CFS'ers or anyone that sometimes feels like whatever they are going through no one is paying attention...there is no greater gift one can give than that of acknowledgement.

Somehow when we get older it seems that those words that we hear so much as a child...I am proud of you...begin to disappear.  You are expected to do things, behave a certain way and be an "adult."  However, maybe that is where a bit of our compassion gets lost without even knowing it and being told it tonight, I will remember once again...words can hurt and words can heal.

Happy Holidays. Photo courtesy of the 4 year old! 

December 24th 2012

Addendum...
I logged on to AOL and saw this clip and it was exactly what I was trying to say...but came from Nobel Laureate and Holocaust survivor Elie Weisel....Friendship is a Religion from his new book Open Heart

Sophia

You writing about me???

I was a little scared two nights ago.  It was well after midnight, I hadn't been able to sleep, not been feeling well and have trepidation as always if I will head out of Phoenix feeling better than I came.  And then someone said to me, "where is Sophie?" and I said that she's "lying right up against my legs..." and suddenly I didn't feel so overwhelmed anymore.  I get more comments than anything regarding this loveable and very intuitive dog.  For example, in the mornings if I am not feeling well, even if I go downstairs to get juice she will not follow me.  When I am in bed and in a bad place and someone comes to help and take her outside I need to physically remove her because she won't leave.  And now, she has begun to brighten up the days at my appointments, often accompanying me to them.

I said I was concerned about being in Phoenix alone for the first time, well alone couldn't have been further from the truth.  I have an amazing group of people helping me and though difficult to have others constantly in your space; I have learned to find a way to become more comfortable feeling sick while others are around me.  I am lucky that I am leaving on a high note, this MORNING, I actually ran an errand before my appointment.  I can not tell you how monumental that is, normally getting out of the house at 1pm for my 1:30 pm appointment takes everything in me.  I am grateful after many ups and downs I appear to be returning to snowy Milwaukee for the Holidays on an up swing.

Here is some pics for all you Sophie lovers of my baby right by my side. xo H.

Looking for Dr. D

Hmm...still waiting

Hanging While I Rest

Laying Down keeping me company with IV

I will not move...

Yep I am sitting as close as possible...know we've had a long day!

morning

I manage to get out of bed this morning and take Sophie outside before Kristine gets here to help me.  I get down the stairs which feels like a monumental accomplishment.  My body hurts and feels weak.  We walk outside to the crisp morning air that smells oddly of sweet deteregent and it takes me by surprise.  Across the driveway as Sophie avoids the deep grooves formed by the tile pattern like the little dog from As Good As it Gets.  We continue past the mailboxes, cross the main circular drive and get to the grass.  I am robotic in getting this done my brain focused only on getting back inside; then I look up.  Across the way out of an identical looking condo is a woman my age bouncing towards her car that is on the main drive.  Giving the impression that she forgot something and just ran in and out to continue on with her morning and doesn't want to be late.  Her hair is dark brown, pulled back but clearly washed and blown dried, from a distance make-up deftly applied.  She is dressed smartly and well put together, for this cool Phoenix morning.  A pretty Merlot colored sweater, skinny jeans and black boots.  She is confident in her stride back to the waiting vehicle...a purpose.  I glance at her briefly and between her movements, her build, her style, I look at her with envy and think to myself...that use to be you.  I breathe that thought in and mechanically, carefully focused Sophie and I turn back towards the house and somehow make it back up the stairs.

hmm...

think we can climb this?