life feels so far away…

…from what I expected it to be like right now. I am only 33, but I expected to be singing and performing all over the world by now. That idea has been put on a serious hold for now. I try not to think about it, because when I do I get really upset and crazy. Physically, I am limited. Writing is the only thing I can do now that I do love. But not being able to sing and perform is really killing me.

A few months ago I popped on my ipod…I forget to listen to music within the chaos of each day; keeping up with work, and making it home and remembering I need to eat. Anyway, on this night I put on Corteo, a Cirque du Soleil show I really like, and started listening . I remembered how badly I still want to audition for a singing role in a Cirque show. I have just never gotten around to it.

So I glance at the website and see about new job postings for Cirque, and read the current audition notice. One phrase cut me up into little, awful, disappointed pieces; must be in good physical condition. I cried right then…realizing that for now, I really can’t even hope to audition. I guess I could try and I could fake it, and try to make it work….an audition really never hurt anyone. But now I have no choice but to live in this body, and deal with it. A Cirque du Soleil audition is probably not in my future, currently, and that really hurts deep deep within me.

I feel so distant from the life I intended to live. I know plans and expectations and lives change. And that is the nature of existence. But this burning desire to sing will consume me…will eat me alive, and someday I will not even recognize myself, I think.

I must find a way to sing, to do it…to perform and to create. I will go mad without it, I think. I get together with a friend every few weeks to work on her music. She writes lyrics and tunes, and I bring it together with the piano. I do it with her, why can’t I write and sing myself.

“Tis a puzzlement”, to quote the king, in the movie musical King and I. I will mull this over a bit more, and hopefully I will find a way to make singing an important part of my everyday living, despite my current state of health and the pain I exist with. I will find a way.

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Changing expectations

 

So I have not been good at blogging lately, I have not been good at anything…working, cooking, laundry, taking care of those I love.  I have barely kept my head above water.  But I keep trying.  And I guess that is the point…I keep going, no matter the weather (speaking of my bodily ills).

This week I may have been trying too hard.  I planned to cook dinner in a half hour space between commuting home from work, and teaching a voice lesson at a studio 5 minutes away from home.  I just wanted to help out and make my husband dinner for once…I tend to leave him to cheese tortillas and cereal, and I wanted to try harder….that was the goal.  But when all was said and done, he was upset that I had pushed to get it all done.  Now that I look at it, I am not sure why it became so imperative for me to get dinner done in less than 30 minutes.  He reminded me that it was not a requirement for me to cook dinner every night…he does not expect it.  But I wish that I could.

It was like I had a vendetta against my body that night. I was going to do what I felt I needed to do, regardless of how I felt, or the fact that I had no real time. KD truly understands extent of my pain, better than I do, especially at the end of the day.  He is always patient with me, and content to do the things he needs to do to help me be at my best for work.

I just wish that work was not the only thing I did well.  I manage to work a normal week and considering my chronic pain this is amazing; I know so many people who cannot even work part-time…I am a lucky girl.  However, what upsets me is that the minute I arrive home, most nights, I am done for the day.  I have no energy to even wash my face  before bed, let alone do chores, or other things that I might want to do.  But I must be thankful that I can hold down a full time job and bring in an income for my family. I am very grateful for this.

So despite my complaints about my seemingly abbreviated life, my determination is to be as positive as I can about all of it! But also I need to set realistic expectations for myself, and not push it when I know I should not.   The chronic overachiever that I am needs to back off.

Float On By

A couple days since I have had the wherewithal to write, and I am finding that I regret not chronicling what I have been going through, if only to examine it so I can find this suffering’s purpose or the good within it.

But maybe that is the problem with me.  I tend to cling to what happens to me and around me, to roll it over and over to try to make sense of it all.  If I have learned anything from that book I am reading, it is to just let it all float by.  So today this is all I will write, because of the fear that a long post would be filled with crazy angsty crap full of excuses.  I think I will use writing more to just mark the day.  So today I mark this day full of insanity, but I let it float on by, for now.

How To Be Sick?

I continue to read Toni Bernhard’s new book, which I talked about a couple days ago.  I am learning a lot for sure, but I am overwhelmed with it all today.  So many good practices, but on a day when I feel sicker, I am not really sure how to be sick.

I worked 6 days straight..again…I am not supposed to be working that many days, but I did, 2 weeks in a row. But today I am off, and being off means my body decides to crash completely.  I always have big plans for my days off. More often than I wish to admit a day off ends up being time for recovery.  Today I feel like I have the flu, body-wise, achy and weird eye feeling like I have a fever, but I probably don’t.  And my headache is incredible and engulfing.  And lets not even talk about energy…or complete lack thereof.  My body feels like a noodle.

So how do I begin using the practices from How To Be Sick?  I keep taking little notes as I read the book; it’s like I think I will forget the good things I read, and I will never be able to go back and remember again. My fast evaporating memory is frightening.  So without looking at my notes, all I remember is that I should be compassionate with myself.

Have compassion for my sick little body.  This is what I am supposed to try to do  with this body that has turned on me?  I hate that I have gained, weight, I hate that I can’t go running across a parking lot just for the fun of it, I hate that I cannot come home from work and cook a lovely dinner for my husband every night, I hate that I feel like time is slipping away.

According to Buddhist thinking, the mental/emotional suffering I experience is rooted in my desires. And the mental suffering truly exacerbates the physical pain.  The word desire makes me think of something elicit, but in my case, the desires are pretty mundane.  I want my size 2 pants to fit, I want to hop on my bike or run a bit without considering the ramifications for my body, I want to care for my Love, recklessly and lavishly everyday.

Letting go of these desires is supposed to help me be better at living well with the way my life is…the way it has change to fit my pain.  So this is my work, and I must work hard at this. In my notes I wrote, open your heart to suffering, open yourself to the intense emotions that this illness brings.  So all these desires and hatreds, and despares I will try to just be with them.

Bernhard wrote this compassion verse from Tibetan Buddhist Master, Nyoshul Khenpo Rinpoche at the end of chapter 8:

Rest in natural great peace,
this exhausted mind.
beaten helpless by karma (causes and conditions) and neurotic thought
like the relentless fury of the pounding waves
in the infinite ocean of samsara (suffering filled life).

I will continue to contemplate these lines today, and I rest my body and mind in peace…I hope.

Pain Demons Be Gone

I know pain has really taken over when it hurts me to drive my car. I have had big commutes the past few days (actually every day since Thursday) and driving, in and of itself, is really taking a toll on my body.  My hands ache bad the whole time I drive, just holding the wheel to steer on the highway is murderous. The mere existence of traffic and the stress it creates exacerbates the pain I am trying to ignore in the first place.

So my purpose in writing about all this is not to fill the space with excessive complaints; I want to tell the story so someone might be able to say “yes, you said it, finally someone I can relate to!” And I want to write also to get the pain demons out of me.  If I hold them in, if I keep quiet about them, they seem to win on most days.  And as they sit inside and fester, the pain dose get worse.  If I push them out of me onto the page, then they cannot have the same power over my day.

Now I am not kidding myself into thinking that writing will make the pain go away completely, but whatever helps helps!  Last night what I needed most was just my husband right by me.  Nothing could touch the pain, not extra pain killers not Advil.  But he got on the couch by me, and we snuggled up together, and it really calmed the pain demons.  It was gone enough that my pre-sleep minutes were not spent in intense focus on the pain.  He has no idea how he helps sometimes, hmm…that is obviously my fault.  I need to tell him about it tonight.

And The Wind Will Blow

Yesterday, checking my email and finding the Chronic Babe newsletter. I happened upon an interesting book title. If you are not aware of it, Chronic Babe is a site ran by a chronically ill gal named Jenni Prokopy (sp??) who has started a site for chronically ill babes as a great internet support system, information site, and now also a forum.  She has created some pretty awesome stuff, and also brought a lot of attention to women with chronic illness.

Anyway, the book I found and looked up is titled How To Be Sick: A Buddhist-Inspired Guide For The Chronically Ill And Their Caregivers. The author, Toni Bernhard, uses her experiences with her own chronic illness, CFIDS among other things, and her study of Buddhism to bring together a mode of living well for the chronically ill. My description is surely lacking, but I plan on going into the details of what she talks about as I read the book.

So I did go out and purchase it almost immediately.  Somehow I KNEW that it was a book I would love, and only a few chapters in I am having all these exciting “Ahh ha’s” and taking notes (?) on what I read so I can remember to think about these ideas.

Right now, I am in this place of chronic pain limbo that I am sure most people go through…my issue is that I am not going through it, I am stuck in it.  It is a place where a part of me is mentally exhausted with dealing with pain, a place where I have no hope of really making it past this day of pain, and I go about not knowing how I will survive the next five minutes.  Then the other part of me, which is starting to fade (finally) has this insane hope that some POOF will come along and I will be magically healed!  I am stuck on this seesaw of near despair on one end, and Pollyanna thinking on the other.  As I am not so crazy optimistic anymore, the despair is starting to win out, and I really need to keep that from happening.  It would be so easy to give in.  I have started calling myself an optimistic cynic (my friend B coined the term)

So I picked up How To Be Sick, and now I feel like I have been struck by an amazing bolt of lightning. I have read the first few chapters, and I  have some new tools to work with.  She starts with the basic idea within Buddhism of Dukkha, which loosely translates to “Life is suffering.” Now Toni Bernhard wants the reader to know that this translation is a little too narrow, and stark for the true nuance that lies within the word Dukkha. She explains it like this: other possible translations of dukkha could be unsatisfactoriness, anguish, stress, discomfort, disease (for a few options).  The whole point is that every human can expect “suffering” out life, along with happiness. These two things are just part of existence.

Now, have I heard this before?  Absolutely, the Catholic girl that I am suffering is a huge part of that thinking.  However, the Buddhist perspective is so simple.  Bernhard goes on to break down how she uses this idea daily, and this is where the sense of it all came for me.  She talks about a method of coping called “Weather Practice.”  The basic idea is that the wind will always blow, and the weather will always change.  So any stress or anguish we might be experiencing will blow over eventually, and the opposite, of course, is true for happiness as well. We can count on the weather changing. And if you live in Colorado, you know this to be entirely true. 4″ of snow on the ground in the morning, and 65 and sunny by 2pm, and everyone is out at the park.  Basically, change is the only constant. 

How I find it easier to deal with the idea of the constant fluctuations of life, I am not sure, but it just makes so much sense.  If I can find a way to get through the present moment, whatever stresses it may bring, the wind will always change.

I Don’t Want To Talk About It!

But why?  I think that some good could come from me sharing my pain experiences, and how life has changed in order to deal with pain.  But I truly avoid talking about it with anyone, let alone putting words on a page to be recorded for all eternity, when maybe at some point those words could help someone else.

Do I really want to write to help other people?  If so, why do I avoid it like the plague.  Days come up where I feel like something that has happened is worth noting, and worth putting down.  I think I struggle with writing in general because I have a fear of the permanence of words. Once they have been published, or put out into the universe, they are there for all time.  The internet makes this all too easy.  I think I write by hand in assorted notebooks that I keep with me, or around my house on different shelves and tables, so that I can write, but it can still be private.  Am I hoping that like Emily Dickenson, that someday someone discovers all my bits and pieces of writing, my rants and whines, and ugly poetry and holier-than-thou declarations, all of which I seem to be deeply embarrassed by, will be found and prized by the public?  I really don’t think so.

So my real endeavor today is to decide that I will try to record and share my chronic pain experiences.  For somehow, it is important, and could help others who experience pain, if just for something to relate to.  To help others feel like they are not alone in their experiences, that someone on this huge earth understands their tiny lives, this could be a purpose.  But I feel so tiny and alone, and that is why I think what I have to share and say is unimportant to anyone but me.  That could be perceived as an elitist attitude too…it short I am down on myself in general, and that is the first thing I need to stop

Stop it, stop it!  I am going to start writing and sharing, if only to try to share what I go through and the fact that I find a way to make it through another day, and then another.  Is that an accomplishment or something even to be proud of?  I don’t know, but lets see what my writing will do.  I can at least try!

How can this be “traumatic” after 4 years?

Ok, so now I use this space as I said I would: to recount my day, and the pain within it (and hopefully sometimes the lack thereof). Today was a rough rough pain day.  I woke with a stabbing headache behind my eyes, my neck hurting.  This is one of those blinding headaches I do not get all the time.  It all starts at the back of my head, where it normally is, I can handle this normal pain after 3 years.   And normally does not bother me until the headache travels up and over my whole head.

I had these injections last week to help the pain in my head and my arms, and things have been better.  However, now when I am in pain, it is a much more  traumatic experience.  The fact that I call this traumatic is a horrible, but this is what it is doing to me emotionally, and the pain feels so much more intense.  So I stayed home from work, unfortunately, losing more money, but I need to not beat myself up for this.  My pain was at about a 9 all day, crying level at some points, and this leaves me in no shape to work.  I am lucky to have a lovie cat who sticks close when I am in pain (she knows) and a husband who does everything he can to help me.   The day is nearly done, loading up on PK’s for sleep and taking the extra muscle relaxer, in the hopes that I will be through with this blinding pain soon.  A girl can hope.

Pain blog or pain journal?

I have started blogs about dealing with pain before, however I never stick to it very strongly.  I seem to go in waves of writing and then forgetting to write at all.  But I think I have gone about it all the wrong way.  I tend to write when I am most upset about the whole thing, and I neglect to talk about the times when the pain is better, and what that means for me.

This is much like my participation in some of the forums that deal with pain, and headaches and other accompanying issues like anxiety.  I go there and write and read and respond for a while.  I do this especially when I am desperate to read something that I can relate to in my current dire situation.  I go look for some confirmation that I am just another human doing the dance with constant physical pain.  I want to know I am not alone, and I want to write about my experience.  But then I grow bored I guess.  I focus on the whole thing for a few days,  and then maybe my pain is not so intense and consuming; or maybe I feel like nothing helps…even talking about it all.

So, my new approach here is to view the whole pain and loathing blogging experience as a pain journal for myself.  My hubby and I were talking about the importance of keeping track of the pain, and I am also bad at this.  But I need to keep track of the pain and its progression, and I want to write about my impressions and observations being in this particular fallible human body.  I realize my experiences are not distinctive or unique.  However, my perspective regarding my pain, my ideas and thoughts on the process are particular to me, and therefore significant.  Does it sound like I am trying to be convincing here?  I think it is only for myself though, to help me find purpose in writing about pain.

I have belittled much of my experience thus far, and only now am I really ready to believe that what I have gone through is important to share, and to chronicle, if mostly for myself.  And it is chiefly for my benefit, to remind me that I was, and am here, and having this experience of being in pain on a daily basis, and how that influences my living and being each day.

So if you happen to read this, I hope you will follow along with me.  There may be days of incredible complaining, and whining,  questioning existence, and asking why.  But there will also be days of appreciation for being alive, and having this experience that helps me be more conscious of each day, and moment, and for the love I have around me.  So click away if you must, if this all seems self indulgent.  Truly it is to share, and to hopefully provide a word or two that someone might say “yes, I feel that!”to, and find some peace in finding the same humanity and struggles in another.  Welcome, and may all be well.