Category Archives: Rewards

In the Beginning There Was A Little Rebel…

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There are times when the memory of the pain, the exhaustion, the all consuming list of symptoms, haunts me.  It starts like a whisper in my ear, and then feels a bit like falling down a long hole.  I don’t really like to remember.  This site is something that I dreamed of making since 2008 when the feeling of being a Rebel first hit.  It’s so much easier to remember only back to that point.  To the point when I knew that I was getting better.  To the point when I knew that I was going to be okay, somehow.

So, there are years, and years, and years of pain and illness memories, that I keep stacked up, tucked away… with a nice heavy cloth to hide them in the corner of my garage.  They feel like people from the past that turn up, uninvited and want to drag you back to a place you don’t want to go.  It’s been a process of uncovering to get back to them.  To remember the fear and the anger, the hopelessness and the powerlessness.  It’s been a process that had to start with establishing a willingness to go back to them.

The memories seem to bubble up at the funniest of times… when I was almost done with a day of heavy digging in rocky, compacted soil.  It was the kind of huge job that I still can’t believe that I can do.  Standing in darkening, newly dug beds, feeling hot despite the cold dusk air, and flinging my sweater over to the nearby patio.  I wiped my forehead and realized that I had done all this.  In one day.  All by myself.  My first thought was, “oh, no. you’re going to regret this tomorrow, and the next day, and the days after that!”  It was a scary feeling full of regret that came just before a flood of memories that left haunting ghosts of pain and fatigue flood my body.  A different reality.  The old reality.  The one where my life consisted of moving from sitting in one place to sitting in another.  Of never doing too much, of never knowing when the pain was going to flare.

But it wasn’t my reality.  In my new reality I get to spend 6 hours digging, weeding, scraping, planting.  In my new reality there is no punishment for such freedoms.  In my new reality I wake up the next morning, roll over to see how high the sun is and think about what I most want to do today.  In my new reality I get to take yoga classes and keep up with the teacher, straining deeper and deeper into poses, holding out and refusing to let my muscles tell me that it’s enough before the teacher does.  In my new reality I get to take friends on a hike up the mountain so that they can see the vast beauty of where I get to live, even when the snow blocks the more reasonable path and our hike qualifies more as rock climbing for an hour.  I like my new reality so much more and would like to leave the old one buried somewhere.  But I also want to unearth it for you.

I want to dust it off, say things like, “Oh, I forgot all about that!” and show you that it’s possible.  That I’m certain that Fibromyalgia isn’t a life sentence.

I want to pull out all the old memories where I’m fumbling forward, blindly, reaching for a health that may never be there for me.  I want to share with you all the moments when I was sure that I was getting worse instead of better, where I wanted to give up, where I just wanted to take a fat pill to make it go away for a little while so that I could think about something other than getting better.  To crack open those days when I crumbled, and cried, cursed and gave up.  I had no road map, no guide, to promise to go on.  Just a gut feeling that I would not give up my life to this thing.  That I would fight for it.  That if necessary I would chase, and rip and pull my life back to me.  It was, ultimately that Rebel spirit that carried me through everything that I would have to do.

I’ve had the great pleasure of talking to some of you over the years.  Sharing phone conversations, fears, miseries.  It makes me immensely happy to know that I am not there anymore, but that I am here for those who need a hand or a shoulder.  It opens up that compression that lived on my chest for most of my life and spills out knowing that I would befriend every one of you, hold your hands, help you to bed, tell you that it’s going to be okay… just keep going.

I have dreams that Fibromyalgia is a blip on the map of our past.  That we learn not just how to heal from it, but how to prevent it for our children and theirs.  I dream that this swell of diagnosis is near the breaking point and that I will not be a rare case for long.

I’m trying to start a rebellion.  wink wink nudge nudge

To our health!

 

Management of Pain While Healing

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Manage. This is what I did for myself in the beginning. I managed.  Once I realized that this is what I was doing, a whole world of options opened up to me.  As I researched managing pain I found a wealth of information from hospice workers.  The most helpful came from reading Buddhist Teacher, Zen Priest, Medical Anthropologist, and Author Joan Halifax.  At first reading about pain was scary, but quickly it was quieting. Comforting.  I started learning about meditative management of pain.  No, it wasn’t easy.  Often I didn’t get it.  I didn’t understand words, ideas, faiths.  I didn’t want to sit, I couldn’t focus, I had no patience, and was easily bored, but I did it.  My life became about this.  I eliminated all  non essential things in my life that interfered with this new focus.  Yes, this included unsupportive family and friends.  This was a matter of life and death.  Death being the life swallowing symptoms I was working against.

I knew nothing of Buddhism.  I knew little about what meditation really was.  I just moved forward.  I focused.  I bought a Buddhist magazine called Shambhala Sun, I read, and read, and read.  As I did this I started to learn that I could quiet my body’s reaction to pain, to stress, to fear and especially to outside factors like loud children, traffic noise, phone calls.  I started to become aware of myself and my body in a way that had seemed dangerous all of those years before.  I had spent half a life time learning to ignore what I was feeling so that I could survive.  Now I was focusing on it.  Everything started to slow down. Slooooow down.  Feelings and pain and stress and fear stopped flying at me and floated around instead.  I started feeling separate of these things.  A big shift from feeling like I was made of them.

The pain still rose up, but it wasn’t having the same effect on me.  It wasn’t so sharp, so unbearable.  I started to understand this ‘Brain-fog’ thing because I could see it more clearly.  I wasn’t fogged.  I wasn’t confused.  I didn’t have memory troubles.  I was tired.  My brain was tired.  Sometimes more than others.  From this tired brain place it was easy to go on auto pilot and react to the world as it happened to me.  As I slowed down and became more aware of all that was happening in my body I was able to slow down the world around me too.  When previously I could not find time for sleep, or accomplish it, I was now able to open up space for this in my life.  Even when I meant bringing the kids into the bedroom with me, setting the up with something and napping between them.  Bit by bit the life inside our home changed to accomodate what I needed.  I did not make a list and demand that it adopted by my family so that they could tell me why this could not happen.  I moved life myself.  I changed and it affected change.

Remaining calm and peaceful became a high priority.  When my family realized how much more functional and healthy I could be in a calm environment they started to prioritize this too.  It wasn’t over night.  We didn’t know what was happening as it was happening.  It just shifted, imperceptibly, as I shifted.  As we realized that I was getting better, even in the presence of devestating regressions, it became easier to allow me the things that I needed to get better.  When we began to believe (together) that I would get well, it became simple to make sure that we were protecting that progress by letting other priorities go for a while.  Life shifted.  It became about healing.  Living was put aside.  Chores, expectations, commitments, these things were placed below all things that led to healing.

It was like starting to finally see a hint of that light that was supposed to be at the end of the lightless tunnel I had started traveling.  It was the breath of life, the ray of sun, that was rewarded after all the promiseless trials.  And there were many, many promiseless trials.  There were more coming too.  It didn’t really matter though.  This healing thing had taken a life of it’s own and I was being carried through it, pushed through it, pulled through it and sometimes crawling through it of sheer will.

I had no idea how long this tunnel was.  I had no idea how far I may or may not have come.  There came a point when it didn’t matter anymore.  I wasn’t focused on the light at the end.  I was learning to focus on the best here and now that could be achieved.  I was learning to experience each moment in the best way possible, pain or no, fatigue or no, strain or percieved failure or not.  Each thing was going to be experienced in the best way that it could be.

It was an astounding lack of judgment.  It took me a while to realize that shift, but when I did it opened up yet another stash of tools for the process.

I read more.  I perused the book ads and reviews in Shamala sun and found two books that would become very important to me.  Two books that would act like security blankets and start to carry me back into every day life.  They were The Four Agreements and The Power of Now.  If someone had told me that these two books would have anything to do with healing I would never have picked them up.  I wouldn’t have believed such a thing and thus would have chosen to not waste my time.  But no one told me that and they intrigued me, so I was able to pick them both up and simply read.

I read them ever, ever so slowly.  Trying to understand every single sentence.  To follow every single paradigm shift, and to take a break when I couldn’t follow anymore.

I was truly astounded to discover that these two books helped me manage the pain.  It went against everything I had ever been taught, told or previously believed, but it was very real.

I was getting better and it was time to refine my practice… discover what was truly working and give it more.  Learn more.  Heal more.

The Past 5 Wks – Post Detox – LIFE RETURNS

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Writing the details of what you’re going through while you are suffering it can be a bit much.  It was for me this time.  If I was feeling well enough to write the last thing I wanted to do was recall the symptoms so that I could write about them.  This time around was hard.  Much harder than the first because it was done over a much shorter period of time.  The last time I began eating a fully organic diet a few years before I started eating a whole food diet.  The whole food diet was almost a year before I began the GAPS restrictions, etc.

This time I already knew what I had to do and began it all, cold turkey, at the same time.  The repercussions were pretty severe.  The detox was awful, and not knowing how long it was going to last was difficult to manage.  But, alas, a mere two days after I thought I couldn’t handle the severity of the symptoms anymore and went looking for help, they began a hard, fast decline.  So fast that I was left feeling like it couldn’t possibly have been as awful as I thought it was, or that it was just a lull and would come back.

It hasn’t.  Four weeks ago I took a big plunge and enrolled in a beginner’s ballet class for adults.  I won’t lie.  I was scared.  I almost backed out over and over again.  I almost left during class for fear that I was going to overdo it.  When the instructor told us at the end of class that we were now going to do one full minute of situps every part of my brain went NOOOOOOO.  No!  Bad idea!  Don’t do this!  But I did.  I did it.  I never expected that I could even do it, just that I would try and either hurt myself or plain not be able to DO a situp.  I simply could not believe it when I did it.  I got tears in my eyes.  The music ended, the class clapped, the teacher beamed at us and told us how proud and excited she was to do this class and we walked out the door into the sunny parking lot.  My family was waiting in the car, expectant, wide eyed.   The class had gone 1 hour and 45 minutes.  They couldn’t believe it and as I watched them watching me walk across the parking lot I knew in that moment that even if I did suffer the next day that it was worth it.  The way that I felt in that moment; the strength, the pride the freedom… even if it was never to happen again, it was worth it.

As if that wasn’t enough for a happy ending.  If that wasn’t just almost too much to take it… the next two days came and went uneventfully.  No flare ups.  Nothing that said Fibromyalgia.  I felt what I assume every other dancer felt the next day: the muscles that I hadn’t used before.  When I told my husband I did cry.  I cried because of the relief.  I really was so scared.  I cried because I felt like an ass.  I cried because I had lived without symptoms for sooo long and then made choices.  Choices that I knew I shouldn’t make.  I made excuses.  I felt guilty for where I had put myself again and where I took my family when I went there.  I cried for all the food I ate that polluted my body, for all the times I stayed up watching a movie instead of going to bed.  I cried for all the times I should have made infusion instead of buying a cup of coffee.  I cried and got all the crap out and then let it float away because they didn’t blame me.

It’s hard.  In the world we live in, in the culture we live in: it’s hard.  Even when you know, from personal experience, what you need to do – it’s hard.  And that’s okay.

I’d like to say that I won’t do it again.  That I’ll never let myself feel another Fibromyalgia symptom again, but I know that that’s a lie.  I know that it’s been a matter of weeks since I proved to myself that I have control of whether or not I experience Fibromyalgia and I STILL had an ice cream cone in the historic center last night while sitting with friends.

That’s who I am.  There is some part of me that needs to understand exactly, exactly what I can and cannot do.  Exactly how far I can go.  Exactly how much, how long… I just need to.   I first proved to myself that I could live for years without symptoms.  Then I needed to know how much of the restrictions were certain and how certain they are.  Now I know.  I really do.

I’ve learned some new things this time around too.  Playing with specific types of foods to see my level of sensitivity to them.  Watching which symptoms are affected by what choices.  Knowledge is power.  It’s enough for me to be able to say that I will likely never eat gluten again.  I will never eat anything that contains an additive, binder, or “naturally derived” adulterated ingredient again.

I want to do more than survive the ballet class.  I want to find strength and grace that I have never known.  I want to dance in the recital next year. :-p  Yesterday I hiked for one hour straight up the side of the mountain next to our cabin.  We barely stopped as the thunder clouds rolled in.  My kids wanted to make it “all the way to the top” and so did I.  Just as we reached the summit the sky opened up and rain poured down on us.  We were on a new trail with nothing beyond a sense of which direction would be a sure trail down (rather than to an impassible gorge).  We’re adventurous and never take the same trail down that we took up.  We follow the elk paths and we have real adventures.  It was another hour down the mountain via a valley that a spring fed creek ran through.  It was like a different world in there.  The ridges rising a hundred feet over our heads and the grass and flowers grown as tall as my daughter were so different from dry desert mountain all around it.

I want that more than I want any of the things that I can’t have.  I want that more.

To our health.

xoxo