Pink

I really adore Pink.  The singer, the artist - and she is an artist because she writes most, if not all of her own songs.  She is a poet of lyrics.  Beyond her phenomenal voice and her talent in stringing words together to mean something very real, she's a badass.  And I like that in people.  I respect it. 

I'm a badass too and I always have been.  Life taught me lessons from a very young age and I learned them well.  But the thing is, and something I've only recently realized - sometimes, it's okay not to be tough.  We have to be exposed and vulnerable, even fragile at times.  We have to reach out for help.  That's a foreign concept to me - asking for help.

It seems that at 42 years of age, I'm learning many new things.  This belief I had that I knew myself, this life I live, inside and out, no longer holds true.  People change until they die.  Life is fluid and so are we.

Should I Write The Book

I'm trying really hard to finish writing this piece on.. well, I don't know how to explain it yet.   It was inspired by a book - Fly Away, by Kristin Hannah.  For any of you who have never read her books, I highly recommend that you do.  I cannot say enough good about them.

Fly Away is the sequel to Firefly Lane; books that traverse a friendship between two women from childhood to middle age.  One of the women, Kate, is dying of cancer at the end of book one and book two is what happens after she passes away.  How her husband, children and best friend, Tully, handle it. 

I began writing my own thoughts inspired by the books a few weeks ago and then stopped, meaning to come back to it later that day or the next.  I do that too often, begin writing and then not finishing because I get busy with life and lose the moment - being tapped into that introspective and creative place.

I have a hard time taking a break and coming back to write something because of that feeling of having disconnected.  Like I hung up the phone, waited a month, called myself back and tried to resume the depth of a conversation.  The flip side of that is that some of the things I write are so emotional that it takes a lot out of me.  I end up feeling drained by the process of putting heart, mind and soul into words and on the black screen of my text editor.  A break is sometimes needed to recenter myself.

Just like remembering painful memories and having to relive them in a sense, so goes writing what you think and feel.  It's a constant state of self-exploration and analyzation.  It's work.  You write, you go back and read later, you know that this word or that word, this phrase or that one, isn't quite right in its explanation.  It's back to the drawing board of your mind to find what you really meant to say and how it needs to be said.

Finally, this morning, I took the time to sit at my desk and read what I had written weeks ago.   I cried.  Not a lot of tears but I felt this intake of breath, a gasp that was barely audible and then the slow spread of emotional pain until I had to wrap my arms around myself, rock backwards in the chair and look up at the ceiling for a moment.

But in those few seconds, I also realized how good the piece is.  One of my best.  I rarely have those times of feeling pride in my writing.  Of being able to look at it from outside of the box, like I'm a stranger reading it and thinking - Wow, that's good.

Today I did.  I read it and I could finally see what people have said to me - "I can feel you, feel what you're feeling, in the words."  I realized this could be a book.  It could be the beginning or part of a book on so many things:

Being a middle aged woman; a wife and mother that has given up too much of herself over the years.  That woman who is trying to reclaim some of those parts. 

What it's like to love a man for over 20 years and question it all.

A woman who is sick - what living with that is all about.  The many facets of illness and disease on those levels - physical, mental, emotional. 

A woman who has a best friend, a love that is not her husband; who listens and hears and comforts, takes the journey with her.

A woman who has to let go of her adult children and how sad and frightening that can be.  It's like giving up this huge part of your identity.  You want to reclaim your own name and everything that came along with it.  Find new parts of yourself too.  But letting go of what has been your identity for so long - mother - is terrifying at times.

Maybe that doesn't make sense.  I know I'll always be their mom but it's different now.  It's been different for a while.  My son moved out less than a year ago so the feelings of 'letting go' linger and my adult daughter lives at home so it's a delicate balance of letting go and still being there for her when asked.

I'm pissed off about this specific time of my life.

Most women my age struggle with these same issues.  They watch their children go off to college or move out and go to work and they struggle with the full scope of that.

Most women my age deal with a long term marriage that sometimes feels like it's not enough - they're taken for granted, they don't feel as if they can be all of themselves - only what's come to be expected of them through countless years, by their spouse.

Most women my age realize that they have provided their own happiness solely through their spouse and children - not themselves.  They forgot gifts and talents, hobbies and joys of their own person and fulfilled themselves only by being a good wife and mother.

They realize that nobody is responsible for their happiness, for their fulfillment but themselves.  That they have to reach out and grab for what they want, their happiness.  They have to find themselves - and that is such a Dr. Phil statement that I'd like to vomit on it.  But, cliche as it is, it's also true. 

So for women my age, there is work to be done to begin the next chapter of their lives.  For some, it's an easier transition.  Some women don't get in their own head as much as others do.  Some women don't analyze the areas of their own unhappiness.  They think - this is my life - and let it be that.  And that's fine but I'm not one of those women.

What I'm pissed off about is this:  I have those very normal middle aged woman issues to sort through, to find answers to.  But I also have to do it sick.  Having a disease permeates every area and it definitely changes and shifts some of the 'normal' perspectives of this time in life.   I'm trying to sort through and find acceptance of my life with fibromyalgia, all of the adaptations it enforces and there are so many.  It overwhelms me often.

This piece could be a book about all of it.  Or maybe four or five books to tell the whole story.  I'm nervous now about continuing it because I realize that if given the chance, I won't finish it for months.  Will I give it the chance to be the story instead of the summary?

The Top Ten Realities of My Life - A.D. (After Diagnosis)

Recently, while talking with my therapist, I began thinking about the realities of my life with fibromyalgia.  I thought I might do a blog post about that but the more I considered how it impacts my life, the more overwhelmed I became.  It seemed impossible to list every reality, every change.  

I mentioned this to Heather a night or two later and she said, "How about ten ways.  The post could be titled: The Top Ten Realities of My Life - A.D. (After Diagnosis)."  Heather recently got a new job, a career really and she was on fire with creativity so came up with this awesome title.

Here is my list of realities but I'm not sure they are in order of importance.  Even trying to sift through them all to find the top ten is too difficult.  Nonetheless, it is a list to start with.

1.  Pain.  It has become my new normal.  I do not remember my life without feeling pain every day.  I miss even the memory of that and I'm not sure when it faded away.

2.  Exhaustion.  I never feel full of energy, like I can do everything I want or need to.  I'm angry over the limitations fibromyalgia has placed on what I can accomplish each day. 

3.  Medication.  I do not like taking prescribed drugs to control symptoms of this disease.  They are pain and muscle relaxing medications and I worry about addiction issues.  I've fought addiction my whole life because of my parent's problems with it and now to feel forced into taking them is frustrating and frightening.

4.  Existential Crisis.  This is what my therapist calls it.  Basically, I'm scared because I feel that my very existence is being threatened by fibromyalgia.   I'm frightened that fibromyalgia will make me bed ridden, wheelchair bound, give me dementia or Alzheimers or ultimately be fatal.

5.  Expectations.  I often times feel as if I spread myself too thin, trying to be there for everyone, have time with them, fulfilling what I perceive to be their expectations of me.  When I think I've dropped the ball on any of that, I see it as failure in myself. 

6.  Control.  Having a disease teaches you that control, in many areas, is a myth.  Something can happen to us without asking permission, without our giving it.  I need to control how fibromyalgia is affecting my life and sometimes, I simply cannot.  As hard as I fight on every level, sometimes the disease wins because of pain and exhaustion. 

7.  Grief.  I miss me.  As much as I know that who I am, the base personality is the same - how I'm allowed to live my life has drastically changed.  I miss the Jody that was always on the go, conquering anything set before her, working hard and taking a sense of pride in that.  I miss feeling like I was strong.  I don't want to grieve my old life and learn how to live this new one but I must.

8.  Communication.  I have a difficult time sharing what bothers me, with others.  I would rather hide it.  Hide the pain, the exhaustion.  Hide my tears - cry in the bathroom, alone.  I need to be the rock and the strength of my family.  I don't want them to worry.  I feel weak when I talk about fibromyalgia.  I get tired of people thinking they can fix me - they can't fix a disease so please do not try, it's frustrating for me.  Just know how hard it is for me to open up and when I do that, all I really need is for you to listen.

9.  Stability.  This is physical and emotional.  Physically, I never know when I'll have a bad or good day within the disease.  I don't know when I'll have a flare.  I can no longer plan - not just weeks or months in advance but tomorrow.  Emotionally, I want to find a place of acceptance, of peacefulness in what my life is now.  It's still beyond my reach.  

10.  Confusion.  My life has been turned upside down.  Like a puzzle that was once put together but is now scattered across the table in pieces, I try to fit them together and make the picture clear again.  And I wonder if that picture will even make sense to me when it's complete.

My Tank Is Not Full

I have come to realize that I won't ever get my life back as I once knew it and lived it. I am the same woman - I'm intelligent and funny, compassionate, loving, a good mama, honest and loyal. This disease cannot take any of that away from me.

That said, how I am allowed to live my life has changed. I get tired more easily now. I'm in pain. I do not get to run around all day, doing anything that comes to mind. I have to plan and make choices. Laundry or dishes? Errands or an evening out for dinner? I cannot do it all, every day.

Fibromyalgia forces us to prioritize our lives. It demands that we decide what and who is important to us. How we spend our time and who we spend it with - because our energy level has very little reserve. Our tank is never full, it's always hovering just over the empty line.

And yeah, that does suck. But, the silver lining is that we begin to realize how precious life is. How valuable time itself is. We learn to make the best of ours. We learn to make every moment count.

Alabama Shakes

This song always makes me feel good.  The beat grooves, her voice is powerful yet soulful and it has an important message.  Just.. hold on.

Therapy - God - Friends - Love

Today I begin therapy.  Not the kind that works on my muscles and bones, rather, the kind that works on my mind.  Three hours from now, I'll be in that therapist's office, beginning what I hope to be a journey towards balance.  I have been counting down the days and now, the hours.  Counting them down because of hope and fear.  I need this to help me find the balance that I've lost to fibromyalgia. 

I'm scared because I'm not sure if I realized how much work this might turn out to be.  I have to find a way to reveal myself to this male therapist.  I point out his gender because I don't trust men.  Due to things that happened during my childhood, I have no reason to trust them.  But, I've been on a waiting list for six months to get this opportunity for help and I need to reach out and grasp it with both hands.  

I'm not very good at talking to strangers.  I feel like what I have to say might be boring or dumb.  I feel insecure.  I feel, when I open up and allow others into my mind, that they might see the terrors, the horrible memories that live there.  I know this therapy can't just be about my struggles with depression due to fibromyalgia.  I have to talk about my childhood too, my son's illness and what that did to me.  

You don't get to talk about things like that and not relive it in a sense.  That's painful and difficult.  A part of me wants to cancel this appointment, hide from having to communicate.  But how do I get help if I don't?  The answer is.. I don't.  I need help.  Just saying those three words, admitting it, is hard for me.  

I talked with Tony about it last night.  I talk with him a lot about it.  I talked with Heather about it yesterday too, while we shopped, while we ate dinner together.  Both of them have been so supportive and I'm grateful and blessed to have them.  I truly do not know what I would do without their consistent presence, patience and capacity to listen and hear me, endlessly.  

Today, I called my sister in law, Carol.  I told her about going to therapy and how frightened I am.  Before we hung up, she prayed for me.  She asked God to be with me, to fill my heart with peace, strength.  To touch me with his presence.  I had tears in my eyes.  It was needed.  I love you, Carol.  I love you, Tony.  I love you, Heather.  I love you, God.  Thank you, all of you, for forming a circle of love around me.

"When you're weak, I'll be strong.  When you let go, I'll hold on.  When you need to cry, I swear that I'll be there to dry your eyes.  When you feel lost and scared to death, like you can't take one more step.. just take my hand, together we can do it.  I'm gonna love you through it." - Martina McBride

Do You Ask Yourself These Questions?

 

Some people do not believe in the progression of fibromyalgia.  I do.  Not only physical progression but mental and emotional progression as well.  Nearly four years into fibro, I am not much better at navigating the emotions and thoughts that go along with this disease. 

I'm incredibly sad, confused, angry, even full of rage at times over what this has done to my life, to the woman that I once was.  Being the kind of person who is in her own head a lot, I ask myself questions.  I try to do the work of self-analyzation, healing and growth.  I thought I would share some of the questions that I ask myself regarding living with this disease:

How do you live with constant pain and not be angry?

How do you live with constant pain and not hate your own body at times?

How do you not see your body as the enemy?

How do you see all of the changes to your life and not want to scream and cry?

How do you witness the changes to the lives of your loved ones and not feel guilt?

How do you not grieve the person you once were compared to who you are forced to be now?

How many times do you have to whisper, "Why me, God?"

How many times do you have to talk yourself out of feeling like a burden to those who love you?  Like you are trapping them into living this life with you, because they don't want to be the jerk that leaves over it or the person who avoids you.

How many times do you open your mouth to try and communicate what's happening to you on every level, only to close it because you can't even explain it?

How often do you push past the inexplicable agony and staggering exhaustion to do the things that need to be done?  Cooking, cleaning, laundry, errands, interacting with people.

How often do you wake up in the morning and have to talk yourself into getting up because it hurts and you're so damned tired?

How often are you full of sorrow over having to give up a job, a career, school and you now feel like an unproductive member of society?

How do you help people to understand why you can't spend time with them or go do fun things that they want to share with you, because you're in too much pain, you're too tired, or you dread the flare that will inevitably happen because you did 'too much' according to the limitations fibromyalgia has placed upon you?

How do you stop yourself from beating your fists against the limitations?

How many times do you have to revisit stages within the five stages of grief? 

Why do I work so hard to hide my symptoms, tears and emotions from my loved ones?

When I do talk about it, do people get tired of listening?  Do they understand how difficult it is for me to share? 

How do I make people understand that they cannot fix me?

What happens if the medicines quit working?  How will I ever live with that level of agony?

Would it be better, unselfish to let people go so they can have a more fulfilling life than what living with a sick person provides?

Why is every day of this disease different?  So different that navigating it is nearly impossible because -nothing- seems stable.  It feels like the foundation I stand on is trembling, crumbling.

Why won't some people believe that I'm sick?  How could they ever think I would make up something as awful as this is? How could they believe I would choose to live like this?

How do I accept that I will always be ill?

Am I a burden?

Am I still pretty?

Am I still sexy?

Am I still smart or funny?

Am I less than I was?

I have precious few answers to those questions.  I realize that rather than doing better with this, I might be doing worse in some areas.  Fibromyalgia has progressed on every level.  It is too big for me. 

I have always been a strong person, a strong and fierce woman in the face of any crisis.  Fibromyalgia puts me to my knees, begging for answers, for a sense of peace within my illness, within my whole life, as it is now.  Next week I start therapy.  I feel both a sense of dread and relief.  I am hopeful.  I'm scared.