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.

Flu & Fibro

The flu has been running rampant through our family for three weeks.  My son was the first to get it.  Then my husband, John.  Next came both grandchildren and then myself.  Now my daughter is getting it.  Somewhere in there, even my niece, Heather, got it.  She visits often to spend time with us (me) so maybe she got it here or possibly at work.  Either way, the flu has kicked our collective butts.  

It manifested differently for all of us.  John had a sore throat for a couple days before it slammed into him like a bus.  I had a cough for a day and then it ran smack over me too.  Heather was here visiting one night, felt fine and the next morning woke up with the flu full out.  So, whether it creeps up or punches you right in the face, it's been a nasty thing to have. 

It also seems to linger.  You get past the worst of it in a week or so but  still struggle with some symptoms for a while after.  I'm right in the middle of the worst of it.  My chest is burning, a bad cough, sinus infection, sinus headache, sore throat and ears.  

Where fibromyalgia comes into this post is my personal philosophy:  If you have a disease, you should be exempt from 'common' illness.  Whether it be cancer, MS, Parkinsons, fibromyalgia, RA, lyme's, chrons, lupus - whatever disease you happen to afflicted with, the point is that it's hard enough to live with those without a cold or a flu on top of it.

But it's just the opposite.  Rather than be exempt, we're more prone to becoming ill.  Our immune systems are compromised by the disease itself or from simply being exhausted and in pain.  Our doctors suggest a flu shot each year to help us, our weaker bodies.  Those shots hurt like mad.  The solution used is injected right into muscle and it leaves a bruise to ache for a few days afterwards.

I'm irritated that I have the flu shot every year - not at my Rheumatologist's suggestion but at his actual demand and I'm still sitting in a pile of used kleenex, surrounded by lip balm for chapped lips, chicken noodle soup and cold medications that I cannot take because of high blood pressure or they interact with this or that prescribed medication.  

I'm wishing, hoping and praying for Spring to arrive soon.  I want to open doors and windows and air out every bit of sick in my house.  Until then, the Ellen clip makes me laugh and feel a little better.