The Darkside of Chronic Pain

I am not forcing anyone to read this and want to warn that this is a rare and intense post.  But if you choose to read on, you will have a glimpse into times of agony in my life and a much deeper understanding of chronic pain  that most suffering will not share. It is the side of chronic pain that kills a spirit.   The following writing shows my weaknesses and vulnerabilities.  My anger and frustration.  The defeat one feels by living with a dictator.

This is the side of pain that I talk about briefly in my blogs but don't want to dwell on because 1. who wants to read about such horrible things and 2. dwelling on them is toxic to me.  However, if I am going to be honest about invisible illnesses and chronic pain and the struggles that we face, this is part of it: the anger, helplessness, hopelessness, and solitude of the journey.  The reality of an invisible illness.

To walk into my house and look at me - you would assume that I might be tired and in need of a shower (both are true) but you would have no clue that I am in massive pain and exhausted beyond words.  You would not be able to see the anger and bitterness below the surface, lurking behind my smile. Years of masking the pain from those around me has made me the master.

The following are the emotions you will not see on a Lyrica or Cymbalta commercial and yet these are the emotions that are so toxic to those living with them if we don't deal with them.

Solitude:
It is 3:15 a.m.  I talk to myself, muttering under my breath, how angry I am that Tim is sleeping.  Much of what I say is repetitive and probably doesn't completely make sense.  Pain stops my ability to think clearly and explain myself.  How unfair.  Do I really wish he were awake?  No.  However, I do wish to not be overwhelmed with pain and loneliness.  Nothing soothes the pain.  There are moments when the loving, light touch of someone brings momentary relief but ultimately I find myself getting angry that they have a life and I don't.
I find myself judging others.  Unfairly.  Wrongly.  But, nonetheless angry that they have lives to live and things to do and choices to make and my choices are made for me by some random dictator of pain.  I see people who are overweight wasting time when they could be working out and my anger and bitterness flares.  I used to be thin and the medication and years of bedrest has taken that all from me.  I now feel like a fat unattractive blob who people (like me) judge unfairly and assume I am some lazy slob who just eats fast food.  Couldn't be farther from the truth.

Bitterness:
I see parents who are ignoring their children in order to satisfy their own needs. I don't mean occasionally or for sanity's sake, I mean the parents who are jetting off to vacations or who eat out nightly while their children are at home either fending for themselves or having a nanny care for them and I become irate.  I WANT to be cooking for and playing with my children.  I want to go hiking with my son and build snowmen with my daughter.  More than any other part of living with chiari, this is the most sensitive - the robbing me of my parenting joy.  We have adapted but that isn't what I want.  I don't want adaptive parenting - I want "normal" parenting.  I miss out on attending my children's events.  Nothing would bring me more joy or happiness than to be the parent cheering on Mary at every swim meet or applauding loudly after the kids' concerts.  I would be honored to attend Boy Scout ceremonies.  However, I am often in severe pain or absolutely exhausted.

Anger:
I see couples out to dinner and I long for Tim and I to have a dinner out.  It isn't that he doesn't try but with his busy schedule we get one shot at going and if it is a bad day or evening, I cannot go and our chance to be together is lost.  It is so unfair to him.  He has a partner who loves him completely and whole heartedly but whose body is led by an irate, unfair dictator deciding when and where and how I will feel.  Ignoring the scheduling and efforts we put into taking a night for ourselves.

It is important to me that everyone to know that things are getting better.  2010 was the first year since 2005 that I was out of bed more than in it.  I joined the PTO as the fundraising chair and took on other volunteering.  There were moments, weeks even, when I felt "normal" (which for me meant being out of bed 4 or more days a week).  However, as wonderful as that is, I have now spent the last two months fighting again.  Struggling to overcome pain and begging for sleep.  It will get better - I have a team of doctors and supporters who are determined to make sure that I get to live all my hopes and dreams.  They support the fact that I want to get my MS in Public Health and change the way that we deal with chronic pain and invisible illness patients.  There is much that we could do to make lives better, easier and more pain free. However, we need someone willing to focus on that and I am that person.  I am tenacious, determined, loud but (usually) polite, and unstoppable.

It comes down to choices and what we do with the choices we have.  I find myself angry when I see others squandering their choices.  So many people who are healthy are living as if they have dictators standing over them and they don't.  Trust me. I know what a dictator looks like.

Invisible illnesses are exactly that: ruthless, irate, unfair dictators who determine our fates on a whim.  Ignoring our hopes, dreams, and needs.  Sending us on month long journeys of horrific pain and torture.  Weeks without sleep only to bounce back, become hopeful again, allowing ourselves to live and then be struck back down by the dictator of pain.  Normalcy just out of our grasp.

Thankfully I am from Wisconsin and can overthrow a dictator. :)  I recognize the darkness that accompanies chronic pain and I have a great team of doctors and supporters helping me take back my body, spirit, and mind.  It is a long, slow, journey but with great friends and a wonderful family there is hope and determination.  Nothing stops a dictator quite like constant hope and determination with a side of sarcasm and laughter.

**If you are finding yourself overcome by the bitterness, isolation, and anger that accompanies chronic pain - please reach out and seek help.  Call your hospital, doctor, therapist, friend and let someone know.  There is hope and I promise that those emotions don't have to control or consume you.  You can overthrow the dictator, you just need a little help.**