Between that rock and a hard place

Those of us with chronic pain we live between a rock and a hard place.  Always a certain amount of suffering that needs to be endured, never enough treatment to help with it and no one to tell us how to manage our pain.

My dad came for a short visit on his way to start a new job and we got to chatting.  We ended up chatting about chronic pain, that of FMS (for both of us) and migraines in my case.  My father, I believe, suffers more physical pain from FMS than I do.  I mean I have had some crippling bouts of it, no doubt about it, and the Lyrica definately helps us both, but on a daily baseline pain I would say his is significantly higher than me.  And on my side of the genetic pool I ended up with chronic migraines, which are quite obviously complicated by the FMS.  Both of us have suffered for quite some time.  I believe my father was diagnosed in his late thirties.  And me when I was 22.  Although I know in my case a specialist said I was symptomatic at age 16 and I had symptoms as early as 8.  So we both have long records of chronic pain.  Long records of seeing doctors, getting treatments, trying medications and seeing specialists.

I expressed my fustration with my situation.  Essentially that I am not sick enough for long term disability according to insurance standards.  He knew of the same stories I do of people who have stuggled with insurance companies and getting cut off once they are deemed 'fit' to return to work.  And, my treatment options have dwindled, my neurologist no longer seeing any real options that will work for me.  So, I will continue to suffer as much, or more, while having to work full time which will natually increase my physical, mental and emotional pain because no one sees fit to create an option in the freaking middle.  I felt a profound sense of relief that my father understood what I was talking about.  That there is something so intrinsically wrong with the system that if they can't cure you they just leave you to suffer, but if you are not insane or dying then clearly you are fully capable of working.  Wha? 

That it is an insane burdan to be expected to endure this suffering without anything to ease it.  By suffering I mean more than pain.  I mean the emotional toll of dealing with chronic pain, the problems with other symptoms, the stress of working around a disability in everyday life and yes the physical pain on a day to day basis.  I think it is cruel that they just leave us to suffer without options.  Some of us very lucky few will get options.  Such things as pain clinics.  Ways to cope with pain.  Ways to live with suffering when there is nothing that can be done about it.  Positive ways.  Ways I can't imagine because I have never been refered to such placed because they would not be able to help with 'my kind of pain'.  But it is damn cruel to not offer those options and just expect us to figure it out on our own.  Suffering is a given.  Suffering well is not.  It is unrealistic of doctors to think people with chronic pain will natually be able to cope year after year, decade after decade.  Because, just so they know, there are positve coping strategies and there are negative ones... and sometimes we will use whatever the hell gets us through the day.  And can they say that is bad when they are not doing a damn thing to help their patients?  But that is where they leave us.  Just winging it.

That is where they leave all the power up to us.  Where we have the choice.  Get busy living, or get busy dying.  Unforunately, when we do not have effective treatment and life is truly a living hell we often turn to the later.  And when we choose to get busy living we have to figure out how to live well.  How to somehow reduce our suffering to a manageable level to function and survive.  Frankly I sure the hell don't know how to do it yet.  I have tried so many things my head hurts just thinking about it.  There really ought to be some sort of pain rehabilitation a person can take where they teach you effective ways to manage your pain.
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