The Real Pain

Today I have to talk about pain.  Not because I am in any particular level of it right now, but because of an unfolding scenario I have been observing that has played out many times over in the lives of my friends.  Chronic illness and pain patients are all too often accused of wrongdoing while simply trying to manage their difficulties to have a normal life.  This subject is due some work for awareness as much as the diseases that cause it.

This is going to be blunt.  It has a purpose.  Please read it anyway.

Our credibility has taken a hit because of two things.  The first problem is the real addicts out there.  The second problem is the knee-jerk reaction of the powers that be, in what they think is a good move to prevent addiction (it’s not).  Let me say that as someone that lives with some very painful conditions, it is NOT MY FAULT that there are addicts on the planet and I am not contributing to their issues by trying to manage my own health.  If someone is an addict, they are going to be one and find ways to feed the addiction with or without legal pain medication being available.  Penalizing legitimate patients is not the route to go, and yes this is sounding political but I am just so fed up right now.  This very thing is what is prompting people to say rude things and make uneducated, presumptuous accusations against good people that are suffering from terrible illnesses that cause intractable pain.  Everyone has become the “expert” now, and they are so snide about it.  Everyone seems to think they know everything about it.  If you deem yourself an expert about Systemic Lupus, Fibromyalgia, Rheumatoid Arthritis, Scleroderma, Trigeminal Neuralgia, and more, then by all means please step up and educate me right now.  Tell me how fake my diseases are, and that of my friends.  Tell me how the pain is all in my head and I don’t need any assistance.  Tell me why it is that these documented diseases are so easy to manage and what massive mistake are we all making that makes us so delusional about our own health.  Let’s hear it.

Crickets

The real pain is the idiots that are so busybody that they have nothing better to do than slander people that are hurting to their core.  Those that cannot keep their ignorant beliefs to themselves are causing more harm than the disease, the pain, and the medication all put together possibly ever could.  If it means I have fewer people around me in life, then I will gladly kick out anyone with this type of misinformed vitriol to spew.  I don’t need anyone like that in my space.  Neither does anyone else.  Managing an illness takes too much energy to waste it on them.

Anyone that knows me, talks to me, or reads my writing on various pages – the blog, Mariposa Climes in Facebook, Twitter… you all know what I am about.  I am an open book on these topics.  I believe 100% in a few things, and among them is the fact that taking charge and making the decision to eat healthy and exercise is paramount to having good quality of life as an autoimmune patient.  I promote making good choices in those areas, and diligence to the commitment.  I also believe in grooming your mental and emotional health alongside those things, and having a spiritual foundation whatever it may be.  Cultural connections are important as well, if you’ve got them.  I am a traditional Native American woman, and I also own a copy of the Tao and study martial arts.  I believe wholeheartedly in balance, focus, positive energies, and sincerity in relationships.  I do not keep people in my life that do not possess those qualities.  (Yep, if you’re on some friend list and you just wondered whether you are doing right in those areas, you might just be teetering.)  I cannot stand to watch anyone day after day wax Maudlin and woe is me over every little downfall to being ill.  We all have our moments, but it is a MOMENT and you shouldn’t be setting up camp there.  I encourage everyone in my circles to work at self improvement, because it is the one thing that we do have some control over in this life.  Your mental position – attitude – determines your physical one – altitude – ultimately.  You can choose to give up and fail.  You can choose to continue moving.

I say all of that to point out that managing pain starts on the inside and not on a physical plane.  I am absolutely a proponent of minimal medication.  I am minimally medicated myself, and I work very hard at those healthy choices mentioned above so that I can stay that way.  At no point however will I fault anyone that needs to take a pain medication if they are feeling like they would rather blow their own head off than continue another minute in the agony they are experiencing – HELLO I have been there myself!  I hate Vicodin, for the record.  I don’t know what it is about that particular formulation but it seems to be especially addictive.  I do not know why one hydrocodone with acetaminophen behaves differently than another formulation that is the same combination of base drugs, but the fact is they do.  I had bad experiences with that one, and no problems with Norco.  Go figure.  I am not – also for the record – on daily pain medication at this point in my life, and I haven’t been for many years.  I would encourage anyone that is to try to find better solutions, and make the lifestyle changes that are necessary to support it, but I am not about to accuse everyone in that position of being an ADDICT!  We all have our own paths in life, and circumstances that have led us to whatever point at which we now stand.  We all have to start somewhere, and not all directions are right for everyone.  I can remember being in such tremendous pain that I could not force of will, rage, or any physical or mental power force my muscles to respond so that I could stand up.  My muscles were massively fatigued, and my nerves were shot on responsiveness during my worst flare in 2006 before I even knew that I had Systemic Lupus and Fibromyalgia.  I lost most of that year to it, unable to walk.  Did I need pain medication?  Yes, if I didn’t want to wake the dead screaming my head off when I tried to roll over in bed or crawl to the bathroom.  Yes, if I ever even wanted to get a wink of sleep at all.  Yes, if I wanted to be able to drag myself to a car to be taken to see my Drs on the many visits that year entailed.  If I had known of some way to control the pain without that medication, I would have done it in a heartbeat.  I hated it.

I do not want anyone to ever think that how I am managing my life now is an indicator that I am disapproving of medication, even for pain.  There are times in life when some of us need it.  I have done it, and likely will again several times.  The difference now is that I have dietary and activity regimes managed well enough that I only need a small amount on occasion and at most for a week or so when I have a flare.  That is an improvement that I can be very happy with, all things considered, and I am not ashamed of it one tiny little bit.  No one should be ashamed of doing what is necessary to get through their day.  On that note, LEGALIZE!  I am really fed up with the uppity snots that say that “most” of the people utilizing the medical cannabis card and shops are abusing it.  MOST of the people that are not in serious need and want it recreationally get it the same way that they always have, which is illegally on the streets, so step off already.  Yes, I support medical cannabis, absolutely.  I know too many horrendously ill people to not have the compassionate and educated standpoint to approve of it’s use.  I am also pro on high CBD strains, and juicing if possible because that removes the psychoactive component from the issue.  I approve of and applaud the development of the Charlotte’s Web strain for children that are catastrophically ill with seizures and other ailments.  Why are so many people so stuck on the idea that it is “a drug“?  It is a medicinal plant for crying out loud, and lacking the many toxic side effects of the synthetic medications that would otherwise be given – especially for the young, the elderly, the infirm.  Our priorities and “morals” have become so misdirected that this society as a whole would rather torture ailing people than give them some reasonable relief and a chance for RECOVERY.  I won’t bother to list the many, many prolific uses this plant offers because it’s easy to look up.  Go look it up.  Get an education.  You’re on the internet and it’s easy!

I don’t talk about this often.  I try not to be political.  Yet here we are… and why?  Because I watched a dear, sweet, good-hearted, loving, motivated, fantastic friend today tell me that she had cried because of hurtful things said about her.  A woman that tries to avoid medication that isn’t absolutely necessary, and like myself endures much before giving in to use it.  A woman that just went through a major surgery with a very bad post-op recovery and uncontrollable pain, who had to be told at times take your pill a little early while she tried to wait till the next dose time.  Anyone that lives with intractable chronic pain knows that sometimes we have to dose early to keep the pain managed.  She has tried to do everything right, and has fret way too much about the potentials for addiction, while she suffered for days with no sleep in spite of medication and someone wants to call her an addict?!  Shame on anyone that has ever uttered that word without knowing the entire situation, or having had the experience themselves.  Shame on you.  Were I a vindictive type, I would wish for you to experience it.  I would not however wish this on anyone.  Not anyone.

May you never (if you have not) experience the level of pain that I have in my life, seemingly without provocation.  May you never have to live with an immune system that turns on you and attacks your own tissues and bodily systems.  May you never have the kind of pain that makes you think that death is preferable to another breath.  That is my wish for everyone.

I am thankful that today is a good day for me.  I can walk.  I am breathing well.  I can make my own meals, and stand long enough for a shower, and reach up to brush my own hair.  I can sleep for several hours and wake feeling reasonably rested.  I can turn over in bed without stabs of pain.  I can sit in a chair.  I can drive my car.  I can carry my own groceries in from the car.  I can go to a store on my own.  These are all things that most readers may take for granted.  I did before I lost them.  I have been that person that could not do any of those things.  Today I can.  Thank whatever you believe in if you can too.

Take one moment now… and wonder… if it happened to you, what would you do?  How would you handle it?  How graceful would you be, and how thankful for your life at all?  Would you be angry, bitter, depressed?  Would you feel you had something to look forward to?  If you were that person, and being told you should not take anything for relief and if you do then you are an addict, how would you feel?  Would it make you feel like a valid member of society to know that something inflicted on you made others view you that way?  How easy do you think it would be to continue holding your head up… if it happened to you?

Develop empathy and compassion.  Love to all of my Lupie brothers and sisters out there today.  Even when your relatives turn their back, you still have a family.  ❤

T

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One thought on “The Real Pain

  1. Now try to imagine being a young women who is mentally handicap and suffering daily pain that is so bad it makes her fall to the floor in tears. My daughter has suffered for 8 years now. She is in the mind set of a 7 year old. I can’t get anyone to give her pain medication for all the reasons you have stated. It is so easy for the Doctors to close the door and go on to the next patient. They do not have to go home with her and hear her cries all day and night. She does not want to live anymore and I have to try everyday to convince her it will get better. Her pain is slowly killing me. It is a form of torture that the Doctors can’t begin to understand. She shakes from pain like she just woke from surgery and yet they can just close their eyes to her pain.

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