What you don't see

Me at my last pain management Dr apt.  My pain was at a 10

 In honor of pain awareness month and suicide prevention month, I want to talk about what you don't see from those in your life living in chronic and intractable pain. 
My family are the only one's who get to really see my pain.  I only share photos of myself on the good days.  Am I prideful? Yes!  But mostly I just don't want to bring others down by sharing my misery.  I don't like to talk about pain.  It takes so much from my life in the first place, I don't want to give it any more attention or energy.  But, I felt compelled since it's pain awareness month to share my heart on this subject. 

Me on a very severe pain day

 Pain is invisble and subjective.  It is not only difficult to explain but hard to quantify.  The pain scale helps us a lot to be able to gauge where we're at.  But given how subjective pain is, not everyone's "10" is the same. 
What about the days when we're out looking "normal" but gritting our teeth through levels of pain that would land normal people without pain in the ER?  And why is this even important to talk about?  I feel it's important because 100 million plus people suffer with chronic pain & a subset of that population suffer with intractable severe pain, ".

     "Intactable pain is described as “pain that is excruciating, constant, incurable, and of such severity that it dominates virtually every conscious moment, produces mental and physical debilitation and may produce a desire to commit suicide for the sole purpose of stopping the pain.” In the authors’ clinical experience, bonafide IP patients suffer profusely and are fundamentally bed- or house-bound in the absence of intense medical management."^{3 https://www.practicalpainmanagement.com/resources/intractable-pain}

 I live with Intractable pain. 

  Someone you know likely suffers in chronic pain and I have lost count of the people I know that say at least someone in their life either doesn't believe their pain is that severe or they don't understand.  It strains relationships to the point that many lose those relationships.  I know people who hide it altogether because of the stigma associated, so they suffer in silence. 

Which leads me to my next point, life is not meant to be lived alone.  People need people.  When relationships are strained the risk of loss and therefore isolation increases exponentially.  With pain being so common this really is something that should be discussed because there is such a stigma associated with chronic pain.  Most people who've never experienced long term pain don't understand the concept of how if affects your life living day in pain day out, or even just on a regular basis.  It makes it really hard to understand what you can't relate to.  I get it, even as a RN and before my pain journey even began I couldn't fathom having to live in pain that didn't relent.  It broke my heart for those people, but since I didn't understand it, what more could I do?

What I've learned from living in constant, daily pain for 10 years is that it is so important to try to help our loved ones understand our struggles.  Just like that saying, "everyone is fighting a battle you can't see,"  pain is one of those for many people.  Just as communication is crucial to the health of relationships, understanding someone else's experience is just as important in my opinion.  I am blessed to have an amazing husband who supports me and loves me regardless of the limits pain has on me. He is my rock and tries hard to understand. I'm blessed to have children who are compassionate and understand my limitations. I'm so grateful for the support of other family members.  I'm blessed to have friends that try hard to understand, and have stuck it out with me despite how I may not be the most fun friend since this is a part of my life 24/7.  Having said that, I have experienced difficulties like anyone else living in chronic pain has.  I have been blessed in the sense not many people openly doubt me or suggest that my pain isn't real.  There have been very few actually that have suggested that, but I realize that was out of complete ignorance and I really do forgive them.  Have I lost friends and some family members, yes.  But what I've gained is substantially better & I have support.  Unfortunately, for many others, they are not so lucky.  They've lost spouses, family members, and friends and that shatters my heart to pieces.  I realize not everyone is as lucky as I am so that is my heart behind sharing this with you.  

None of us who live in pain asked for it.  And I've yet to meet someone who would choose this lot in life.  Are there people who make up pain to get pain pills  yes, but they are fewer than what is being reported.  Are there people who make it up for sympathy or exaggerate?  I'm sure there are, but I've yet to meet one.  And it is really difficult to get good pain management anymore, you have to provide imaging and all sorts of documentation that your pain is real, which is good in my opinion.  Though I realize it hasn't always been this way.  It is now.  At least in the state and states of friends I know living with pain and they are spread all over the country.  

So why do I share all this.  What is my point?  What you see is usually me made me up and smiling.  That is not the regular and I feel like it's being disingenuous of me to not share that what it takes to get me to be able to get to those points is a whole production in itself.   I have to plan to rest up for said event, often times I've got to shower one day and wash my hair the next, and usually style my hair the next day.  A lot of resting in between has to happen.  I have to time the medication just right and because of the current climate I don't get the amount of medication that keeps my pain levels managed.  Therefore I have to try and plan around after I've taken my meds and be done before they wear off.  There is a ton of spacing out activities so I can get it done.  Do I have to wear makeup, no but I do that to feel somewhat normal and like "me".

My Mom took this picture of me waiting for my Dr, my pain was a "10"

What you don't see is my Mom driving me every couple months to my pain management Dr where I pee in a cup to prove I'm taking my meds as prescribed and try my hardest to explain to him my pain levels. What used to be a "10" (natural childbirth), is now something I live with regularly.  My pain stays at a 
"8", but reaches a 10 more than I thought possible. And there's absolutely nothing that can be done that I'm not already doing.  

You may see me wearing makeup and looking somewhat put together.  But what you don't see is that 90% of the time I'm doing really good to bathe and change my clothes.  I slap some make up on to try to hide that pain and cheer myself up.  If I allowed myself to look the way I feel all the time it would bring me down.  This is a means of self care for me. It's worth the price I pay to feel somewhat "normal" even if only temporarily.

What you don't see is that there is no more house cleaning days.  I do what I can which isn't much and my kids and husband have to help with the rest (which I hate btw...so much guilt).  I used to have a day every week where I deep cleaned.  I prided myself on the fact that you could eat off the floor.  No more of that... What you don't see is the only meals I can cook for my family is a meal I can dump in the crockpot.  And it is challenging to find meals that will taste good and are somewhat healthy.  Thank you cream of chicken soup!  There's nothing wrong with that, it's just I used to love making my family healthy meals.  I used to love spending hours planning and prepping.  I know, weird.. I used to love working out, I'm talking for hours.  I LOVED IT.  Not just doing stretches in my bed.  I used to love taking my kids on dates and going out with my husband.  I used to love getting together with girlfriends & visiting family. I used to love serving sex trafficking survivors and serving at church.  I LOVED, LOVED LOVED my  job as a nurse. It is my passion. These things happen very rarely now.  And not one day goes by that I don't pray God heals me so I can go back to work, back to living, that I can live life the way I long to so I can be there to the fullest for the people I love.  I maintain my licensure in the hopes that I will be healed enough to the point I can go back  to work. My dream is to finish my Masters.  Daily I pray for that and all the aforementioned to be restored.  What you don't see is that pain has taken so much from me that I refuse to give it any more attention.  It's like the criminal who stole someone I love and I grieve for the life I had.  I don't want it getting any more of my life. I won't give it anymore attention.   

But what I will do is share what you don't see in hopes that maybe it'll help someone else see all the things it steals.  All the ways it affects the lives of those you know, just in case you're having a hard time understanding.  There's no shame in that by the way.  I can't imagine understanding it either if I didn't live it or live with someone who did!!  I do hope my tone comes across as helpful and not critical, my heart is to help spread awareness.  Those of us in the pain community are already suffering and we need all the awareness & support we can get.  That's why I share.  Nearly every day, someone new in the pain community is contemplating taking their life, ending their suffering.  They're tired, tired of living a life they didn't ask for and being judged for it.  Tired of not being able to go to the Dr and get the medication they need to have any quality of life.  If you only knew some of these stories... it would surely break your heart.  And this is me being very real, but I have been where they are.  My family and faith saw me through the darkest days of my entire life where I chose to stay because I had too much to lose.  But I totally understand those that are too tired to fight anymore.  It's a fight that feels at times pointless. "Since there are 41,149 suicides every year in the U.S., according to the National Center for Health Statistics,  it’s possible that many of these suicides are driven by pain. Not proven fact, but plausible hypothesis. This would suggest that perhaps as many 20,000 or more Americans a year with chronic pain kill themselves, which would be more than the government’s tally of 16,235 deaths from prescription opioids every year."https://www.psychologytoday.com/us/blog/nation-in-pain/201511/chronic-pain-and-the-risk-suicide

“Approximately one-third to three-quarters of people with chronic pain experience moderate to severe depression. Patients with depression experience increased pain because of overlap in the two affected systems: pain reception and mood regulation. Both depression and chronic pain share some of the same neurotransmitters and nerve pathways. So pain is worse, function is poor, response to pain treatment is diminished and their prognosis is worse until they can get their depression under better control.”^{5https://www.ableto.com/resources/why-chronic-pain-causes-fatigue-and-depression/}
  
We need your support and understanding or willingness to understand now more than ever!!  So my main reason is sharing for those lives that are suffering with little to no support.  Because every life is precious, right? 

If you read all of this I thank you from the bottom of my heart.  Truly.  I know this isn't a comfortable subject and life has enough ups and downs without adding anymore voluntarily.  So truly, thank you.  Just know that I appreciate you more than you'll probably ever know.  Here are some suggestions on how to help if someone you love lives in pain.