Painsomnia Strikes Again: An Autoimmune Venting Post

 Painsomnia...  Easily one of the most-hated aspects of my autoimmune life.  It hit me at 3 am today.  I woke up with excruciating pain ripping through my entire body.  My bedroom was too cold, and my blankets had been stolen from me.  I woke up to try and get myself warm again, but by then, my pain was too high, and it was too late for me to go back to sleep.  I asked Michael to help me get a cup of coffee (which he does every morning and never has an issue with it) and to grab my pain medication for me.  I keep it in what I call the "control bag" which is a medication bag with a combination lock on it, to keep everyone out of my controlled medications.  Michael doesn't even have the combination to it, so it's quite secure.  He got up and made the coffee, got my medications and computer for me, then promptly went back to sleep, which I have no problem with.  That is what he does every day.  It's our "normal" routine, so this was not the problem this morning.  

With Michael back asleep, I proceeded to write in my journal, like I do each and every morning while he gets a little more sleep.  I sip my coffee, read the news, catch up with Facebook and other social media.  My writing time is the one time of the day that is just for me.  Nobody else is awake and talking to me or asking me questions or favors.  I can process my night, check-in with myself and assess my morning pain levels, meditate and whatever else feels necessary.  I do all of this while patiently awaiting the activation of the pain medication.  I waited for that for over two hours before I decided that I needed help from anyone again.  I did not want to need help.  I hate it when I need help with anything.  I'm hyper-independent due to trauma and abuse, so asking for help is literally the last thing that I want to do.  After arguing with myself for a little longer and searching for my smokeable pain medication, I was unable to locate it, so I knew that I had no choice but to wake Michael up.  I hate waking him up when he has to work because I know that he needs more sleep for those long shifts, but I had no other option, so I woke him up for help.  What a mistake that was!

When I'm in pain, I'm not the nicest person in the world and my usual sweetness turns sour.  I can't help it.  I try not to be a bitch to those that are helping me, but it's incredibly difficult when pain is ripping through every part of your body.  I waited until I was nearly hysterical with pain before I woke Michael up to help me and he made me feel like a terrible human being for needing help, which started me on a crying spree that lasted for over an hour.  I never cry.  I don't know how to show emotion or vulnerability in front of other people, so if I let it get to the point that I'm crying in front of someone, just know that I am at my breaking point because I would honestly rather die than let someone see me crying.  

Today was so much different than any other morning.  My pain was different.  It was much more intense than normal and that was too much for me to cope with.  I don't do well with pain.  My coping skills are limited, at best.  I'm learning things in therapy that are helping me to cope with my pain, but I have no mastery of said skills - yet.  I'll get there one day, maybe even soon, but it's not today, unfortunately.  After an hour of crying, I felt a little bit better - physically, but not so much when it comes to my marriage.  I am exceedingly hurt at the way he chose to treat me when I was desperate for help and pain relief.  I didn't deserve that.  He wakes up in the middle of the night and needs help with things, too, but I never treat him that way or make him feel subhuman.  Nobody deserves to be made to feel like they are nothing but a burden to their loved ones.  I deserved empathy.  I deserved compassion.  I deserved pain relief.  He takes away my will to live when he treats me this way.  He makes me wish that I had died in my sleep, so he would not be burdened by my existence.  How sad is that?  

I have rare, painful, fatal autoimmune diseases that I contend with on a daily basis.  I have Scleroderma, PBC, Raynaud's, Fibromyalgia, Interstitial Cystitis and chronic migraines (plus others).  None of these are easy to deal with and when you put them all together, they add up to extreme levels of pain.  I was told that I am dying at 34 years old.  I have lived with that reality every single day that has passed since I was diagnosed, and my hope was stolen from me.  I have at least one disease or condition that is flared every single day, without fail.  I never have a good day.  I have awful days, bad days and tolerable days , but never a good day.  A tolerable pain day is the best that I will ever get.  My medication does not remove my pain.  That is not the goal of pain management, anyway.  Their goal is to make your pain manageable; that's it.  A lot of people go into pain management thinking they will be cured of their pain, but that's just not practical with the regulations surrounding controlled drugs.  It's a fine line between need and abuse, so we must all be careful... me and my doctors.  Unfortunately, my pain is falling into a pattern that is leading me back into a depressive episode, and I cannot risk that happening to me again.  It was too hard to get out of the last one.  I don't ever want to go back.  

The pain that I woke up with this morning made me wish that I could go to the emergency room or urgent care for help, but unfortunately, they do not treat chronic pain at those facilities.  They will run scans to make sure you are not dying, but that is it.  Pain management is between you and your doctor or specialist.  If you visit too many times, you will get labeled as a "drug seeker" and nobody will help your pain after that.  Women get labeled as drug seekers much easier than men, although men are denied pain management, too, just not as often as women.  Doctors tend to be dismissive of us, especially male doctors, at least that has been my personal experience.  The doctor who listened to me and started providing pain management was a woman.  She is still my doctor to this day because she is one of the few that listens to me and I refuse to switch doctors right now.  She is amazing in so many different ways, not just in helping with pain management.  She keeps all my other doctors and specialists on top of all of my diseases and conditions.  My medical team would not run as smoothly as it does now if it were not for Cassandra Dubbels.  I just love that doctor so much!  

Michael and I had the ugliest of fights that we have had in a very long time.  I said ugly things that I regret.  He said ugly things that I can only assume he regrets.  We don't have the best communication skills with each other these days and it sucks.  I want it to improve, but I'm the only one who sees the problem, so I'm trying to learn to communicate with someone who is dead silent most of the time.  It's kind of like talking to a wall sometimes.  It's frustrating and makes me feel like I don't matter to him, but he doesn't see it that way, so he dismisses my feelings and concerns.  I can't carry on like this any longer, but I don't know what to do to make the necessary changes in my life when I'm the only one committed to fixing this marriage.  I just wish that he would get on the same page as me already.  We could be so great together if he would just put in the effort and make me feel worthy again.  

I apologized for my part of this morning's fight, but those words never escaped my husband's lips.  I was hoping for an apology so that we could move on, but it never came, and it never will.  It's just another thing that I must accept because I love an emotionally immature man.  The logical mind cannot tell the emotional heart what to do.  They are on two different wavelengths.  The heart wants what the heart wants, even when it doesn't make sense to the brain.  I don't want my marriage to fall apart because we are emotionally immature.  I want us to learn the skills necessary to work on this marriage together, but the question remains, "Will he ever join me?"  The ball is in his court, and he must decide what he is willing to do for us and our family.  I can't decide for him, and I can't do the work for him, either.  All I can do is hope and pray that he makes a good decision that will benefit us both.  Gods help us...

Stay blessed, y'all...