How can you be desensitized to my personal hell?!?

1:20 AM – I just endured a random asthma attack.  I haven’t have one of those in a while.  I forgot how they suck.  I've got that under control – other than the residual uncomfortable feeling in my chest and the weird nerve sensitivity thing that always lingers.  And let’s not forget that I now have a terrible case of heartburn.  You know the kind that makes you feel like you are on fire from the inside out and requires that you sit up for a while.  Not to mention the fact that I am now wide awake and don’t foresee sleep in my immediate future.  Ugh! 

This has been a whopper of a week.  Due to the drastic change in the weather and a low that settled in, I endured a rager or a migraine that came on without warning and plagued me for a solid 24 hours.  That was a delight. 

But, something interesting happened tonight.  As my asthma attack came on and I was roused from my slumber, my husband lay in bed, still awake, messing around on the internet.  The ordeal, typical of the asthma attacks that plague me, slowly gained steam from an annoying tickle to an acute attack.  As I mentioned, I hadn't had an asthma attack in quite a while so I was slow to catch on to what was happening…plus I was asleep so it took a bit for it to resonate.  But, within a few minutes, my tickle and coughing turned to a severe coughing fit and labored breathing.  I was suddenly sitting up on the side of the bed gasping for air.  To my dismay, my husband barely acknowledged I was there.  As a matter of fact, he had decided he was sleepy and had turned off the iPad and rolled over to go to sleep…without saying a word to me as I struggled to breathe. 

I was suddenly pissed.  Why didn't he care that I was in distress?  Don’t I matter enough to get a “are you ok?” out of him?  It was a big WTF moment for me.  So I decided to calmly – to the best of my ability – tell him that I was perceiving his actions as him not giving a crap about me and that was the basis for my constant complaint that we just seem “dis-connected.”  I mean really, how could you just roll over and go to sleep when someone you care about is having trouble breathing?

Once I said something. He asked if he should close up the windows in case it was allergy induced.  I agreed and he trudged off without a word while I raced for my inhaler.  He returned to bed after closing windows just shortly before I did and was all settled in again.  I was still fighting for breath, waiting for the albuterol to do it’s job and it hit me that his actions in this scenario were the root of me feeling like he doesn't care about me. 

I have to stop and tell you here that I believe that if you love and care about someone, you don’t have to tell them what you need because they are invested enough to know you and so they offer the kind of support you need without you telling them …and that’s what makes it so amazing…they care enough to know you and know what you need.  – Now, before you freak out I will admit that my line of thinking may be a bit Cinderella Syndrome based, but I do this for those I care about, so I expect that from those who care about me. 

So here’s what happened.  Instead of getting steaming mad and super hurt about him not caring and not giving me what I needed.  I decided to just tell him that his reaction – or lack thereof – was hurtful to me.  I also told him that I didn't understand laying next to someone who was struggling to breathe and not saying something like, “are you ok?”  “can I help?”, etc.  He replied with, “But I got up and closed all the windows.”  To which I replied, “Well trudging off seemed more like forced action more than concern and caring to me.”  I told him that I wanted/needed more than what seemed like irritation to me.  I needed concern and compassion.  I needed empathy and care.  He replied, “I do care!”  I retorted, “It doesn't seem like it!” And then, after a moment of silence he said something very important.  He said:

“I guess I’m a bit desensitized.  You always hurt.  There is always something wrong.  I’m just used to it.”

I was stunned for a second.  Then I was hurt.  I mean, DUH! I’m the one living this hell.  I’m the one that is in pain every second of every day.  I’m the day that still faces each day with a decent attempt at focusing on the positive despite wanting to just curl up and sleep. 

Then he went on and said, “I take my health for granted.  I think everyone does unless they face something like this.” 

This was a really profound moment.  It has been so long since I've felt “good”  - screw that – It has been what seems a lifetime since I’ve known a moment without pain – I can’t even imagine what it must feel like.  My focus is on making thru the next hour – 30 minutes – or sometimes the next breath.  I don’t know what it is like to think about planning an activity or event and not having to consider if I can physically take that challenge on.  Let me be clear here – I’m not taking about climbing a 14ner or running a marathon – I’m talking about the physical challenge of having the stamina to make it thru my shower, or the ability to attend a cocktail hour with friends, or sometimes it is just planning how to make it thru what some would consider the mundane events of a normal work day.  It isn't that simple for me.  I have to consider what is possible and weight out in my mind what I can consider taking on and what I have to let go of.  I have to prioritize simple life tasks to even consider getting thru the day.  An honest assessment usually means, 99% of the time, that I scrape by with the bare essentials of the day and don’t have anything left to give the extras like meeting the girls from work for a quick gab after work, or a quick stop to pick up something from the store, or a simple load of laundry before bed.  Those things take a back seat to me just trying to get by….just trying to make it back to the bed where I can collapse…and start preparing myself mentally to do that all over again tomorrow…and have a positive attitude about it. 

What sometimes eludes me is understanding that people really don’t get it.  I’m guilty of it myself.  I have a good couple days and suddenly I forget that I struggle to just get by most days.  Of course people who have their health aren’t going to get it. 

The hardest part for me is that I desire that understanding and validation that most people can’t give.  In the majority or cases, I don’t think that they don’t care – they just don’t understand.  My husband cares.  Deep down, I know that…but I also know that he just doesn't get it.  The difficult part is figuring out how to help him understand without feeling like I’m telling him what to do. 

And so it goes that I have to dig deep and console myself and find a deeper well of inner strength to propel myself on because no one else is going to do it for me.  No one else knows the extent of the personal hell that I live daily…and I wouldn't want them to!