Melvin & Me, Part 28: Crohn's 103, the Long Haul

Here's the hardest thing about having a chronic condition:  it's CHRONIC.

There is no end.  There is remission, hopefully, but it's never actually over.  Even when I haven't posted something explicitly about my ostomy or Crohn's in MONTHS, it's still here.  Still a thing.  Still always on the backburner of my mind.  Still part of every decision I make.  Still part of my very real panic as I hear politicians arguing about healthcare policy and knowing that I could easily be a month away from complete disaster both financially and whether I'm even alive at the end of the year (Medicare for ALL is the way forward, folks).

This is important for a number of reasons.

• Mentally, even when things are going well, I'm preparing for things to take a sudden turn for the worse.  It's tough to balance that, to be prepared and mindful of signs without hypervigilance, to the point of obsession.
• I understand that for some baggage it isn't a matter of getting rid of it, but rather life is about finding better ways to carry it.  I will always need to find ways to balance the mental load of dealing with a lifetime of balancing my doctors' appointments, bloodwork, new medications, procedures, ostomy supplies, and all else.  That's a process, and it takes a lot of emotional energy to sort it out.  For the rest of my life.
• With aforementioned baggage, there are good days and bad days--I have to constantly re-accept my circumstances.  I still need to take time for a pity puddle on occasion and give myself the freedom to honor those feelings when they occur.  I don't always communicate these waves well, and have a real propensity to smile over them.
• There are times in my life where I have and will continue to need to put parts of my life down for a moment in order to take care of myself.  That hurts in different ways, needing to say no to things, culminating into a very real fear of missing out.
• My body's needs are different from day to day--sometimes, I have the energy to conquer anything and others I'm running a bit low, without a pattern.  These levels are significantly more consistent than they used to be, but I know this won't always be the case.  
• My internal pain scale is a bit skewed--this means that I don't always seek help when I need it because even urgent things aren't as bad as, say, a ruptured organ.  As such, there are some times that I could be in what someone would think of as significant pain and not really register it the same way or shrug it off to my eventual detriment.  
• Some people cannot shake the "fragile" vision of me, seemingly always assuming that I need help and/or will need constant tending.  Instead of asking me what I can do, it's implied that I have to approach all things tentatively or am incapable.
• Some people forget that just because I'm not "acting sick" doesn't mean I can do everything.  Instead of asking what I can do, it's implied that I should be perfectly fine to do something without modification or acknowledgement of my energy level.  

Those last two are important, and there is a delicate balance there between feeling like I'm being treated like an invalid and between feeling that my needs are not taken into account.  And resolving the frustration can be as simple as a quick addition of "if you're up for it" or some other kind of out.  I can take the out if I need to or quickly reevaluate my energy levels and re-calibrate accordingly for the latter.  Specifically, I would also want it to be an honest check-in and not a nicely veiled demand--a question that you cannot say no to isn't really a question.  A small acknowledgment can make a world of difference.

Truly, it's the assumption or the demand that bothers me most.  I don't need my body's needs to be the focal point of all decisions, but it's nice to know that it is considered.  Any time someone assumes that they know how I feel, that rankles me sixteen ways til Sunday.  Assuming that I won't have enough umph to do something has just triggered that stubborn streak, too, where even if it's a bad idea I'm inclined to do it out of spite.  Assuming that I'm going to be just fine may be more commonly correct at this point, but I can feel a little trapped without that out--making it a choice instead of an expectation increases my joy of the event.

This is a marathon, not a sprint.  There will be good days and bad days.  It's always a part of my thinking; it's always a part of my life.  To understand me is to also acknowledge those pieces, but to find a balance to similarly not obsess about them.

And we've got as much time to practice as my life lasts.