When medical s--- gets in the way

I don’t like cussing in writing.  The more you do it, the less impact any cussing has.  So, why did I cuss in the title of my second post?  Because “medical shit” is a term in and of itself.  It encompasses all of the things that can go wrong medically with a body, especially those outside of your control.  I’ll do my best to keep the cussing to solely this term.  

I take about 16 pills a day.  Some of those are for small things that improve my quality of life.  Some of those keep me alive.  

Society for the longest time told me to hide the problems I went through.  It’s partly the reason I went undiagnosed and just suffered with so much shit (same use of term) for so long.  I thought a lot of it was just normal for me and not a big deal.  I didn’t want to make a fuss.  I didn’t want to take time off work.  I didn’t want to fold medical expenses into my budget because it was always a bit too tight anyway.

So, about 5 years ago, I started actually going to my medical appointments and started tracking down all of my issues to get them sorted as best they can be.  I had to take a lot of time off work, and yes, my boss did call me into the office and it was a problem.  Because they knew about some of my shit but not others and were all “you’re going to the doctor again?”  “Yeah, different specialist, different issue.”

It’s not usually a great conversation to have with your boss saying, “IBS is the reason I run 5-15 minutes late to work on any given day.  You could say I had another…  shitty morning.”  Ba-dum-tiss!  Yeah.  Not the appropriate-for-work conversation.  

I’m getting off track.  I do want to talk about all of my diagnoses and symptoms over the course of this blog, because it is all a part of my life that can impact my life anywhere from daily to months-apart episodes.  But today, I wanted to talk about something I don’t take a daily prescription for and that I didn’t realize wasn’t just a “bad headache.”

I have something called Occipital Neuralgia.  No, I can’t spell that without voice-to-text help.  

I thought it was a tension headache.  It starts in my neck and the base of my scalp.  Everything just clenches and only relaxes when I specifically concentrate on nothing else but specifically unclenching the muscles.  Which you can’t really do if you’re, you know, working, standing, doing anything else… The headache would start in the back base of my head, then slowly take over my whole brain.  When it gets bad it gets all of the happy migraine symptoms.  Light, sound, nausea, and horrible, horrible pain.  Just not on one side of the head.  The whole thing.  Eyes to shoulders.

I would take ibuprofen (I do have a prescription for that, it’s a lot cheaper than buying OTC and I highly recommend talking to your doctor about that if you use it a lot, like I have to), drink a full glass of water, lie down in bed with a cold washcloth over my eyes and head and try to sleep.  Because if I was asleep, it didn’t hurt--or rather, I wasn’t awake to experience the hurt and I would have to endure less.

Apparently, when you have Occipital Neuralgia, cold is absolutely not what you want to give it.  It is caused by inflammation of the nerves in your scalp.  What causes that inflammation?  Who knows!  My body just hates me.  But the lying down in a dark room and ibuprofen are definitely good.  Heat, though.  It wants heat to... I don’t know.  I don’t understand why adding heat to the nerves would make them stop inflaming.  I’m sure someone with more medical knowledge does.  All I know is that now, I can take a hot shower with a shower cap and have all that heat pour over my head, or go to bed with my head on a heating pad and that helps it not last as long.  

When it happens, it’s still usually a dayender.  All my plans, no matter how important they are, suddenly get pushed to a “how important is this really” crisis-level priority management and it ends with I go lay down and hurt.  

That is what happened on the day that I was planning to write my second blog post.  So, my body won’t let me necessarily do a set number of posts per week or anything like that, although I’ll do my best to keep on top of it, because that diagnosis is one of several that have gotten in the way from the last post to this.  Because that’s what it’s like to live with chronic illnesses.  Sometimes medical shit just gets in the way and there is nothing you can do about it.  

And it is so.  So very.  So very very frustrating.  

It makes me so frustrated with my body, with my brain, with my self-worth and sense of accomplishment.  Because sometimes my body forces me to do “self care.”  Not in the happy “I’ll go get a mani pedi” or any kind of fun way.  But in the “I’m going to be in the bathroom for the next 45 minutes in massive amounts of pain” way.  Or the “I know we had plans, but I need to lay down for the next 15 hours in the dark and maybe be so nauseous that I don’t even remember to eat anything” kind of way.  

It makes me feel so inadequate.  So lazy.  So weak.  

And I know.  I know that a lot of those feelings are internalized ableism.  I get that.  And I know, looking back on what happened during the week, yeah, there were some times that I chose to do other things instead of this, but a lot of the time, I was doing other things that I also needed to do.  Like take care of myself.

I’m trying to be gentler with myself.  But finding balance has always been a struggle for me.  Black-and-white or All-or-nothing thinking is what it’s called in Cognitive Behavioral Therapy.  I’m trying hard to fight against that cognitive distortion and just be okay with falling somewhere in the middle of All and Nothing.  But “Depression is a liar” is one of my mantras because it is true and my Depression has gaslighted me for just about all of my life.  I’m getting better at catching it when it’s lying to me, but this means I have a huge time trusting myself to know when something is “good enough.”  Is that my Depression making me give up?  Is that me being too easy on myself?  What does “good enough” actually look like anyway?  By default, I’m forced to compare myself to others, which is also not great for my self-esteem.

Wow.  Today’s topic kind of got away from me.  It went to places that I didn’t expect it to go.  But I think that is kind of the point for today.  That I can have plans.  I can have good, thought out plans, and then life happens.  Everyone knows that.  But when you have plans, life doing the life thing, and several diagnosed chronic illnesses, it just makes it all harder to stick through with your plans and actually feel accomplished as you complete less than the other people around you.  It’s so easy to feel less when comparing yourself to others because what is your best doesn’t look the same as other people’s.  And that is a hard thing to live with.