Fuck lupus and the people who just don’t get it

Once again it’s been awhile, and as always, I have no good excuses.  I should write more, I should be documenting T’s precious life as he grows up way, way too fast.  

But lately (always?) I have no energy for it.  I am stuck in this rut of not feeling good emotionally or physically, but also not so bad that I can’t function, just enough to function at a low level where I’m present but just kind of bad at every aspect of life.  

Basically since my last post in September I’ve had one illness after the other.  A bad upper respiratory infection that literally went on for six weeks and of course as I was about to get better, my little germ-infested monkey came home from preschool coughing up mucho phlegm.  And yup, I got that too.  And about two weeks ago that finally culminated in a raging ear infection and the crescendo – a ruptured right eardrum. 

Please imagine someone slow clapping here for a moment. 

The sheer pain of the ear infection sent me to an ENT immediately so I got all the good antibiotics and what not and am now on the road to recovery (I hope) and yet now I appear to have developed some kind of delayed reaction to the antibiotics (which I’ve already finished) causing me to break out into hives all over my face and legs and trunk.  



Being sick for so long has left me pretty emotional.  Luckily the lupus side of things has been somewhat quiet through all of this but it is not lost on me that spending eight weeks sick with a viral (and later bacterial) infection is likely one of those things that happens when you’re on immune suppressants.  It’s one of those things healthy (or healthy-ish) people just don’t get.  Everyone in my office has been treating me as though I’m doing something that’s making me stay sick for so long.  Well perhaps I am.  Perhaps this all goes back to lupus and my spoons after all.

Bear with me, I know this post has been disjointed and will likely continue to be but I know where I’m trying to go with all this.  I think.

A couple years ago my company asked me to give up my four day a week schedule and go back to full time – the caveat was that I would still have a fair amount of flexibility to take days off (beyond my allotted vacation days) and work a little bit of a later schedule (getting in at 6am – wow so late! /sarcasm).  Since then, as anyone could have predicted, my flexibility has been chipped away at.  I get in at 5-5:30am now on days when one of my partners is out, this is a fairly common occurrence since the people I work with travel quite often for work.  So there are a non-insignificant number of days now where I’m having to change my schedule to get in the office by 5:30 or earlier (sometimes 5am, and sometimes the god-awful 4:30am).  

The final straw came this past Friday though as I was prepping the office for my upcoming vacation.  My boss kept reiterating over and over again that the reason my “back up” situation this year has been weird is because I took more than my allotted vacation days and that that won’t be happening next year.  I couldn’t stop myself.  I had to speak up even though we were in front of others.  I mentioned that when I came back to working full time I was explicitly told I would have flexibility for days beyond my vacation days.  After a brief discussion with my boss I think I’ve come to the conclusion that I need to request a formal four day work week again.

Yes, it’s less money and yes it raises the likelihood of me being let go if there is another round of layoffs but I see the writing on the wall and if I let them, my company will push me into a situation where I’m burning through my reserve spoons every day, never have a real chance to build them back up again, and at some point I will just crash and burn.

I fucking hate having an invisible disease.  I really do.

I hate that the people in my office can’t see the limited number of spoons I have for every day and that I’m using way too many on dumb office stuff. That I need these spoons to LIVE, to try and have a good life that isn’t marred by pain and exhaustion and muddling through each day but to actually get to LIVE and experience life the way others do.

Sometimes it’s the smallest things that make you feel the most alone.  Like the fact that I have to worry about that sunny block up ahead because I don’t have my hat with me today, or maybe I do have my hat so I have to be sure and pull it out and put it on before the sunny patch.  

I hate how even my husband who has seen me so crippled from pain that I couldn’t move or do anything other than cry in bed doesn’t always seem to remember that I am not just a normal healthy person.  That I need to do everything in my power to never be back in that much pain again.  

This disease is really fucking isolating.  

If you are a real person with lupus reading this, I’d like to be your pen pal.  I need to talk to people who actually really get this and what it’s like to go through life hoarding spoons from jackasses who don’t even get why you need your spoons.  

Drop me a line would you?  Transcended77 at gmail

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