on my own

Anticipating that this week would be tough and I would not be up for much, when my husband’s siblings suggested a trip down to visit them this weekend to celebrate their birthday cluster (starts in mid-February and ends in mid-March), I had indicated I probably wouldn’t be up for it.  Husband has gone though, I don’t resent his wanting to see them.  And I don’t resent his going.  I do have some ambivalence about the siblings though, because I know my absence will not be seen for what it is and will instead be seen as some slight.  I’d like to think people don’t misperceive like this and that they don’t “keep score” but interactions with my own family, with his family, with my ex’s family, and with various friends informs my knowledge that it is otherwise.

On the “plus” side, well, sort of plus, I am correct.  Last night, I just sort of fell apart.  Systolic blood pressure in the mid to low 80s?  Check.  balloon animal gut any time I eat?  Check.  Burning sore roof of the mouth that looks bruised?  Check.  Swelling burning hands and feet?  Ringing ears and stabbing headaches?  “Swooning” even when I’m laying down?  Check, Check, and Check.

I got through the week, the busy week, but I am taxed.  Working through two days of migraines from the weather, sleeplessness, and stress took a lot out of me.  The stress comes from continuing staffing problems with a coworker who I am asked to effectively supervise but over whom I have no actual supervisory authority; an impromptu meeting with my boss yesterday to tell me that he was penalized in terms of his job security for advocating for an accommodation for me; and a handful of rotten encounters with various just plain old rotten people.  Did  I mention it was busy anyhow?  Just normal job busy.  But then there was all this crap on top of it and it made for busy + bullshit, which = all used up.

And so it is with chronic illness – my “wealth” of energy has been spent on things both necessary and unnecessary (bullshit), and therefore is not here for me now.

I wish there were a way to convey the validity of this experience to people who have the luxury of distance from it.  Knowing that I am going to be judged negatively makes staying in and nursing myself on this beautiful sunny Saturday more difficult than it already is.  If I were a less responsible person, I would go. Or I would at least go out and do something.  E.g., my nails could use a once over.  I could meet up with old friends who would want to go out to dinner or to a bar.  It is tempting.  But I know what it’s like to pass out in public, or to get acutely unwell and need to drive myself home in a nausea, pain, or scrambled head induced stupor, to stagger in and lay on the couch or the bed bargaining with my bastard-body, “Just don’t puke, don’t pass out, ride it out, it’ll be ok…shhhh…I’ll hold really still and it’ll stop….shhhhh….shhhhh”.  And I feel that if I know this is likely, it is completely irresponsible of me to fail to seek to avoid it.

Oh, and as much as it sucks to have this happen when I’m alone, the jury’s out on whether it may actually suck more to have it happen with an audience.  You want to think that people would step up and take care of you when something like that happens, but truly, as well intentioned as they may be (and that is sometimes questionable), my experience is that they usually fail to act or fail to appropriately act.  From my little brother reacting with embarrassment when I passed out in the plane seat next to him on a school trip to Europe, to a nurse friend leaving me sitting at a table alone while she called 911 when I passed out while out in a restaurant, to my most recent ex acting like a blood sugar noob when I had a bad hypoglycemic attack at a party (despite his being a carefully controlled insulin dependent diabetic for almost 20 years at that point) – I have found that a very large number of people cannot take care of someone who is acutely and (apparently) rather spectacularly ill.

color photo of a brown tabby cat sitting next to open sunny window and looking up at camera

can we go outside?

So I stay home, and try not to be bitter.  I’ll pay my bills.  I’ll eat my salty food and drink my gatorade and water.  I’ll watch stupid things on Netflix and Hulu, read, play solitaire, play with the cat, read some more, and maybe I’ll pull it together enough to make one trip out to do an errand – the preparation for which will be more like planning a 2 day road trip.  Pharmacy?  Nail salon?  Or (gasp) both!?

I know this sounds all deep dark and despairing.  It sort of is and sort of isn’t.  I see the deep dark despair there, and while I’m acknowledging it, I’m not exactly welcoming it in.  I’m here, it’s here, it’ll go away again and I’ll remain.  So it goes.

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  1. Oh my gosh, I’m so sorry for the stress. I totally hear ya, it turns you into a hermit; thankfully I was a bit of one before, but at least it was BY choice then and could go out whenever… You put it so well “I wish there were a way to convey the validity of this experience to people who have the luxury of distance from it.” I want to mass email it out to all the ppl who don’t get it. I love quotations and I’m officially adding YOU to my quotation book 😉

    I wish it wasn’t so offensive to people when we need to bow out or be limited due to illness. I don’t want to offend anyone but I’d love to catch a break on the insurmountable guilt piled on top of already despising oneself for being sick. BUT, hopefully we’ll be better soon??

    • Thanks Ana!

      It does help a lot to know there are other people who get it. It’s sad to know you get it because you feel it too though.

      I vacillated between being a hermit and being gregarious – I used to host parties, not a lot but 1 or 2 a year. I miss that. But what I miss most is my stamina and self reliance, which I guess is why I seek to limit the situations where those will be strained or absent.

  2. That’s so funny. I used to be the one or twice a year party thrower as well and thought of myself as social but choosing solitude the rest of the time. I hear ya I used to think of myself as so independent and strong. Well, I’m a bit of a mess now and I agree, it’s not fun to be reminded of that.

  3. I think your writing about this is very worthwhile. And you’re right, it IS hard to react well when people are sick and you’re not – I sometimes look back at my inconsiderateness and feel a bit squirmy.

  4. queenofoptimism

     /  May 12, 2012

    Coincidence – at the time you wrote this, I was going through the same thing at work re: the authority and being told I was compromising someone else’s job. Wish I was here for you instead of hiding in my little world like I did.

  5. queenofoptimism

     /  May 12, 2012

    Love this!! : I’m here, it’s here, it’ll go away again and I’ll remain. So frank. So accurate. And, yes, I’ve come to the same conclusion that there’s no one to help us – friend or stranger. Sadly, it’s old longterm friends I am coming to accept recently due to a deluge of keep in touch messages that end in a no reply after I mention anything that mat be minimally tough to swallow.


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