It’s a small world

My nature includes a strong sense of self composure and discipline.  Oh that’s not to say I don’t act like an idiot, I surely do.  But here’s an example of what I mean, as it relates to someone else’s sickness.

In 2003, my then live in boyfriend, T, got very ill.  He had type 1 diabetes and so any serious illness was always extra troubling, even more minor ones could mess with his blood sugar in bad ways.   This particular time, T woke up in the middle of the night with intense abdominal pain.  He proceeded to power puke a few times and just had that “oh boy are you sick” aspect.  So I took him to the hospital.  Lots of screwing around in the ER.  The only thing of note (aside from his sugar being high, oh yeah and the horrible pain that he still was in despite the morphine) was that his lipase was 10 times the high end of the normal range.  After much debating, the ER doc admitted him.  He was in the hospital for a week while they ran various tests and waited for the pain to subside and the lipase level to come down.  Our apartment was a half hour drive away, and it was winter.  We were both in grad school and I remember that despite having a large group of friends, and despite T’s family being local, I was having a hard time finding someone to go to our apartment and feed my cat while I was at the hospital with T.  T’s mother and grandmother were at the hospital as much as I was.  I would come in the morning before class or having to feed the cat because if you aren’t there in the morning, you miss rounds and you have to rely on your drugged up loved one or his useless family to tell you the details of that day’s medical events/doctor thoughts, leave, then come back and have dinner with T and go over whatever results were to be had, then go home.  Leaving him was hard.  Not being there when the doctors randomly showed up to report on some test was hard (T’s family were useless with medical information.  it slid off their brains like water off a duck’s ass), going home and going to bed instead of staying up all night on the internet looking up tests and doing what I call “functional fretting” was hard.  But I did leave, I did go home and take care of our lives so it wasn’t a mess when T got out of the hospital, I did feed myself and sleep so that I wouldn’t also get sick (I had fatigue, hypoglycemia, and joint pain but overall, my health wasn’t as bad then – the GI stuff didn’t kick in until mid 2004, the spontaneously and chronically subluxing hip not until 2005, the overheating/flushing not until 2008).  Let me repeat:  it took an immense and very pointed effort to redirect some of my energy to taking care of myself so I could take care of him but I did, because that, as they say, is how I roll.

So here we we are in 2012.  Taking care of myself is a full time job.  When I say I have a strong sense of self discipline, what I mean to say is that I have all the normal desires to do and go and live outside a small, narrowly defined world but I also have plenty of experience at giving in to those desires only to find that I have to give up doing something else, like say, working.  Just like with T, I end up in a sort of divided mental state.  I am patient and nurse for myself.  Nurse is the best word I can think of since it combines aspects of social worker, occupational therapist, and parent.  I have to tell myself “hey dyspatient, I know the house is a mess and you really want to do nothing more than spend the next three hours immersed in a two-story cleaning fit, but….you did that a few weeks ago on a short work week no less and you were exhausted and in pain going into the work week.  Every day of the week, you had an episode of near syncope at work.  Remember how much that sucked?  yeah.  All because on the weekend, you overdid it.  You got so wrapped up in cleaning that you put off eating until you were done with just this one more thing, but one more thing lead to one MORE thing after, and the next thing you knew, your blood sugar was 61 and you had drank nothing but coffee until after noon.  Consequently you were staggering around like a drunken fool which meant you over reached and positioned yourself badly while you were sweeping, scrubbing, and vacuuming and ended up pulling several joints out of whack so badly that you had to use a cane the next week….so how about we NOT clean today?”

The patient in me says “but surely I can clean a little…”  And the occupational therapist says “no, other people can clean a little.  You, apparently, cannot.  And until you find a way to clean just a little, you are forbidden to clean on the weekend before a busy week that you need all of your limited resources for.”

You know what else the patient would like to do?  Go out to brunch with an old friend.  But if I do that, I may exhaust my day’s energy.  It feels like a low energy day, and I need to conserve some to help make food for the week.  So no brunch for me.  It’s laundry, rest, eat, rest, cook, rest, cook some more, rest, fold clothes, rest, eat, rest, bed.  That’s my agenda.  It makes for a small world.  Couch, bed, bathroom, and kitchen.  Husband and cat, and no spontaneous brunch with a friend who may not last much longer since I never seem to be able to go out.

This is not a pity party.  And I’m not feeling like it’s all on me.  I’d actually be much happier if my friends could configure their expectations around my abilities and not get their noses bent out of shape if I can’t go out.  We can still talk.  My many rest periods allow for a phone call.  This is just me thinking about these choices I have to make.  I do feel that I have a choice, and sometime I choose to overextend.  Not today though.

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  1. I really enjoy reading your posts – it’s like the greatest support ever (sorry, don’t mean to sound selfish – not about me really)! Just before you wrote in the last paragraph, I thought “Wouldn’t it be nice if your friend showed up with scones or something and you could just sit comfortably (maybe with a blanket and pillows) and you could both chat while sipping on a latte…”. Because “I know”, if I were your friend, that is what I would do. 🙂

    • Thanks S, that is sweet. I have some friends who would do that, but they are far.

      And I’m glad it makes a personal connection for you, we need that from each other.

  2. Gosh, this is a great read. Thanks for sharing it. Miss you!

  3. Oh Boy! I feel the same way so often. You feel a little better, and you overdue, and then get mad at yourself….but do it again another time. I have a friend whose Husband is chronically ill, and she is the perfect person to have around. She gets it, and allows me to move forward, or backwards at my own pace. Only problem is she is 2 hours away. There are no answers. Take it easy.

  4. I like reading your posts because you sum up things perfectly. I have to pick and choose how much I socialize, vs. taking care of myself and health. Yes, I have had many friendships suffer, but the ones that are still going strong are the friends that have educated themselves about EDS and all my other problems!


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