Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Tuesday, June 16, 2015

Happy Sickaversary to M.E.

Well June 16th was the day I came down with a bad case of mononucleosis in 2002.  While I was stressed out at the time (I had a lot on my plate) I wasn't physically ill until Sunday June 16th 2002.  It wasn't like feeling "off", it was like being hit with a brick in the head.  Fever, sore throat, dizzy, shaky, sweating.  So it's my sickaversary.   I've been ill every day now for more than a decade. I'm a completely different person due to suffering a disabling case of M.E.  But it was so long ago now that I became sick, it's hard to remember that other life.  I had no idea how lucky I was to be able to work, play, socialize, drive.

I've been visiting my folks who are getting quite old, and are in poor health.  However, there's not too much I can do to help as I'm ill myself, and not up to outings.  I brought the dog down which makes for a slightly more strenuous travel day, although having her here is wonderful.  She provides me with company, entertainment, and emotional support.  I'm SO glad I brought her.

I had a horrible flight down as the gentleman in the seat next to me took up a seat and a half he was so large, quite literally, he was using 1/2 of my seat.  (The plane was completely full, so no chance of moving).  I had to sit cross legged with my torso turned sideways for 2 1/2 hours.  Our destination airport was shut down temporarily as well, so we had to sit on the tarmac in T-bay for a 1/2 hour before flying. My body cramped up so badly, that it took a while for me to walk after the flight, not to mention the severe tachycardia from POTS.  However, after two pretty bad crash days, I was mostly back to normal, which is still sh$t, but not so ill that I was laying here all day just hoping I'd die.

My mom, despite being on oxygen for severe emphysema, has manged to crawl around dragging her oxygen tank and to some degree maintain her amazing gardens.  I call this the "nature preserve" as my parents feed a variety of birds out front year-round as well as rabbits, chipmunks, and squirrels.  Then add the manicured lawns and flower gardens!  Maybe I'll take some photos to share.

I love how when you have a chronic illness that involves weakness/fatigue, people in your life seem to constantly tell you how tired they are. (I've heard this a lot this week).  On the one hand, I don't mind lending an ear, I've really appreciated lately a few people who've shared their health challenges with me. I don't mind hearing about others' struggles with health or energy. On the other hand, when someone tells me they're exhausted as if to compare, in most cases I realize how clueless and in some sense, unappreciative of their health and abilities these people are.  As well, how clueless they are about the type of weakness/fatigue from which I struggle. It's when they think they're commiserating that I get cheesed-off.

I watch these people run multiple errands, go to work, talk on the phone for an hour, eat out at a restaurant, drive, go for a run or walk, cook meals, bathe, all in the same day!!! etc. etc. I am amazed how oblivious they are about true disabling exhaustion.  Lucky them.  While I have no doubt they are "exhausted", really, I believe they are exhausted,  I know for a fact that it isn't anything comparable to what I suffer. If it were, they'd be disabled…so weak from illness that they'd be un-able. Unable as in, even if they  "have to" get something done, they wouldn't be able to…they'd be too utterly exhausted and weak despite good intentions or amazing motivation - hence dis-abled.

2 comments:

  1. i am convinced that experience brings people together, also separate them. without personal experience with this monster illness, one can hardly have idea what kind fatigue we have (had) been through. i used to get frustrated when people attempted to compare my condition with theirs, it is only now, when my condition changed so significantly, i found myself more tolerate to such ignorance (or course, we're all ignorant in a way).

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  2. Yes...you've described this so very well. I have had this very discussion several times and getting across to them, the point of how fatigued I am is impossible. One of the worst comments I hear, is, "If it were me, I'd just push on through" ummm...ya... *that* statement shows just how little they understand about it all.

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