Tuesday, November 13, 2012

The Simple Truth About Living With Chronic Illness

Every day I lead a hidden life. I'm full of secrets.  People who see me out and about think I'm full of energy. I talk a lot about all the things I do.  Then, when I disappear for days people assume I'm too busy, off doing something fun, or maybe just moody.

Where am I during those days?

On the couch, usually with a bottle of ibuprofen and a heating pad.

There will be weeks when I'm at the gym every day.  Hours and hours of volunteer work.  There are times people look at me and ask, "Where do you get your energy?" or "Have you considered going back to work?"  Well, the answers are simple, I use (or borrow) whatever energy I have during the day to live THAT day to the fullest.  And yes, every day I feel well, I think about going back to work.

This morning I awoke at 6am... late for me.  It's now almost 9, and while I've managed to make myself some eggs and tea (about an hour ago) I still feel too shaky and weak to risk heading into the shower.  I can now close my hands almost all the way, since the swelling is slowly going down, and the headache I often wake with at this time of year (dry air leads to swollen nasal passages leads to breathing problems while sleeping) is just about gone as I remain as upright as possible.

If things go well, I'll be showered and dressed around 10am, and able to get out and do the grocery shopping.  I'll have to test my blood sugar frequently today, since over the last couple days nausea has made eating difficult, and with hypoglycemia, that can be problematic.

I don't have a handicapped tag on my car, even though I'm eligible for one.  My feeling is as long as I can walk, I'm going to do it.  Yes, there are days I'll circle the parking lot for a closer spot.

When you see me stumble, or holding onto the wall, it's not because I'm drunk. As a matter of fact, I don't drink at all.  So please try to restrain yourself from smirking or laughing when you see me lacking in coordination.  There are three reasons this happens: (1) When my blood glucose gets low, I get faint.  (2) sometimes it's difficult to move fluidly because of the joint problems associated with lupus, arthritis and age, and (3) sometimes I'm just in such severe pain that basic movement is difficult.

It's hard for people to reconcile the two mes.  They only see me when I'm energetic, or faking it.  Days like today?  I'm all alone, sitting here with the cat.

No one knows the sick me.  When I say "I'm tired" or "I'm not well" it doesn't mean I have the flu, a case of the blues, or just don't want to go out and do X,Y, Z.  If I'm able to do them, even if I'm in pain, I do them.... with a smile on my face.  If I'm not smiling... if I'm not out and about... it's because it's bad.

Like other people with chronic illness, I get judged a lot. Because there are no tubes coming out of my nose, because I refuse to walk with a cane (until I absolutely can't walk without them), people think it's not that bad.  Even my daughter seemed distinctly embarrassed and annoyed the other day when I was looking at canes again... but I see it coming to that very soon.

People lose patience with the chronically ill.  It's always "WHEN will you get better?"  Well, the answer is "never, but I might have a better day coming up."  There's no cure.  There's no set path the illness takes so that I can say "on July 26th, 2013 I'll have enough energy to really enjoy the reunion" or "in five days I'm going to crash, let's do it today instead".  There's no crystal ball I can look into and see if I'll be home on the couch on any given day, or our hiking in the mountains.

But shhh... it's a secret, because people don't want to hear that they know people who suffer with pain or disability every day. They don't want their stereotypes and assumptions invaded with the knowledge that I don't suck on hard candy all day because I have a sinful addiction to candy, but because I'm trying to keep my blood sugar high enough to keep functional.  They don't want to think that it could happen to them, that there are really people out there whose day to day balance is that precarious that they can be feeling as fit as a fiddle one day, and in horrendous pain the next, with no apparent cause or trigger.

And of course it all touches on that most taboo of subjects: the fear of dying.

Yes, Lupus may eventually kill me. Yes, it may be that some day I won't be able to control my blood sugar or get to the phone and dial 911 before I pass out, and that I won't wake up.  I've already experienced some temporary blindness during the time my brain was shutting down as my blood sugar plummeted in the 20s.  That, BTW, is now the reason there is hard candy and fast acting glucose tablets in every room of my house.

It's not just me. I suspect everyone knows someone like me.  People they tend to see only one side of, because the other is too uncomfortable to look at.   Just once I'd like to have someone say "I acknowledge the other you".  Maybe not be comfortable with it... but to just accept that it's there, and stop assuming that every day is a good day.