My "Pal" ... Ms. Chronic Fatigue

ALERT! ALERT!
The following sentence is my OPINION...

Unless you have had this... you are not going to "get it".
Chronic fatigue is an incredibly disabling symptom of lupus.
The most frustrating factor of this symptom is the fact that folks can't SEE it.
And most of us humans are wired with "if you can't see it, it's not real."
So there is a load of persecution and accustaions of laziness, hypochondriasis, "overworked", "overstressed", "depressed" or what have you's when you are waiting for a diagnosis of systemic lupus.
I can attest to YEARS of being dismissed by the medical profession and many people who knew me personally.
IF YOU CAN'T SEE IT, IT DOESN'T EXIST.
Even after diagnosis... people still usually don't get it.
That is probably why I am seeing a lot of lupus bloggers now referring to lupus as one of a myriad of "invisible illnesses".
I was at the psychologist appointment last week, and I was sick as a dog.
But, you would never know it to look at me.
I did my hair, picked out some nice clothes,put on some jewelery,  I believe I may have even put some make-up on... just like anyone else going to an appointment...
but...
It took 11 medications before getting out of the door on that appointment morning to actually get me out of the door.
And guess what?
The psychologist whom I had personally handpicked after consulting with several of my professional colleagues said,
"Gee you wouldn't know you were sick to look at you."
ARGHHHHHHHHHHHHH!!!
What am I supposed to do?
Put on a sackcloth, roll around in some ashes and grimace a lot?
I guess people say that to be kind?
But, you know what?
When you say that to someone with lupus who is trying to tell you how deeply they are suffering on that day...
well, the comment comes off as a bit dismissive and invalidating.
Here's the proper response:
"I'm so sorry you don't feel well. You do a really good job of being strong about it. Is there anything I can do to help?"
TA-DA!
Here is a great article about chronic fatigue:
BBC NEWS | Health | Medical notes | Chronic fatigue syndrome/M.E.
The article is British so you will see some "British-isms" in it.
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Prayer Request Update:
Please visit Seven Thousand Prayers - Love in Action today.
There are some folks who really could use some extra prayer support right now.
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Loretta Update:
     I was offline a LOT last week.
     The computer is finally "fixed". But, that is a relative term.
     We lost a ton of stuff and it is going to take a long time to navigate through. I am astounded at how much the computer and being online has become integrated into my daily life.
     Being housebound has made me reliant on social contacts through correspondence.
     In the "good old days" we would have called  all of this penpals.
    Well, I deeply missed "penpalling".
    I am happy to be back online... even though everything is still looking pretty topsy-turvy as I try to set up AOL the way I used to like it.
    Ellen's memorial Mass was on Saturday.
    I don't feel like writing about that.
     Way too private, but relevant when I say that the lupus is probably the worst it has been in a long, long time for me.
     After we got home on Saturday, I hit the bed. Stayed there and slept, slept, slept... pretty much straight on through until Monday. I only got up for an hour here or there.
    That is FATIGUE.
     On Monday my life odometer flipped to 43.
    Yippee!!!
    I am old.
     I like it that way and wouldn't trade with anyone.
     People don't celebrate aging enough.
     I like being 43 thus far.
     Nope... can't complain.
     Hubby, Little Bear and I celebrated by going to see Wallace and Gromitt at the movies.
     Little Bear does a wickedly good Wallace imitation.
     It is pretty funny to see your 6 year old going about the house talking about cheese in a British accent.
    Speaking of Little Bear...
    Sunday moring, I did park myself on the recliner for awhile just to be out in the living room.
    Little Bear noticed how bad I was feeling and asked if he could get me anything.
    I told him no it was okay, but he insisted.
    He ran into the bathroom and got a towel. He put the towel under my head (which felt like it was going to explode from the lupus migraine pain)... then he trounced back into the bathroom, ran some ice cold water and came back with a cold compress for my aching forehead.
     He covered my forehead, pulled the blankets up aroundme just the way I like it, went and got a little beanbag chair, and sat himself down next to me.
     He said, "There Mommy, we can just be here nice & quiet & cozy."
     I asked God whatever it was that I did to deserve such a beautiful child... well, I am truly thankful.
     The dawn patrol house elf is always full of surprises.
     And now I am going to get back to downloading all the junk that we lost with the great computer mishap caper of 2005.
    (Please, God, may there never be another one of these!)
Loretta