Tuesday, October 11, 2005

My Pea Soup World

Today, I am going to borrow a theme of discussion, from my friend, Loretta, at Life with Lupus.

Chronic Fatigue as it presents in Lupus or Rheumatoid Arthritis.

This kind of fatigue happens because our internal immune system is in a constant hyper-drive, fighting our bodies own tissues or organs.  That is why we, those of us with these diseases, take immuno-suppressive drugs.  To stop our immune system from attacking our good body parts and causing damage.

Yes, sometimes the drugs cause fatigue, too.  I know, it just isn't right, is it?

The thing about this Chronic Fatigue is that people think you are just "tired".  Or worse, maybe they think you are lazy, or unmotivated in your life to do for yourself and do more.

Believe me, that is NOT the case.

The way I describe the fatigue to people who are not sick, is to imagine that everyone who is "well" moves through a world made of clear broth.  Simple enough.

Now, imagine those of us who are sick moving through a world of thick, gooey, pea soup.  You have to fight to move your muscles with 2 or 3 times the effort of the "well" person.  You cannot see clearly, think clearly or move easily.  There are obstacles (chunks) in your way.  Your choices are limited, everything you do must be considered and weighed as a decision, because the wrong one, and maybe you will fall out of the cup.  You can't tell where the edge is because it's thick pea soup.

It is hard, and it is debilitating.  Especially, when no one understands.  All they see is someone who looks "well enough" parking in handicapped, or not exercising, not cleaning, not cooking,  or not working.  The perception is you are lazy.

Actually, there are some who do understand.  Unfortunately, they are usually in the same bowl as we are. 

Sometimes, "well" people do get it, and we are so grateful for those few in our lives.

Today, I was lucky!  I woke up in clear broth!  I was thrilled because today was my "fall cleaning" day.  I got my storage bins and my garbage bags and I was raring to go. 

I would have been happy just to get Pumpkin Muffin's closet done.  It was a disaster area awaiting a Hazardous Materials clean-up crew.  I conquered it, sorted it, eliminated and re-organized it!  YAY!

But, that is not all!  I had energy left!  So, I tackled the school book area, two baskets filled with stuff in my living room, and some of the play room.

I was a tornado of efficiency!

Alright, I needed to lay down afterward, and took an hour and a half nap, but I spent 4 hours working straight!  That just does not happen around here!

After my nap, I got showered and dressed and greeted the kids to do homework at 3pm and still felt good!  My husband, who walked in at 3:30pm, knew what I had done, and was very worried that I did too much.  He was pleasantly surprised when he came home that I looked, rested and happy! 

I have to say I am surprised, too. 

Here is another difference from the "well people".  I know that this will not last.  I am happy and grateful for each day like it, and if I can string a few together in a month, wow, I am really thrilled and feel really blessed. 

It is days like today that I almost feel... um,  <looking around> normal!  I fear that speaking it aloud will break the magic spell and the pea soup will fall back down on me in an instant.

So far though, so good.  I don't know what tomorrow will bring.  That is the unpredictability factor of these diseases. 

And, that is the one symptom no one lists for Lupus or RA, but all of us learn to cope with pretty quick.

Be well,
Dawn

 

 

                                          

18 comments:

sdoscher458 said...

Oh Dawn I wish you many good days. Sandi

gdireneoe said...

Hey Dawn? ;)  Quitchyer pea soup snivelin'!  LOL  Smooches ;)  C.  http://journals.aol.com/gdireneoe/thedailies

lv2trnscrb said...

Dawn, thanks for educating us about your days, and the days of people with chronic fatigue, so that we can know what you have to deal with. I wish you many clear broth days.

betty

jckfrstross said...

Hoping for clear broth days:)

Deb

lurkynat said...

Dear Dawn,
very illuminating! Indeed it sounds extremely frustrating
lot sof love and good energy wished for u
:):)
hugs,nat

hadonfield78 said...

Thank youmy dear, that was a beautifully, well written entry.
I dont get around as good as I used to, couple that with my emphazema and somedays, tying my shoes is an acomplishment.
I get tired and drained and short of breath.
I wish my wife would understand.......................................
I really get tired of hearing how lazy I am cause I need to take naps...........

eml625 said...

Dawn,  I am so happy you had clear broth day ! Thanks for explaining this in terms that we can understand.  

Ellen

sangrialel said...

I love the way you describe all this in terms that everyone can understand!  Clear broth day!  That is a great one.  I am glad that you got so much done!  I hope today is a clear broth day as well.  Lelly

sbrlzc said...

You wanna share some of that clear broth with the rest of us? Ok, selfishly, just with me? I need some today. It seems like the more I have to get done, the more tired I am.

Ah, lupus....

Hugs,
Susan

klconard1 said...

Oh this describes it all right dear!  Life with chronic fatigue is not pretty.
loving you
karyl

tillysweetchops said...

I had a friend who had ME which is rather like Chronic Fatigue Syndrome - it came arrived after a bout of glandular fever and practically drained the life out of my previously vibrant friend. The good news is that 3 years later she's out of it. As I understand it, many aren't that fortunate.
Tilly x
http://journals.aol.co.uk/tillysweetchops/Adventuresofadesperatelyfathouse/

iscribble4u said...

I hope your well written entry educates the public. Invisible disabilities are hard to understand for those who have not walked a mile in its moccasins. Take care.

bosoxblue6993w said...

one of the baleful symptoms of my MS is a sudden and uncontrollabe fatigue.     i am often tabbed - even by friends - as being lazy

gypsytrader49 said...

Truly Enlightening! I need to send this entry to some of my friends and family who don't quite "get it". Especially when "You Look SO Good!" comes out. I know people are well meaning but it hurts because you always feel like you should be doing more, bucking up, be a positive thinker  and blah-blah-blah. Pea soup seems to have surrounded me alot lately which is why I haven't been journaling too much recently.
ThankYou
Kathy

foxygreeneyedldy said...

That is exactly what its like!  Sometimes I feel trapped in Jell-o, rather than pea soup.  At least the pea soup you can move around in.  Jell-o days are spent locked floating in space.. :-(

Really, really, really, really, really, really glad to hear that you had a day of clear broth!  Many "spoons" to you!

Lady Fox
http://journals.aol.com/FoxyGreenEyedLdy/FoxysRAJournal

sazzylilsmartazz said...

I'm glad to hear you had a good day too, Dawn. I'm also glad you are providing information to assist others in understanding. I feel most people are good at heart; sometimes they just misunderstand because of lack of education or information. I've learned more about lupus from reading your entries than I could from reading a medical book. Med books are too clinical. So, thank you for all the valuable information you are providing and keep it up. I hope you have moocho more great days.
Dianna

thebaabee said...

Dawn,
Thank you.  I am  very lucky because my hubby and kids  are  very understanding  with regard to my fatigue.  I  can rest without  the "comments" that some  of  my other Lupie friends endure.

I love the pea soup comparison.  You are always right  on target.  Hugs,Lu
http://journals.aol.com/thebaabee/LUANNESLIFELIVINGWITHLUPUS

ckays1967 said...

It is days like today that I almost feel... um,  <looking around> normal!  I fear that speaking it aloud will break the magic spell and the pea soup will fall back down on me in an instant.

oh yes!!!!!


More broth please....