Quick ?... need advice

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Cookie's Wife
Regular Member


Date Joined Aug 2005
Total Posts : 299
   Posted 7/15/2008 5:12 AM (GMT -7)   
Does what seems like a simple cold totally wipe you out?  How do you explain this to your family and friends who tell you to "suck it up, it's JUST a cold".  HELP!!
~april
 

 



Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 7/15/2008 6:03 AM (GMT -7)   
Yes and I tell them that its just a cold to you not me. Most of the meds we take plus the DD itself knock us down to the point, we dont heal well.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 7/15/2008 6:51 AM (GMT -7)   
You know we live with the symptoms of crohn's disease for so long, it becomes our normal. Sometimes it really helps to step back from what our normal is and try and relate it to our pre-crohn's lives. No wonder people can't understand unless you can give them a reference point.

When I try to explain it I ask if the person questioning me has ever experienced a gastrointesinal bug "stomach flu". I Ask them to describe how they felt -- you know, like when you're trying to decide which end to face the toilet bowl -- bum to catch the poop or head to catch the vomit. I ask them to remember how it felt to try and take care of the kids, work, prepare a meal, etc. By then they are, like are you crazy. You can't do those things when you have the flu. You just basically stay in bed until you run to the bathroom. But we often do have to function in spite of those symptoms.

Once they start getting that picture. Then I ask what they felt like the first day after the "stomach flu". Were they full of energy? Or did they just sort of drag around. Then I explain that the way they feel while recovering is how i feel on my best days and that I have many days with crohn's that are as bad as having the stomach flu.

No one yet has failed to understand when I put it in those terms.
Belleenstein:

30+ years living with Crohn's.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 7/15/2008 2:01 PM (GMT -7)   

April, I think all of us have this problem. I have given the spoon theory to my hubby and some friends which has helped (written by someone with lupus). She describes what a day is like with her disease very well.  

link to the article:

http://butyoudontlooksick.com/the_spoon_theory/

Unfortunately, some never truly understand what it feels like to be totally wiped out and almost never feel rested and energetic.

Karen

 


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort Switching to Humira June 2008 will wean off Pentasa and Entocort

Diagnosed w/  Fibromyalgia May 2007 also on Soma - Also on Prilosec for reflux.

 

 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/15/2008 4:33 PM (GMT -7)   
That's good advice, Bell. Thanks.
Co-Moderator Crohn's Forum.


Cookie's Wife
Regular Member


Date Joined Aug 2005
Total Posts : 299
   Posted 7/15/2008 8:24 PM (GMT -7)   

Thank you all for your responses and GREAT advice.  I guess you will always have someone not "get it".  I just wish it wasn't family and friends.

I had the spoon theory hung up at work.  When someone gave me the... Why are you being lazy look... I made them read it. I love that story, it even helped me put this DD in perspective.

I think my family understands the actual Crohn's part of being sick but it's feeling ok Crohn's wise and getting a cold or other infection and feeling exhausted... not tired... but EXHAUSTED!

I love this site!  It's always lets me know I'm not alone!  You guys are GREAT!  tongue    


~april
 

 


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