But You Don't Look Sick: If any of you know... - CLL Support

CLL Support

23,339 members40,047 posts

But You Don't Look Sick

BeckyLUSA profile image
6 Replies

If any of you know about this, sorry for the repeat, but I Just found the term "Spoonies" in one of my friend's Facebook posts. The term comes from having an illness that cannot be seen, that causes fatigue and affects how you live, what you can do each day ,etc. If interested, this is a good read. The author has Lupus, but much of what she said sounds a lot like what we go through with CLL. Some days I have plenty of spoons to use to get everything done and have some left over, but sometimes just getting up and dressed uses all my spoons for the day! The website is ButYouDontLookSick.com. I would have copied and pasted but it is copyrighted.

Saturday, My spouse and I are headed across the pond to the Normandy area for a week. Our last free trip since my hubby retires the end of the May. We will have to pay for any trips from here on!! Got my IVIG treatment last week so immune system is topped off . Have my Clorox wipes and masks and gloves and antibiotics ready to go. Now just have to remember to be careful of what I eat and drink, as my tummy is very prone to upset over the least little thing. Dread the flight but looking forward to seeing the French countryside on our drive from Paris to Deauville.

Hope every one has a good Monday and a great week!!

BeckyL

Written by
BeckyLUSA profile image
BeckyLUSA
To view profiles and participate in discussions please or .
Read more about...
6 Replies

Only eat things that are cooked. This means no salads, raw oysters... Even avoid peeled fruit as the knife blade will drag bacteria from the outer skin into the fruit. Bananas are okay as long as you peel it. This takes the fun out of dinning and traveling. In the base case it takes time for the gut flora to adjust. If the food on the plane is not hot (ex., slightly warm chicken), I would not eat. I have had too many colleagues get sick from airline meals on long flights - campylobacter food poisoning. Sounds like a great trip.

BeckyLUSA profile image
BeckyLUSA in reply to

Yep, I am taking peanut butter and bread and bananas, raisins, nuts etc for the plane. And I will only be endulging in cooked food!!!

Peggy4 profile image
Peggy4

A good read Becky 😀

Enjoy your holiday. Sounds lovely.

Peggy

wroxham-gb profile image
wroxham-gb

Enjoy your holiday.

Sue

JKDLED profile image
JKDLED

Thank you for reminding me of the "spoon theory" not only for myself but as an excellent example for others. There are days when I have a little energy and forget I need to conserve my "spoons" but I don't. I not only use up my daily allotment but borrow some from the next day. I am always sorry. It is very hard to make others who are not sick or constantly fatigued understand how difficult even the most mundane chores can be. I will keep the Spoon Theory in mind next time I overdo. Thank you again .

Jamie_james profile image
Jamie_james

I now use the spoons method after being told about it recently.

I told my gp that usually I would try to do as much as possible and that this would hopefully help to keep my fitness up.

My GP burst out laughing when I said this.

I have to say - rightly or wrongly I got the impression that this was a good approach by reading posts in this group.

I know everyone is different and maybe that works for some but in the interests of balance and based on my own experience I have to say that I believe the 'spoons' method works better.

I was frequently draining my energy so much that I couldn't leave the house for 2 or 3 days in a row.

Now at least I get to choose the days that I will take it easy which in the grand scheme of things suits me better.

Not what you're looking for?

You may also like...

ARE YOU A ' GOOD PATIENT '.?

Are you a good patient? As a person already reading these pages is it only a matter of time before...
Kwenda profile image

“Look up”

Awe, what a view while out on my snowshoes tonight. Made me think about the theme to look up to...
skipro profile image

The unspeakable bowel issues after chemo..... Do you ever get back to normal? From Beth, Nic, Del, and sue... And Maria

So in our very random chats with a number of friends on HU, we got talking about the issue of our...
Bethan49 profile image

LOW BLOOD PRESSURE

A somewhat new development for me has me wondering if there could be any relationship to our...
wizzard166 profile image

Road to BMT...oops just got there (Day +250)

Hello HealthUnlocked Community, I wanted to reach out to everyone and give you an update on Mark’s...
NMMP profile image

Moderation team

See all
CLLerinOz profile image
CLLerinOzAdministrator
Jm954 profile image
Jm954Administrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.