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CLL Support Association
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But You Don't Look Sick

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!!


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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.


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!!!

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A good read Becky πŸ˜€

Enjoy your holiday. Sounds lovely.


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Enjoy your holiday.


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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 .


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.


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