Last week was filled with CFS's characteristic ups and downs. I crashed big-time after my trip to NJ on Tuesday and spent Wednesday entirely horizontal. I was a bit better Thursday and Friday but still not well enough to manage a trip to the grocery store. I was working to put together a photo book for my mother for Mother's Day. It ended up being a HUGE project! I spent 3 days at the computer, scanning older photos, uploading photos to Snapfish, then designing the book. It was a lot of work, but it turned out great - 50 pages with 200 photos! I can't wait for the weekend - my family is coming here to visit us for a change.
Amazingly, after all that computer work, I felt really good on Saturday! Maybe it was because of all the extra energy-producing supplements I popped on Friday and the liter of Gatorade I drank, in an effort to avoid another crash. I ended up with diarrhea from the extra supplements, but I had some energy!
Craig is home sick today - looks like a bad cold. We have a busy week (though we may have to cancel some stuff if Craig is still sick), but I also need to try to rest up for the weekend. With so much to do, I'll have to keep reminding myself of that!!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I've discovered keeping hydrated really helps. What's Gatorade? Is it an orange coloured glucose drink by any chance?
ReplyDeleteI expect your Mother will love her book, something to keep and cherish.
What is it Renee says? Rest, Restore, Recuperate? Have a great week.
Thanks, Jo!
ReplyDeleteGatorade is a sports drink - yes, it has sugar (though I was drinking the low-sugar. type), but the important thing for those of us with CFS is that it has lots of sodium in it. My boys have to drink a liter or two every day, and it really helps to control their OI and the rest of their CFS symptoms. I usually go for V-8 juice (also lots of sodium but fewer calories).
With all the Gatorade we buy every week, we should own the company by now!
Sue
Now, I'm curious -- is it the sodium that is important, or electrolytes in general?
ReplyDeleteAnd what would I do without your ever-flowing fountain of information! :)
Glad to be of help, Shelli!
ReplyDeleteIt's SODIUM that's important - LOTS and LOTS of salt.
CFS causes a condition known as Orthostatic Intolerance (OI) - studies show more than 90% of people with CFS have OI. Its characterized by lower-than-normal blood volume which results in difficulty maintaining a normal blood pressure when upright.
So, if the doctor takes your BP in the office, it might seem normal, but if you lie down for awhile, then stand up and stand still for 10 minutes, the doctor would see your BP suddenly plummet and/or your pulse go way up.
In practical terms, this means we feel sicker when we're upright for too long (either standing or even just sitting up). This is why a nap or rest lying down helps so much.
OI is actually behind a lot of our worst CFS symptoms, and the best way to combat it is to ingest HUGE amounts of salt and fluids. It's not too great for our figures, but we need to try to intentionally bloat in order to increase our blood volume and maintain a steady blood pressure. There are also medications and supplements that help.
Try it. Next time you're starting to feel run-down or have been on your feet too much, drink a big glass of V-8 juice or Gatorade. It really helps.
Maybe I should write a post about OI, huh?
Hope that helps -
Sue
cont'd. -If I have a crash I take 2 extra strength eg.pamprin,midol and lay(i.e.rest) with heating pad. I need all 3 for miracle relief. Also will take 2 nite before important event-very effective. I am assuming all familiar with effects,eg.contains Tylenol,therefore risks,eg kidneys,rebound,
ReplyDeleteetc. If interested I would elaborate. A note;In France CFS was referred to as spasmophlia. Joan