(I just love that song from the movie Madagascar!)
I'm feeling better and getting caught up after my week-long crash. Just some mild congestion left, but my energy is back. I even went skiing today! Now don't get too excited. By "skiing", I mean that I wiped the cobwebs off my cross-country skiis and boots, strapped them on, and took a few laps around my house in the quarter-inch of snow left from yesterday. I can't imagine what my neighbors must think!
Those 10 minutes of skiing left me out of breath (though happy!) and worrying that I might have done too much. How crazy is that?
Before you knew about CFS, would you ever have believed there was an illness that made exercise BAD for you? I wouldn't have. It's just surreal sometimes, isn't it? We're surrounded with advice and admonitions - from TV, magazines, the internet - that we have to exercise more in order to be healthy. Not a day goes by that I don't read or hear of another benefit of exercise. It just seems insane to me that something that is so good for the rest of the population can make me so sick. My mom was telling me this weekend that one of the reasons she loves her Jazzercize class is because being with other people motivates her to work harder and helps to get her heart rate higher. I said, "That's exactly why I can't go to a class!" We laughed, but it's absurd, isn't it?
For me, the exercise intolerance is at the heart of CFS. It is the single aspect of this complex illness that affects my life more than any other (I'm very fortunate to experience almost no cognitive dysfunction). Before I had CFS, I was very active and LOVED to exercise - hiking, biking, aerobics classes, dancing, weight training...I loved it all! I loved the feeling of moving my body, breathing deeply, feeling alive. I miss that so much. When I daydream of being well again, that's what I think about - all the active things I want to do.
I'm grateful that, on a good day, I can take a slow walk or do 30 minutes of gentle yoga, but I yearn to move without limits again. The toughest part is that the response to exercise is delayed. I could do much more - and enjoy it! - but then I'd be flat on my back for a day or two (or more). It is so hard to hold myself back on days when I feel good.
I just keep hoping that some CFS researcher is going to discover the secret behind exercise intolerance and how to treat it. Maybe? Someday?
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.
11 comments:
Oh my gosh, I'm so glad that you mentioned that you haven't dealt with the cognitive issues. My Jessie hasn't either, in fact, she's still acing school with a homebound tutor. It was making me wonder if she had something else. Otherwise, she's a textbook CFS case.
I got her appointment moved up (with Dr. Lapp at Hunter Hopkins Ctr) because she's dealing with some terrible migraines and the doctor here doesn't quite know what to do. We're going next Tuesday.
I'm glad that you are feeling better. It's bad enough dealing with CFS, but to add something else on top of that - BLAH! I'm sure you're happy to be up and around again.
Have a great evening!
I understand exactly what you mean. Today, I'm dying to run. I miss the exhilaration of exercise so much. Since morning I've been wondering whether I could risk going for my yoga class today, but I've finally accepted that it would put me back in bed for the next 2 days.
I, too, love exercise! After abandoning it completely, I find I can add bits and pieces, according to how I'm feeling at the time. I love my belly dancing, because the program I watch is broken into 5 minute segments and only lasts a total of about 15 minutes. So doable! And I feel so good afterwards.
I'm so glad you had a couple of laps around the house! It sounds like fun. I certainly hope there are no repercussions. Good to have you back after the crash, though!
It's so strange, I had just finished writing abt how much I miss exercise. Then I saw your blog abt exactly the same topic. could it be in the air?
Sounds like everyone's in the mood to move! I seem to have managed my 10 minutes of skiing without any repercussions - woohoo!
As for cognitive dysfunction, I sometimes feel a little brain fog if I'm very severely crashed, and I've noticed mild trouble with word-finding (there's a word for that, but I can't think of it!), but otherwise, I'm grateful I can still read and make my living (such as it is) through writing - as long as I have my thesaurus handy!
Sue
I haven't experienced much cognitive dysfunction either. Most days I am fairly clear, but I do notice that I am beginning to use incorrect words sometimes...using one word when I mean to say something else. And, of course, when the fatigue is rly bad, I do feel confused and 'foggy', but I think that's only to be expected.
Your title gave me a smile :)
Can I link this post on my blog? You say it so well and I'd enjoy sharing this with the handful of friends and relatives that visit my blog.
P.S. I love that you cross country skied around your house for a few minutes. Yay!
Hi, Sherry -
Glad you enjoyed my post. You're always welcome to link to my blog!
Sue
Oh, interesting. I wasn't a great exerciser but do miss riding my bike, swimming and, most of all, long long walks.
I do get the cognitive stuff but it switches on and off. In fact it was the cognitive stuff more than the fatigue which meant I couldn't work any more. And that came on in the space of just one day.
Glad last weekend's illness seems to be dissapating. Cheers, Jo.
Thanks, Sue! My post is up.
The fact that exercise is bad is a new concept for me -- I just love how you put it out there in the open. I just made this discovery last week after some exercise stress tests ... never would have guessed and am still trying to adjust my thinking! As an exercise physiology major and former athlete, we tend to think we can 'train' through it. WRONG!
Post a Comment