On Sunday night, after I'd spent the weekend resting, my husband said:
"You know what most people don't get about CFIDS? That the hardest part is not doing all the stuff that you really want to do because you know it'll make you feel worse later. That requires real strength."
He's right. In our society, strength is seen as pushing on through adversity, continuing to move and do and strive no matter how you feel. In CFIDS, that's counter-productive; the harder you push, the sicker you get. But many people see this kind of proactive rest as weak or lazy. This is one of the hardest and most misunderstood aspects of CFIDS.
And aren't I lucky to have such an understanding husband who truly gets it? Yeah, I am.
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.
So very true. It is TORTURE to stop myself from doing things. Pure torture. Did you know that Laura Hillenbrand could not attend her own wedding reception? I just found that out and it breaks my heart.
ReplyDeleteHi Sue,
ReplyDeleteI hope it is okay that I posted a quote from this and linked to the rest of the post on my own blog today. Both you and your husband "nailed" it.
I've got a very understanding husband too - he's been heard threatening to duct tape me to the couch many a time!
ReplyDeleteFor the most part I don't care what other people think - but I'm a do-er by nature, and lying still watching paint dry doesn't come easy to me!!
Yes, me, too - about being a doer by nature and about my husband threatening to tie me to the couch! In fact, We had that talk last night, when I was obviously crashing but kept running around the house doing stuff.
ReplyDeleteSue
I agree - so sad about Laura Hillenbrand.
Sue: You are very lucky to have found somebody who understands it so well - I just tried to understand it myself in a long rambling post, and don't think I accomplished much, except confusing myself further. Oh well, what I wanted to say was that I'm glad you have the support of someone who really realizes that aspect of CFIDS is definitely devastating.
ReplyDeleteYes, CFIDS requires a type of discipline few understand -- the discipline to NOT do things.
ReplyDeleteLike all of you, there are many things I miss doing -- especially exercising. I was an athlete prior and disciplined because of that. Now I have to use that discipline in a different way.