She seems to think I am super women and I can get all housework done and errands in my condition. I just feel like laying down because of the pain and fatigue.How do i get my spouse to understand about my Fibromyalgia and Chronic Fatigue syndrome?
soem fibromyalgia association is promoting teh clothespin test-have the well partner put clothespins on her fingers and see how tehy tolerate it-
Think the pregnancy simulators that they have for teh non pregnant partner to teach tehmhow it feels-
could do something liek have your partner wear restrictive clothing-weights on arms and legs-set the alarm to go off at midnight-just keep hitting the snooze to bewoken up agian 9 minutes later-get up after only 3 hours of sleep for a week to simulate the fatigue.....How do i get my spouse to understand about my Fibromyalgia and Chronic Fatigue syndrome?
Tell them to be more considerate. Say you need someone who supposrts you. If they can't support you, lose them!
Check out http://www.fibromyalgiasource.com for lots of information about Fibromyalgia including my experience living with it.
Visit my site http://www.fms-help.com - look in the yellow box on the left for many supportive articles and things to share with family, friends, etc. who don't understand FMS/CFIDS.
I have this book: http://www.amazon.co.uk/Fibromyalgia-Dum鈥?/a> and there's a lovely section in it on helping your friends and family understand what you're going through. Unfortunately, due to the fibro fog, I can't for the life of me remember what it said. I'll be back when I can't remember where I put the blasted book.
Ten mins later...
Okay, I have the book, but there's a whole lot more of it than I remember. Basically it boils down to needing communication to go both ways. That if you listen to her problems when you're able to she'll be less likely to be feeling the frustration and things that cause her to expect more of you.
It also says that if you start politely saying no to people, you'll find that they will accept it far more than you'd expect. Do you do it because she asks you to, because you expect you to, or because she seems to expect you to? And that brings us back to the communication above.
Have you taken her to any Dr's appointments or clinic sessions, or groups or anything? She might not be fully understanding exactly what you're going through. Studies (conducted by people without fibromyalgia but know how real it is) have established that it's like the aches and pains you get with the flu... but ten times the strength.
And finally, do you let her know what you're going through, or do you try to cover it up? If she comes in and asks how you are and you're made up, dressed in nice clothes, smiling and saying you're fine, then she's going to assume that's how you're actually feeling. If you're on the sofa in your jammies, sipping a cup of tea and you tell her you feel like poop she'll get a better idea of what you're going through.
I like to be happy and smily for my chap too, it's only natural. But if you feel like poop, don't be afraid to admit it. When people understand what you're actually going through they don't expect so much of you.
If there's any more help or support I can offer, please feel free to email. I'm in quite a good place with the world's most supportive partner, but I still ache and almost fall asleep on people and spend large amounts of my day cursing my body. Anything I can do to help a fellow sufferer is fine.
Take care xx
This is one of the topics that those of us with FM and other chronic issues struggle with. Check out The Spoon Theory. It was actually written by someone with Lupus, but easily explains other chronic issues as well. It really helped my spouse! Wishing you the best!
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
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