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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Tuesday, January 22, 2013

4 Fibromyalgia & CFIDS/CFS/ME Tips

Try to spend time with those you really love!

Today I bring you four commonsense CFIDS/ME/CFS and fibromyalgia tips some of which are actually helpful for all people, not just sick ones.  

This comes to you by way of my rheumy.  

  • Blame your doctor: I love this because it's one of the best things you can do for yourself when you feel as if it's all too much.  That's why you're paying your doctors: to get help of all sorts, from physical to mental and spiritual, I dare say.  And if your doctor is worth his salt, so to speak, he WILL have told you these tips. Furthermore, you simply tell yourself that you not only have permission to do the following, but you have been ORDERED to do the following:
  • Don't overdo it when you feel great/good.  Let's face it.  Most of those ill with the DD were over-achievers in their previous life and so it goes against every part of our being NOT to do all we can on a "good" day.  It makes us feel great when we accomplish anything.  We're "doing-it-all junkies" is another way to put it.  We also feel guilty when we don't accomplish those things which we think are on the top of our endless lists. So, keep in mind that on a good day, don't overdo it.  And yes, I realize that I'm very bad in this department.  
  • Don't starve yourself when trying to lose weight; nutrition is so important.  I think my rheumy gets most upset about this one because his patients are overwhelmingly women.  And what do women always try to do?  Lose weight.  This is especially true because we are often on medications which make us gain weight, be it because we're always so hungry or because the medicine messes up our metabolism.  But he sees women doing great harm to themselves because of the weight issue.  So, try to take off weight carefully and in a smart fashion.  Once the vitamins and nutrients in your body are depleted, all sort of problems enter the picture.  Furthermore, those deficiencies often take years to truly recover from.  B-12 deficiency, for example, takes two years for full recovery.  The numbers on tests may become normal relatively quickly, but that doesn't reflect what is happening to the actual cells.  Here is where you need to be patient.
  • Avoid toxic people.  We have enough problems in our lives and we have enough conflict about our illness even being real to begin with.  Do we really want to add toxic people to the equation?  Your time and energy are already limited.  Do you really want to waste precious health credits you've accumulated on people who poison you with their attitudes and passive/aggressive ways?  You know who they are.  Cutting them out of our lives will lessen the stress load.  Now I don't think you should say, "get the heck away from me you windbag, you blowhard."  Simply be conveniently too busy with things that really need to get done and spend your precious time with the people who bring you up instead of bringing you down.  
So, there you go.  Right from my rheumy's (and GP's) mouth.  Very obvious truths, but oh so hard to live them, I know. 

With that I say, I hope everyone's doing their very best, only better.  Ciao and paka! 

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  1. Thank gawd I got over what I thought of other people's opinions years and years ago! Friends and loved ones' opinions matter, but what they think of my weight doesn't define me.

    Yup, since being dx'd with Fibro in 2010, I gained back the 60lbs I had just lost, and then some. Thanks to the inactivity and nasty weight gaining medication. But weight loss isn't my focus right now. Sure, it's important, but I feel there are more important issues for me.

    Finding a new doctor obviously, but I still have a very hard time pacing myself. My hubby mumbles and whines when he thinks I should be able to do something but am refusing simply to be a bitch. Really it's because my pain at that moment in time is pretty darn high. That by doing the mediocre minor household chore he wants help with, I'm going to be on my back in bed for the rest of the day. No, not for happy, bouncy go lucky kind of reasons! Painsomnia kind of reasons.

    Sometimes the hubby is the Negative Nancy I want to avoid lol! Unlike him though, I don't blame the poor cats for everything from his passing wind to scarfing the last of the chocolate ice cream >.<

    Blaming Big Pharma in a generic (pun intended) kind of way is my current kind of hating on someone. Until I get a new doc I guess hehe

    1. Yes, your true friends, as well as family members, don't care about your weight. They only want to see you better! Thanks for writing in, Shannon. Here's to you having a good weekend - and finding a pace that's good for you. xx

  2. Hey

    I have FM and just found this article, think you might find it interessting.
    I have printed it out to take to my doctor.
    I thought I post it to you when you have been sick so long and even though I have only lost 5 years of my life, it feels like a long ride.