I was floundering trying to figure out how to live some kind of a life with FM. I had spent most of my time in bed, and basically had no life.
One day while on the Internet, I came across a group called CFIDS & Fibromyalgia Self-Help.
This was truly an example of being led to help by God. I never was much of a surfer on the Internet. I was too sick. But I know God led me to these people.
They teach small, on-line classes showing how to live a life with FM, CFS, etc.
They teach a concept of pacing yourself. By pacing, I learned that I don’t go out and overdo and then crash for several weeks. I learned to use what they refer to as an “energy envelope.” Each day, I get up and decide, as best I can, how much energy I have in my envelope. I then can figure out how much I energy I can spend on what I want to do that day.
If I’m able to be up and around, then I pace during the time I’m up out of bed. I take lots of rests. I do things in small bits of time. Do something for 20 or 30 minutes, then rest. If I recover, then do another 20 or 30 minutes. By taking rests, I have found that I’m able to extend the amount of time I can stay out of the house.
I’ve also learned that I have limits. Usually, I can easily do two hours out of the house. But four hours is my absolute limit.
By pacing and resting, I have managed to put together a bit of a life. I am so grateful for this group.
FM is so hard to live with. No one really understands how sick I am. Sometimes, not even my husband seems to understand. (But, he is incredibly supportive most of the time.) But the group of people I met in this class and now in the alumni group (which is free), I have met a wonderful, supportive and informative group of people who really know what I experience.
If you are feeling stuck and like your life is out of control, you may want to check this group out. They also have a wonderful library of resources.
Click here to find them.
Thank you for this. They seem to have a comprehensive, yet straightforward approach. I have almost every symptom on their long list but the most disabling in the last decade has been the sleep problems.
I will definitely be following up although even the concept of a management plan is a bit overwhemling at the moment.
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I was in severe brain fog when I took the class. They keep everything very simple and straightforward because they understand the brain fog. One can do as much or as little as you can. The greatest part is the alumni group afterwards, which is free. There is a topic each month and one can also discuss anything else. I’ve met some great people with FM through this group. Merry Christmas.
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I know that group, Kerry, and while I haven’t been a part of it long, I thought it was very helpful also. The have such simple concepts that help me manage this horrific illness.
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That’s so awesome! 🙂 Are the online classes free?
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They are $25. They have scholarships. They are so worth the money. I only took one of the classes, I think. Maybe I did the second, but not the third. I highly recommend them. The guy who runs the site is a doctor with CFS, who now climbs mountains due to pacing.
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Maybe I could sign up for a scholarship then. 🙂
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Absolutely. There is a link to the site in my blog. I can’t tell you what a huge difference this group has made for me. Or maybe you could ask for it for Christmas? Let me know if you take the class.
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I’ll be sure to! 🙂
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Hi Kerry, I just signed up for the scholarship! Hopefully, I’ll be getting a little extra money soon so then I can sign up for the class. It sounds great! 🙂
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Oh, Jenn, I’m so excited for you. I hope you get the scholarship. This class helped me so much.
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Give me your name, and I’ll drop a line to the guy that runs the group, and put in a good word for you. I don’t know your last name. I doubt that Jumping Jenny 44, would do much good.
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Yeah, I don’t think my username will be useful for that either, lol! My full name is Jennifer Mulherin. I really appreciate that you’ll put in a good word for me! ❤ thank you so much!
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Done. Don’t know if it will help or not.
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It might. Thank you so much! 🙂
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Great link, thanks! Pacing and learning to listen to your body really is the key to living successfully with chronic pain.
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you are right no one understands fibromyalgia or cfids…no one did except dr cheney and chiropractors in 1983.at least now most drs. understand , but no one understands toxic molds..i remember all the years people didn’t understand….now i find out,lyme since i was 7 & i don’t understand & i don’t want to…..
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