M., I can relate. It is very difficult for people to understand uncommon invisible illnesses. I was diagnosed with Fibromyalgia, and chronic fatigue is a secondary part of that. My CFS makes me feel like I am dopey, unclear, sleepy, foggy, like how you feel coming out of anesthesia. But I also have alternating insomnia with it (tired but can't sleep). I have a 3 and 5 year old and can say that the last two years have been very difficult. I was lucky to have a babysitter come in 3 hours/3 days a week from 2-5 or 3-6, which is usually when I am hitting my brick wall. My 5 yr old understands that mommy has, as she puts it "problems with her bones/muscles that makes her tired sometimes and not able to move so fast". It breaks my heart not being able to be the mom I know I could be without the condition. Also, no one knows or understands my pain/struggles, as they always say "you look great!" when I say I'm doing so well. Some tips that helped me:
1) Excercise - push yourself to commit to walking a good distance at LEAST every other day. I wasn't into excercising, but my doctor stressed this, and it does make a difference. I joined the YMCA and mainly just do the treadmill for 1-2 miles (they have daycare inside). It clears my mind and makes me feel like a new person that day. I pay the next day, but go back again and feel better. Just in the last two months this started and already my "bad days" truely aren't as bad as they used to be.
2)Ask for Help - I never asked for help - always wanting to prove I could do it all and be SuperMom, only to pay every other day with extreme muscle stiffness/pain. Now, my husband knows he has to lend a hand. He helps with almost all the household chores now. He doesn't do them all, but he helps by doing a small part of a chore which helps me alot. It's easy for him to forget about my condition, because he doesn't feel it every day like me and after awhile you stop complaining, so I frequently have to remind him, without nagging.
3) Find yourself some support - a friend, a support group, or a good doctor that specializes and understands CFS. I found a good Physical Therapist who not only helps me physicall but mentally by understanding the condition. Sometimes just knowing your complaints aren't falling on deaf ears, helps!
4) Vitamins/Supplements. Make sure you are getting the vitamins/minerals your body needs. Also, not sure I would suggest this for everyone, but I try some of those diet/weight loss supplements every now and then (not daily) to give me energy when I REALLY have to push myself.
5) Elminate any other cause (leukemia, sleep apnea, Lupus, and a host of other conditions can mask as CFS). Be sure you have a good medical professional. If you find the right one he/she will rule out any/all possible medical causes before diagnosing CFS or any other illness....and he/she wouldn't say "I'm not too concerned about it". He/She will also provide you with tips on how to have a better quality of life. Try a CFS chat board and get a referral from someone in your area who shares the illness.
6) Allow your kids to be kids and still have fun. Its easy to get into a rut and allow the kids to do much of nothing when you don't feel well. Getting out of the house will help you both. Take them to a park, or someplace indoors where they can play don't try to do everything on your own. Get a babysitter to come in while you take a rest or get a few things done. Someone who is active and can give your kids the physical outlet they need, running around chasing each other. Also, be sure you find time to have one on one time, reading them books, playing a game, even when you are tired - you can do these things from the couch.
7) Print off some material for your husband to read about your condition. Here are some great sites that have some letters and articles that would be great to help him understand:
Article: You cannot see it, but you should believe it. http://www.americanchronicle.com/articles/viewArticle.asp...
List of different articles:
http://www.restministries.org/invisibleillness/articles.htm
An open Letter to those who don't understand:
http://notdoneliving.net/foothold/openletter/
I wish you well. Please know it's not something you can't beat. You can live with CFS, but you need to get to know yourself again. Understand the new you with CFS and the limitations it has put on you. Then you can plan to work around it, and listen to your body. God Bless! Feel free to email if you have any other questions or just need some advise or someone to listen.
