Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Don't laugh, but I am soothed and my brain gets a break when I color. Just like kids I have crayola crayons and a coloring book.
You can download Skype and chat with friends or family for free.
I've had CFS for 14+ years. There are times when nothing appeals to me. Except things I can't do. Take my dogs for a walk. Clean the house. It's a hellish disease.
GO STEELERS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Crosswords are good for you too! Talking to someone from your family, or church or Skyping with them if you are fortunate enough to have a computer. Skype has added a wonderful dimension to my life, as I can now actually SEE my grandkids instead of just talking on the phone. I feel less disconnected from them this way.
I cut coupons, read the paper ( for limited amounts of time during bad briain fog days), play online games. I make small project goals for myself around the house, when I complete them, I feel good about me!!
That's the key. We need to do stuff that makes us feel useful. When we water the plants AND put lunch together, that's an accomplishment!! We need to pat ourselves on the back a little more.
Being alone, is very difficult. If you are alone, I am so sorry. But in any way I can, I try to socialize. Even if it's just with one person, on the telephone...it's avoiding isolation, which is just not healthy.
I have friends. I have to reach out to get to them sometimes, but I don't mind. We have to fight a lot for help with this illness. I'm surprised at how happy people are to hear from me, if I will reach out to them first.
Take a step, small one, but take one. Do something for someone else. Make THEIR day. You'll feel better about yours!!
Hang in there Amy! We're all in this together!
While I can't due most hobbies due to pain, stiffness, and fatigue, I've found free lectures on line and can view them at any time. I love crossword puzzles too.
I know this isn't a "hobby" for most, but it for me it helps... Bell soft tech resistance band with handles. I do just a few repetitions (whatever my body will allow 2 or 10) here and there throughout the day (not every day).
Also, I couldn't sit or hold books to read so I found a great book holder that enables me to lie in bed to read.
If you can walk a block or two, then walk that block or two as often as you possibly can. I love to read. I write. There are things I've had to give up but I do what I can when I can. There are some good suggestions here. For me it is more about restlessness than boredom because there is always something to do, I either don't "feel" like doing or am not able to, but the something is there.
I think a lot of it comes down to chopping things up into manageable tasks. Whether it's a trip to the store, cleaning, cooking, laundry, crafts, computer stuff, gardening, family history, organizing family photos, making music (even if you are unable to play for long periods - composing in your mind?), writing poetry, photography, etc. we do what we can a little bit at a time.
Take care,
katy
For me, my big passion is photography, and my style has a lot of post processing work involved, so I often spend whole afternoons editing quietly in bed.
Good luck! I hope you find something you really end up loving.
I do need to download skype so I can visit with the grandkids until I move closer to them. I live with my boyfriend and visit our friends and his family now and then. I just miss having a purpose in life I guess. It feels so selfish to not work or volunteer.
I like the idea of cutting coupons, someone at our apartment complex does that for military families overseas. I used those when I was in the military, they come in handy because at some locations the only have the name brands and no store brands. Coupons make a huge difference to when the local exchange rate suddenly makes your monthly off base rent take a huge bite our of your budget.
Thanks for all the tips, I need to find where I put those crayons now!
A way I cope with all of my limitations is to "trick myself" into making boring or routine activities into projects or goals. For instance, if I can only watch movies, I try to watch them in a specific group. For instance, I'll watch several James Cagney movies in a row, and then do a little online research about him and about the studio he worked with. That way I"m not just passively watching movies, but also reaching a goal and learning something also. Then I can also spend some time thinking or writing about his films, or learn more about the era in which the gangster films were made, without exerting too much effort. Netflix offers a lot of old movies for a pretty reasonable price.
Also, audiobooks are a great way to "read" without working too hard. Some public libraries are starting to offer audiobooks for rent. Audible.com also has a subscription service. Again, I try to create a goal based on author or theme so it's a little more
"active."