
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...
The biggest thing for me lately, is taking breaks even when I feel like I could keep going, mentally or physically. Endorphin and adrenaline output during exertion can be MISLEADING.
On the days I don't have either?
I see squirrels and eat CAKE... (Sorry 4sons...)
If I can get up and about I try to get out once a day. I can't do it alone, I need Bobby to drive me. If my brain fog is really bad, I don't even consider it.
I do a "housy" thing every day. I cook dinner, no matter what. I do it in the morning when I can still think and before I get too tired. The rest of my day is always up in the air. I do watch tv in the afternoon, or read, or do a crossword to keep my brain motivated, but mostly I do whatever is right in front of me that I'm up to doing. Writing bills, throwing out garbage, calling a few friends, typing here on DS.
Point is though, no guilt if I'm not up to doing anything more than laying on the couch. Don't feel badly about that. It's the nature of the beast.
You're a good one you are Ruth, don't beat yourself up because the ole body won't do it for ya anymore.
God bless, love, Darla
The list is everything I need or want to do. Maybe I listed a project. Once begun, it's only listed as small steps instead of a big thing I can't think about. Each day or two I look at it, put a star by the most important stuff and do what I can, if anything. There are many days when nothing gets crossed off, but I flip to a new page and rewrite the list anyway. The repetition helps me memorize what I need to be paying attention to, and priorities may have changed.
This is not foolproof, and it can still be very frustrating! You get a run of days when you can't do any of the items, the list starts to pile up, paranoia sets in, etc. People start demanding actions from you. So you tend to freak out a little. I TRY to be very disciplined about not expecting too much from myself, and I'll sure as heck play that disability card when I really need to - that's what it's there for.
If, as everyone else is saying, even ONE thing gets done, then that is progress. I congratulate me on a hard job well done.
Once in a while, I can do several items.
If I can't actually do any of them, I spend the time trying to plot the easiest way to do the mostest with the leastest.
If I can't even do that much, I'm hanging out, waiting for an opportunity to arise.
The only problem with trying to do ONE thing every day, is that I have never yet managed to get daily life down to just ONE thing. All that does is reduce the pileup just a little - but that's still good, so I try it anyway. Usually there are several items per day, at a minimum. That's where mostest with the leastest comes in. Somehow or other, I keep surviving it. Every once in a while I notice I actually accomplished something because it's not on the list any more.
New addition to an old 12 Step saying:
"One day at a time when you can, five minutes at a time when you have to" - and whenever a minute arrives if there aren't any in sight right now.
I do get the thing about knitting - there's something calming about kind of mindless repetitive things. Keeps your motor running, takes just enough attention to block out extraneous stuff that would drive you nuts otherwise. Consider what it is you are most needing to block out - lights, sounds, colors, new information? Out of habit, we nearly forget we OWN all that stuff. You can shade it, flip the switch, paint it black, throw it at the next person who dares to ring your doorbell ; ) - whatever you need to do. And that includes telephones! Turn that thing off. You get to! Each of these things eats attention in one way or another. If your space isn't 100% comfortable for YOU, then it ain't right yet. Consider turning off EVERYTHING - even the refrigerator. Then turn things back on very slowly, one at a time, until you find out what's breaching your tolerance level. You might still want to knit - which is fine. But at least you won't be knitting defensively.
Hugs, Progress, and Brain Peace!
http://www.cfidsselfhelp.org/
It deals with this subject, rest and living within one's energy envelope rather than burning and crashing (something I have a hard time not doing!) Ultimately the main writer in this web site got better doing this.
Cheers,
Lisa
Our alarm goes off at 7 am the boys get up and get dressed.
I give myself 15 more mins before I get out of bed because, I feel more balanced and less stiff if I wait. I make the bed.
I always make my bed. no matter what, if I can't do anything eles all day I will still make my bed. When it's the end of the day and my bed is made as I pull back the covers I can know that I did SOMETHING that day, and tomorrow I can do it again.
I meet the boys in the kitchen and help them with breakfast and making lunches. I take my thyroid then because I can't eat for a half hr. after I take it. Then I get dress and the boys finish getting ready for school. I take them and I'm back by 8:30.
I feed the dogs and the bunny.
I turn on the washer, the clothes are already in there ready to go. I get breakfast, take my meds. and go on my computer.
When the clothes are done washing I put them in the dryer, and put the next load in for tomorrow. I do one load a day.
Then I take a nap. The washer buzzer goes off and depending on how tired I am I either go take the clothes out, fold them and put them away. Or I sleep longer and wake up when I can to do the clothes.
Then I make me something simple, for lunch and go back on the computer until 1:00. Unless I slept too long.
At 1 I make sure the dishwasher is take care of, and the counters are clean. If I have the energy I sweep the kitchen, laundry room and gameroom (that's where the dogs hang out). If I don't have the energy and the and the floor really needs it I make it a chore for son #2. Son #1 does garbage. We can't drink our water so we have a lot of recycle that I take out at this time.
At 2:30 I pick up the boys. We have a snack and we just sit around for about 30mins then they do their chores and homework, while I clean the room I'm working on for that week. I do something different in that one room each day of that week. I work on a different room the next week. I stop at about 4:30 and I'm pretty much done for the rest of that day weather I want to be or not.
Dh is home at 6 sometimes I help him with dinner.
On Tuesdays I help for an hour in my sons class, so I take a nap before I go and don't do computer that morning or visa versa.
Wednesdays always seem to be hard. The boys have music lessons on that day.
Fridays hubby is home and we do the food shopping and sometimes go to the chiropractor, and any in town errands.
The weekends mess me up because I get off my routine.
and sometimes over do it.
Flylady.com has a lot of house keeping ideas. I learned alot there, but I don't subscribe to the web. site anymore, It just got to over whelming for me. But I would recommend people with CFS to check it out, it has a lot of tips from how to make your sink shine, to excepting yourself. F.L.Y in flylady, stands for Finaly Loving Yourself.
Luckily I don't have a job, and I have some help form hubb and sons, although if they didn't make so mess my job would be easier. LOL
First? I'm going to make my bed every day. THAT alone WILL make me feel sooooooo much better.
THANK YOU!
I also go to o.a. 12 step and alanon so I try to get in 3 meetings a week. I also took up knitting so that is a joy for me. I love going to the park and just sitting there in my car and journal or read and also sometimes I bring my knitting with me and knit.Sometimes I will walk there too.I love being in nature.
I heard a couple of things I am going to try.Like making my bed everday.
Picking a room a week to work on each day.That sounds doable.
I do write a daily list and cross off things when I get them done. I try to do the most important one's first and go from there.
thanks everyone
take care
Kim e newbie