Discussion in 'Fibromyalgia Main Forum' started by Leaknits, Jun 12, 2008.

  1. Leaknits

    Leaknits New Member

    Dear people,

    I read many of the posts about pacing and still have some questions.
    Biggest one is: How is it done?

    I understand one needs to figure out how much energy exists and then not use it all.
    But my energy meter seems to be either broken or non-existent.

    All I do know is that one day out in The World means at least one day when no one sees me since I'm knocked flat into bed.
    Such as today. Helper drove me to a grocery store for a few needed things, we then had lunch, and I am wiped out!!

    Stupidly asked my dr about pacing a couple of days ago. Dr "I know about CFS and how to treat it" didn't know what I was talking about.
    That's not really surprising since he refused to write order for ABX despite the fact I had big need of such; the usual sinus, sore throat, lymph issues we all know too much about.

    After a month of dealing with his doing nothing for me, I flat-out TOLD him I needed at least one course of antibiotics.
    Am halfway through the second course now and am not getting better as fast as he thinks I should.

    Right. It's my fault he wouldn't do anything for me when I asked him to.
    This boy seemingly can't just feel the swollen lymphs, no. He has to poke his fingers into the lumps until I push his hands away and tell him to stop. He responds, just like clock-work, "Oh, did that hurt?"

    Uh, yeah. Infected and swollen glands hurt, doc. So his next question was "Have you cut your hands recently? That could be the thing that's causing the infections...." was just too annoying.

    This know-all-about-CFS person is a lying sack of excrement and will be replaced if I can find someone who 1)accepts my insurance and 2)really does know how to treat the dd.

    One thing he hasn't learned yet is that not all of us can handle steroids.
    I'm tired of being offered steroids at each appt and having to explain I'm allergic to the things, they can knock down what little immune system we have, etc.

    I'm sorry, this sincerely DID start out as a How To Pace question and turned into "My dr is a ____ fool" rant. Please accept apologies!

    Now. HOW does one pace, please?

    Thanks in advance,

  2. cookie1960

    cookie1960 New Member


    I suffer from FM, not CFS...but I believe both benefit from pacing. My pacing consists of a schedule. I get up at the same time each day, and go to bed (not always sleep) at the same time every day. I take my meds and eat my meals on a pretty tight schedule.

    My best time is mid-morning - so I try to schedule all activity for that time. Dr/dentist/groceries/errands,etc.

    I rest/nap at the same time every day...but in bed, not on the couch.

    If I am able to do any type of housework - I go slowly and take frequent breaks. My cooking has become the basics, but actually more healthy.

    BUT...If I'm having a flare with bad pain/fatigue, I'm prepared to rest and not do much of anything. My body tells me when it's time to "re-charge".

    Hope this helps. It has helped me with my every day life.


    p.s. Your dr. is an idiot.
  3. moi482001

    moi482001 Member

    since it really central to being able to do things.

    Here goes: after 8 years since my diagnosis and many more before when I was simply drained, the answer is, drum roll,
    none. This is my opinion, however tainted it may be. Some days, you try to do things gently, one thing at a time, and you end up giving up and sitting in a pile or just going back to bed. Other days, you wonder how you were able to do it all and still standing. Of course, there is always tomorrow to remind you. Along with the pacing, there are also the mood swings, call it depression, that kind of throw every theory out the window. So, how do you cope? One option: Go with the flow. If all you can accomplish is to take a shower, well, hey, at least you smell nice. Or, another option I have used is: xxxx xx, I'm doing this if it kills me, and I know it won't, but might be a little train wrecked, and off I go. Some days, it backfires in a few minutes and I cry my head off. And other days, I get thru it, relax, cry and hope the pain subsides. Kinda crazy you say? That's my crazy way of dealing with this, not perfect, but what option do I have?

    Good luck with finding a solution, maybe you can find a good one, so let me know. None of these comments are meant to be flippant or annoying.
    [This Message was Edited on 06/12/2008]
  4. msbsgblue

    msbsgblue Member

    I pretty much agree with Cookie except thatI do what I have to between 2-4 P.M. Mornings do NOT work for me it takes me 2-3 hours after I get up to be mobile.

    Pacing yourself means you make yourself do less. You don't wait until after all you do is done.

    Today was a good example for me: My perrenial flower bed needed them old mulch raked out and new put in. So I made this my 2-4:30 project.

    How much did I get done and what did I do? I raked for 10 minutes then took a 10 minute break, back and repeat over and over. I got about 3/4 of the probably 15 X 8 ft bed done today. I loaded what I raked into the wheel barrow which my DH took and dumped each time.

    I did not get any of the new mulch down today.

    30 minuters after I came in and sat down my knees are so sore that I can barely get up.

    Then I came in watched the news for an hour and decided to cook an easy dinner, so I put pork chops in the oven so I can add BQ sauce later. We will do a baked potato and I will put a canned vegie on the stove in a bit. Meanwhile I am resting again.

    That is pacing. Although some days if I am not feeling real well I may do nothing.

    One day I vacumn, one day I dust, one day I clean 1 bathroom, and the other one another day.

    My house is always clean and neat with rotating this way.
    [This Message was Edited on 06/12/2008]
  5. Lichu3

    Lichu3 New Member

    Detailed info on pacing:
    [This Message was Edited on 06/12/2008]
  6. moreinfoplease

    moreinfoplease New Member

    frustrations, and being fedup with the lousy drs out there.

    I have mostly been doing as I can without pushing myself too much, as others described also, but have not been satisfied with the vagueness of that. I just read a formula on Dr. Myhill's website. I printed it out but have not done it yet. It is kind of complicated, but is a formula for figuring out a good energy envelope to stay in so you are not doing to much or little. You can read about it at

    good luck!
  7. Leaknits

    Leaknits New Member

    Cookie1960, Moi482001, Msbsgblue, Lichu3, Moreinfoplease, Caledonia...
    Dear People:

    Thank all of you very much for the responses!
    Hmm, it seems I've Sort Of done the pacing thing, but haven't learned all the steps yet. Actually some "steps" just aren't possible if a person is dependent on a helper. Bless her, mine has a car and will take me places when her life and family, etc., allow.

    For instance, mornings are the time when I can get anything done...that's if the things are going to get done at all. Starting out fairly early yesterday worked but at the time when a nap is necessary and sometimes possible, I absolutely had to eat. Being low-sugar is no fun at all and means that grazing has to happen so it's a bowl of cereal first, a piece of fruit later on, maybe a sandwich some time later, etc.
    Got home, shoved groceries into fridge and shelves, fell on the bed but despite exhaustion could NOT sleep because it was after the time my inner clock allows sleep.

    Oh, how I'd love to sleep/wake at a set schedule!! This morning, my eyes popped open at 4:30 and that was it for sleep. As Marta608 (HI, MARTA!) said, paraphrasing, if a nap doesn't happen in the daytime, night sleep isn't much good. She's so right!
    Hang it all, we HAVE to sleep when our bodies say so. The World doesn't seem to see it that way; I've been called lazy so often I wonder if I should change my name.

    It's too true that when we let ourselves look at all the stuff that needs to be attended to we can get so overwhelmed that all that's possible is to go fall on the bed and cry. Right now, I could be bringing in laundry that's been hanging out there for 3 days (I think it just might be dry by now, lol), there are dishes in the sink, the carpet needs vacced, there's an ever-growing mass-mess of fallen leaves to rake up, and guess what? I'm not going to do any of it.
    Not right now, anyway. Today is Do Nothing Day because I needed groceries yesterday. My Today Job is to revel in doing nothing and The World can just leave me alone.

    But I did get a shower, so I do at least smell good. LOL!

    Again, my thanks to you all.
  8. doloresf1

    doloresf1 New Member

    I have no real advice. But, I have a few suggestions as this has helped me tremendously in the past. I'm still learning too.

    First, I keep shopping trips short. Never more than an hour or so. Can you go to a smaller store so you don't have to push a cart so terribly far? I find that exhausting!

    Or, can you get your produce, meats and dairy one day, then another day go to the store and cover the grocery aisles? I've done this on occasion.

    I'd not try to eat out after grocery shopping. That's too much for me. But, I usually buy a sub in the deli and bring it along home for my lunch, that eliminates cooking for that day.

    It's trial and error. Learn what works for you.

    Good luck to all of us!

  9. Leaknits

    Leaknits New Member


    Thank you for sending me your good ideas. I surely wish the Grocery Outlet (big store, low prices) could be closer than the four towns from where I now sit!

    It would be great to split up the shopping into a few days. A lot of "ifs" are involved in that, though. If I can be pried out of the house, lol. If there is enough energy to go there. If my helper has time (bless her heart, she has a family and a life... ), and a really big "if" which has to do with Oh bleep, I have to go to the hospital xray lab and that's totally in the opposite direction from the sort of affordable store, no way to combine errands today...

    I need to clone myself; that way, one of me could stay home and do necessary things there while another would be the one to deal with the outside world.
    No, wait, lol. That won't work; I'd have to spend $$$$ to support two of myself, :).

    There's a possible move in the future; bet I learn a thing or two about pacing if I have to shove stuff into boxes AGAIN.