1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Pacing

Discussion in 'Lifestyle Management' started by GoddessinRepose, Apr 22, 2010.

  1. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    . If you are removing that one before you start to type your response it will not appear as quoted text. Just a thought.[/QUOTE]

    So far I love this forum!!! So informative! Was the class you took Bruce Campbell's? I have never had to use a cane, wheelchair or anything before but hardly being able to function has made me very willing. Though at the Dr. when I had to use the wheelchair the first time I did cry. Now I am in the mode of I am going to do what I need to do to take care of myself and conserve as much of my precious energy as I can so I can use it where I really need it.

    I have done some form of push/crash for 18 years and it's gotten me where I am today--hardly able to function now. I am so ready to do it a new way and use the pacing because it really seems to work. It is a challenge; that's why the support in sharing is so helpful. When I went out today to do my session it was such a beautiful day--there were so many things I wished I could do. But I am grateful that I got out in the beautiful weather if briefly and after my session my body was very clear that I needed to go home and lie down immediately!

    I hate feeling depleted all the time. I think another gift of doing the pacing will be that I will be doing less but feeling better more--while doing things and afterward. I'm already experiencing some of that.
  2. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    Thanks Mithriel. Your feedback is excellent and taken to heart. My goal is to do structured pacing and have some flexibility and be gentle with myself. I am already feeling a little better today because of the steps I have taken. :Retro redface:

    I had read many times--do 50% of what you think you can do. I never did that until now. Before I did 50-75% more that what I thought I could do. Short term gratification but long term consequences.

    This is my opportunity to live a very mindful, simple life; something I've been interested in but didn't get to until my body forced me! :Retro tongue:
  3. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    My Energy Bank Account By Vicki Lockwood

    My Energy Bank Account
    By Vicki Lockwood

    Note: Vicki Lockwood, a writer and retired paralegal, is a CFS/FM patient from Missouri and a graduate of the CFIDS and Fibromyalgia Self-Help course. Her articles have appeared in magazines and newspapers.

    For a long time, I had known that overdoing resulted in flares, but I had not given myself permission to limit my activities. Then I did something simple that changed my life in a dramatic way, allowing me to treat my body with respect.

    The Energy Bank Account
    While I was taking the CFIDS & FM self-help course offered through this website, I learned about pacing to avoid flares. I decided to apply pacing to myself by creating what I called My Energy Bank Account. I began by listing everything I do, from showering to eating an apple to having sex. Then I assigned a positive or negative number to each. Things like sleeping, daytime rests and prayer add to my energy and get positive numbers. Most of my activities reduce my energy and so get negative numbers.

    Once I had assigned numbers, I used the plan like a check book, starting the day with the positive number provided by sleep and then deducting and adding with each action. It turned out some of the negative numbers weren't high enough, which meant some things that I thought were not so taxing, are much more so. For example, I found that taking on the phone and taking out the garbage are more draining than I had thought. Also, I found that every day is different and I have to adjust my numbers depending on such things as the weather and how people in my family are doing. I also learned to add extra points to an activity when I felt stressed.

    I start the day by giving myself a number based on how well I have slept. If I get nine hours of good sleep, I give myself 90 points, which is a comfortable cushion above the level of 60, which I associate with a flare. If I get fewer hours or my sleep is interrupted, I deduct points. By making this calculation every day for a while, I realized that I was on the verge of a flare at the start of any day when I had slept badly.

    Recognizing the link between poor sleep and flares encouraged me to protect my sleep time. I began to prepare for bed earlier and to search for ways to maintain uninterrupted sleep during the night. Also, I tried to work out a schedule in the morning to minimize my expended energy, by making my morning routine predictable. I did this by keeping my activity simple, by having easy breakfast foods available and by eliminating unnecessary activity.

    Another discovery was finding that an activity might have a positive or negative number depending on circumstances. For example, yoga is usually positive, but can be negative sometimes, too. If I'm looking forward to it, and I have my pad and towel handy and there is a quiet place where I can go to relax, then yoga is great for me. But if I can't do yoga until I've moved furniture, found my mat and towel and argued with someone about how loud the TV is, then it's a negative. I learned that if something positive turns to a negative, it's better not to do it.

    Once I got my bank account up and running, and had used it for a month or so, I found that pacing was no longer something I had to think about unless I was doing something special, like taking a trip, going on vacation, or had been thrown into some unusual situation. Unexpected situations call for extra measures such as using a timer to limit activities, taking time outs for a nap or some meditation.

    The Energy Savings Account
    I invented a new term to help me with special events: My Energy Savings Account. This is different from my regular Energy Bank Account, which I use to pace daily activities. The Savings Account is my way to store extra energy for special occasions. Special events are much more draining than daily life, but I found I can make them more enjoyable if I make deposits in my Savings Account with naps and other positive activities in the days or weeks before the event. I try to save up a hundred points a day for each day of the event. The higher my savings, the better chance I have of getting through the special event without a flare.

    A Bank Account Example
    To give you an idea of how the Energy Bank Account works, let me give you an example.

    Let's say I got nine hours of sleep last night, but with some interruptions, so I start the day with 83 points. After doing my morning toilette (-5 points), helping my husband shave and dress (-6), getting breakfast (-4) and feeding the pets (-3), my balance would be down close the level of a flare. It is time to make a deposit to build up the balance. Taking a rest or meditating for half an hour adds 15 points and puts me back up to around 80.

    Then I might spend some time on the computer (-10 points), do the breakfast dishes (-4) and make lunch (-4). This brings my balance back near 60, so it's time for another deposit. I might spend some time alone reading for pleasure or use the time for prayer (+10). After that, I would have another session on the computer, using 10 energy points and bringing me back to 60. (By the way, I use a kitchen timer to limit my computer time to twenty-five minutes per session, followed by at least five minutes of stretching.)

    I then add lots of points to my balance by taking a long nap (+30). I might sleep for the whole time or sleep for part of the time and rest quietly for the remainder. A nap might be followed by more time on the computer (-10) and some time paying bills. The "cost" for the latter depends on how stressed I'm feeling about the bills at the moment. If I am worried that the payment will be late, I double the energy cost (-15). Bill paying might be followed by yoga (+20) and making dinner (-10), leaving me with 75 points.

    I like to write in the evenings. Writing is an enjoyable activity, but, because it involves brain work, is an energy drain (-10). And there is always the nighttime feeding ritual for the animals (-3). I also have to make sure my husband and I both take our evening meds (-2). Then it's time to make a big deposit by going to bed for the night.

    In Conclusion
    Using the Energy Bank Account to pace myself has helped me in several ways. Most importantly, it has given me permission to take care of myself. Previously, I had rarely told anyone no and tried to do everything I thought I was supposed to do. Now I listen to my body and honor its limits. Remembering the cost of an activity, I can avoid overdoing. The reminder is especially useful for those things I want to do, where I can be tempted to forget the cost.

    Also, by giving me a practical way to use the idea of pacing, it has enabled me to reduce my pain and fatigue and increase my sense of control and well being. All it took was pen and paper, and some thought. Balancing this checkbook is a lot easier and more enjoyable than the one I use to keep track of household finances. And in the long run, it's a lot more important.
  4. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    I think I did too much yesterday. :Retro mad: I didn't sleep well the night before at all--couldn't fall asleep until after 1:30! When I woke up I felt like I really should spend the day in total rest cure--but there were things I planned & needed to do. My goal next time is to listen to my body--everything else can wait. Nothing is as important as my health.

    I went out and picked up my cane (which felt a little weird for me). It is metallic pink and I am in the process of blinging it up with lots of gems. I really need a cane with seat but think I will need to take it in steps. I stopped to pick up bread and then the Health Food Store for groceries--I had my list made out based on the layout of the store so I wouldn't be going back and forth at all.

    I felt OK all the way thru and started thinking, "Maybe I'm all better now!!!" :worried: I am amazed by this--I don't want to have to feel sick or wiped out to respect my body's limits.

    On the short drive home I started to feel wiped out, came home and rested the remainder of the day/evening. I'm doing so much less than ever before and it still seems to be too much. I think if I had gone to just one or two of the stores I may have been OK.

    I rested for about 2 hours and then made some stovetop eggplant parmigiana while sitting on my kitchen stool. I was so proud of myself. It's been weeks since I've cooked something on my own. I ate it with some ciabatta bread--delish!

    Online I ordered a portable shower bench and a rolling stool for the kitchen (my husband found it on eBay) last night.

    Last night I slept well--didn't get to bed until 11:00 but then fell asleep and slept in until about 10:00 and meditated for a while.

    I've been resting all day and working on the internet (which isn't total resting but I'm doing it lying in bed). I ordered supplements and emailed my husband a complete list for the other grocery store we go to (Trader Joes). He's going to go after work because I know I need to really rest today.

    My new mantra: LESS IS MORE!
  5. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK
    Sounds like you're making tons of progress in how you're approaching things - great idea about the store. I think it's trial and error to find out what you can do without getting wiped after because of the PEM (post-exertional malaise). Because the bad effects for us of activity are delayed, it's best to stop while you're still feeling fine (v. difficult because we can do so little in the first place). I really think that's key to recovery - I managed to get about 90% recovered for a few years using that strategy and am relapsed now having thought I was invulnerable (doh!). It takes a huge amount of discipline - that's where we CFS people have to put our effort, in not doing things!

    This thread has inspired me to cancel a weekend trip I had planned - I was going to go to a town 10 miles from here as my "summer holiday" and had had the hotel booked ages ago so I could keep resting between little toddles out but a couple of important appointments then got imposed on me the day I was going and the day I was coming back. I had been thinking I could cope with extra rest but I can't! I've just realised that, and that it was turning into a source of stress rather than pleasure so I've cancelled the trip. I can do it later in the year.

    So, I'm grateful for this thread! I think it's just prevented a relapse! It's great that we're here to encourage each other!
  6. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    Sasha,

    I celebrate your decision to place your health and self care first. It's hard to cancel events and plans especially when they are fun or enjoyable but everything we do requires energy. I planned to have a friend over Saturday evening and think I will need to cancel that plan as well. I am having a lot of upper resp flu symptoms today and think that having the visit will be too much for me. I know exactly what you mean when you say that the plan begins to feel as a source of stress. I think that's a good indicator that it's too much.

    Yesterday I rested all day and worked one 50 minute session. I came home afterward and rested. It was a big success--I did pretty well all the way through and didn't feel wiped out when I got home (a little tired but not wiped out--no crash). I didn't sleep well last night and it was rather cold here overnight and woke up feeling fairly ill today and need to spend the whole day in bed. Thankfully I don't have a client scheduled or anything I must do. :victory:

    It does take discipline to really listen to one's body and rest as much as the body needs. Yesterday was a challenging day emotionally. I shared with a girlfriend I haven't talked to in a while what is going on re. my relapse/acute phase and she cried and cried. It was not helpful.

    I used my cane for the first time going to and from the condo to car when I went into the office. When I came home there were 3 people in the lobby who acted strange/uncomfortable and one said, "What happened to you?" I said "I'm dealing with some health issues." Then another one was on the elevator with me and said, "Are you OK?" I didn't know what to say. I don't share personal health information with people who are not close to me. I said, "Everything is relative; I'm not dying!" I think in the future I'll just repeat, "I'm just dealing with some health issues" and if asked further say, "I'd rather not talk about it."

    My husband, who has been very supportive today was overwhelmed and stressing me out about keeping things neat and organized in the condo (!) and has cancelled going on a backpacking trip this weekend. I think the reality of what is happening is starting to sink in for him and he also overplanned himself--planning a backpacking weekend right after coming off of the busiest time of year in his work. I have taken alone time to rest. I do not want to deal with everyone else's emotional issues around my health right now. I understand that they have them but it just makes it harder for me and it is already hard enough. :Retro mad:

    I will rest and let everyone else take care of themselves today. I have moments of feeling very alone today. I'm so grateful for the support and connection we share on this forum.
  7. dannybex

    dannybex Senior Member

    Messages:
    2,161
    Likes:
    508
    Seattle
    Toxic chemicals in some baby wipe products...

    There's a concern that some baby wipes contain highly toxic chemicals. I don't know what brands are available in which countries, but apparently there are safer alternatives available because of these concerns.

    "The Environmental Working Group (EWG) hosts an online Cosmetic Safety Database (aka the Skin Deep Database) to give consumers information about the safety of common personal care products and the ingredients they contain. In the case of baby wipes, a common preservative ingredient known as Bronopol, or by it's chemical name 2-BROMO-2-NITROPROPANE-1,3-DIOL, has been given the highest hazard score possible."

    "According to the EWG's database, Bronopol is a known human immune system toxicant and a known human lung and skin toxicant. At low doses, one or more animal studies show brain and nervous system effects, gastrointestinal effects, and broad systemic effects. This ingredient is restricted for use in cosmetics in Canada and listed by the European Union as a toxin affecting wildlife and the environment."

    More info here:

    http://www.brighthub.com/environment/green-living/articles/48140.aspx

    And also here, which lists other chemicals, including chlorine:

    http://www.copperwiki.org/index.php?title=Baby_wipes
  8. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK
    It's a really awkward one, isn't it? Whenever possible, I use "I'm convalescing" or "I'm recovering from an illness" which at least lets people know it's not terminal and that I expect to get better (I don't have to tell them about the timescale!) and is also non-specific enough to hint that I don't want to be more specific (I hope). If it's strangers and they ask more questions I try and change the subject or try and laugh it off with something like, "even I'm not interested - let's talk about something else!". If I was really pushed I think I'd be saying something like "I'm sorry but I see my health as private" but no-one has ever pushed it that far.

    I'm sorry to hear that your friend and husband are having such a tough time with it - there is bound to be a transitional period when people first get to grips with it. You do right to let people take care of themselves - it's all you can do, and by looking after yourself you're indirectly looking after them anyway by not prolonging the stress and hence your ability to recover. Also, in time, you're likely to come across people who deal with it really well and give you energy rather than take it (not that your husband and friend mean to take it). There are some people who are real stars at this - I hope you encounter them soon!

    You've done really well with the pacing today despite being so unwell - I think you should be really pleased with yourself!
  9. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    Just connecting

    I've gotten more comfortable using my cane and dealing with people's questions about it. I'll have to take a pic and post it--it is metallic pink with tons of jewels! A lot of people just say, "That is so pretty, I love that!" :Retro redface:

    I just got the newly revised Bruce Campbell book for the online course and have started reading it. I'm working on my problems with sleep. :sleepy:

    I have such a narrow window of activity: 1 hour of light activity per day. I'm grateful I have that window of activity & I find it very challenging to do and get done the things I need to within that window. Everytime I try and do more, my symptoms flare (even if it is just stopping at a store for 10-15 minutes). It came to me (again) that I have to accept that this is my window or envelope or energy account balance and accept it and respect it. It is a work in progress every day :Retro tongue:

    I have started seeing a therapist to help me cope with the changes in my life that have come with this flare up and it has been very helpful; to share and be heard with ease and she also has given me some gems that have helped me & my husband & I in coping: thinking of the illness as a third party; uninvited guest that we can each feel frustrated or angry with and it doesn't feel as personal. Very helpful.

    My husband and I are working things out in a good way. I feel very vulnerable to be more dependent on him and also have a very low tolerance for empathizing with his frustrations etc. because I at this time I am so engulfed in my own process and getting through each day. The uninvited guest metaphor has helped a huge amount.

    I just did my one activity for the day; went to the grocery store. That took a lot of my energy. I will rest the remainder of the day/evening and watch a movie or some TV.

See more popular forum discussions.

Share This Page