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Pacing

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

  1. GoddessinRepose

    GoddessinRepose

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    I have had CFIDS for 18 years. I have recently had a big relapse (end of March) and have come to the awareness that I have been in some form of push/crash cycle all along even though I have done a lot of work on listening to my body etc. :worried:

    I am very interested in the Pacing info. & course by Bruce Campbell & have signed up for June. I've been using total rest and structured pacing when I need to do activity to help my system recover and form me I see the structured pacing as a lifestyle management tool that I will want to continue to use long term.

    Is anyone else using these tools and/or interested in giving & receiving support, feedback, goal setting, accountability & celebrating challenges & successes? Please post &/or contact me if you are.

    I'm new to the PR forum so just learning my way around. :Retro tongue:
  2. BEG

    BEG Senior Member

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    Hello, GoddessinRepose with a catchy, neat username. Love it.:Retro smile: I will certainly sign up for this. I would like to set a little goal each day to incorporate even more resting, I like to use pacing, switching, and resting. In other words, I will switch a brain activity to a physical activity like doing a load of laundry, along with pacing and resting. You went a long time in a push/crash cycle. Were you also working?

    Another thing I know that's important is limit setting. A timer would be useful to tell me to get off this forum and get some rest. :D:D

    It's very difficult to do this pacing and resting, but as you said it's a lifestyle management tool. And a good one.

    BE G
  3. dancer

    dancer Senior Member

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    I definitely need encouragement in this area.
    Monday I had a slight bit of physical energy - so I THOUGHT I paced well...doing laundry, cooking, gardening, other chores, with plenty of rest between each activity. Yet I still over did it hugely (which I realized when I "hit the wall" unexpectedly with huge relapse of all symptoms).

    Yesterday I recovered a bit of cognitive clarity. It felt so great, I dove in to a freelance project - nothing physically taxing, just computer work. But I lost track of time and didn't notice I'd overdone it until I stopped working. As soon as I stopped, all the energy drained out of my body in a flood. I had tremors, weakness, pain, "electric shock" feelings in my spine, shortness of breath, heart throbbing misery.

    Brown-eyed Girl, I like the idea of using a timer. I get "lost" in activities and don't pay attention to the time...and my body doesn't always react until AFTER it's over-taxed.
  4. Sasha

    Sasha Fine, thank you

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    I use an oven timer to time my rests (15 mins every hour) when I'm at home but like you, Dancer, I get absorbed in doing stuff and lose track of time and then I'm fried, particularly if I'm out and about.

    I just had a search on Amazon & Ebay for "vibrating timer" to see if there's something I could set before I go out to remind me to stop when I've been walking for 20 mins or something (if I try to use my watch I always forget what time it was when I left!). On the UK sites I found this and this so I guess the answer is, "yes"! There were loads on US Amazon with the same search terms (here). (If these links don't work after a while, just go to the sites and search on "vibrating timer").

    Time to get myself one!
  5. GoddessinRepose

    GoddessinRepose

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  6. GoddessinRepose

    GoddessinRepose

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    How do you get the Originally posted by and then the quote from the previous post that you're responding to?

    I tried using Reply with Quote button but didn't work?

    Tx!
  7. Sasha

    Sasha Fine, thank you

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    Hi Goddess - I think pacing is great too - I'm worried that you are maybe getting wiped out then resting loads to recover, though, which is not my understanding of pacing. I think it is better not to exhaust yourself in the first place - reduce your activity to what you can manage without getting tired, and alternate activity with rest - not waiting to get too tired to continue before you allow yourself rest.

    I know this is hard when you are still working (I'm no longer able to) and have to earn a living and I'm no "pacing angel" (I'm sure none of us are, it's so hard to be disciplined). I think deconditioning is a much less important issue during a relapse than ensuring that you don't push it and then crash.

    By the way, if you are logged in and hit "reply with quote" it should work - if it continues not to and no-one on this thread can help, maybe you could try posting a question in the Nuts & Bolts section.
  8. GoddessinRepose

    GoddessinRepose

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  9. BEG

    BEG Senior Member

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    Unfortunately, GoddessinRepose, when one is relapsed, rest is the best treatment strategy. I get ready for a Dr. appt. a couple days beforehand. I'll shower and wash my hair the day before. A couple days before, I'll iron an outfit to wear, (seated at my ironing board, of course.) For me, since I can do so little, it's all in the planning. I never make any stops on the way home from an appt. In fact, on appointment day, that's all I do. I know I will have post exertional malaise in 48 hours, but I won't be in a relapse.

    Will your husband pick up the grocery shopping duty when his work settles down? In the meantime, use the riding carts. I'm sure you've seen the energy saving thread. Plenty of good ideas in there.

    The last thing you want is for your relapse to become permanent. Rest and please keep us posted.

    I'm using my oven timer beginning today. Thanks for the encouragement everyone.

    BE G
  10. GoddessinRepose

    GoddessinRepose

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    Tx so much for your feedback. It seems I am still doing too much and need to really chunk it down further and do less and plan more. My husband is very willing to do grocery shopping etc. once his work slows down.

    I had already decided with clients I need to limit scheduling 1 50 min. session per day and see if I am able to do that. :tear:

    Good luck with using the timer today! Let us know how you did and if it helped :Retro smile:
  11. Sasha

    Sasha Fine, thank you

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    Sorry you're having to make these adjustments, Goddess, it's all a bit of a shock when you're suddenly forced into it! I would add that if you can order groceries online to be delivered to your home, it's a great help - in the UK the big chain supermarkets all do online delivery and you just book a one-hour slot for them to delivery and pay a small charge per delivery (which is free if you order a large amount). I hope there might be something similar for you where you live.

    As regards the doctor, I've explained to mine how difficult it is for me to come to the surgery because of my health and if I need to see him for anything that's just a conversation, we deal with it on the phone. Your doctor should be able to advise you on how to make the experience manageable - it would be crazy to be made worse by having to see the doctor! If you need bloods taken, maybe they can send a nurse out to you.

    Good luck! Lots of rest!
  12. Sasha

    Sasha Fine, thank you

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    There's also a good thread here on how to adapt to make your life easier doing everyday stuff - even though I've been mostly bed/sofabound for years I learned some new stuff.
  13. GoddessinRepose

    GoddessinRepose

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    Tx so much Sasha. This is really hard. :tear:

    I am going to cancel/reschedule one of my sessions today and limit time spent on phone etc. and focus on doing total bed rest as much as possible.

    I hope I don't have to let go of the remaining couple hours of work a week that I am doing but my body will make that decision for me. I hope if I rest all day and do only 1 50 min. session a day or every other day I will be able to continue. We'll see......

    I'll check out the grocery delivery options. I also need to allow others to help me more. AFLO (another frigging learning opportunity!:D

    It's a good thing I'm a movie lover! I'll be watching a lot of them!
  14. GoddessinRepose

    GoddessinRepose

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    Big Gratitude!

    I completely rested most of the day; probably need to limit my time on the internet more but otherwise I stayed off the phone, didn't visit with a friend who dropped off food because i knew I just didn't have the energy.

    I took a shower and allowed 1.5 hours resting time afterward. I went in for one 50 min. session and it went pretty well. I came directly home and rested the rest of the evening. I felt tired but I didn't feel a crash. YAY!

    I just emptied the lower shelf of the dishwasher and I think that was too much. I also walked too quickly from the living room to the bedroom a couple times--I need to remember to walk really slowly and mindfully.

    1 hour total of light activity per day seems to be my baseline (at least that's what it appears to be to me at this point). I can see the progress today! :victory:

    Big love & thank you to everyone who shared today--it helped me soooooooo much. :Retro redface: Who knew it would be so hard to do so little!

    I have to really hold myself back and walk really slowly and breathe deeply or it's too much for my system. I read and am using some of the ideas on the thread energy savers for people with moderate severe symptoms.
  15. Sasha

    Sasha Fine, thank you

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    It sounds like you're making really good progress on pacing - I also find showers exhausting and have a flannel wash most days but I found a shower board (on another thread) which helps me not to get too tired - it's a plastic board that fits snugly with adjustable rubber fixers across your bath and you can sit on it while soaping & drying yourself (search on Amazon on "Savanah bath board" - they're in different sizes eg this one).

    I wonder if you have thought about whether you have orthostatic intolerance (those of us who do struggle to take a shower because it involves standing upright for too long, plus heat) - it's not necessarily to do with feeling dizzy as many think and several of us have found with have it by doing the "poor man's tilt test" - see this thread.

    Hope this helps, happy resting!
  16. Mithriel

    Mithriel Senior Member

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    I use baby wipes most days and only have a shower when I feel up to it. We collected them locally to send to the marines in Iraq so if it is good enough for marines it is good enough for me :Retro smile:

    Pacing has become part of organised programmes but it originally meant never over doing things. Stop when you start to feel it, rest then go back and finish. If it takes a few hours to vacuum the room so be it.

    The pace and switch that was mentioned is good too. Being too rigid is not always a good idea as the illlness fluctuates. It is rest when necessary that is important.

    Spread tasks out.

    For example the days I am well enough to cook I try to prepare as much as possible throughout the day so that I just have to assemble the meal at tea time. On days you are working don't do any housework that sort of thing.

    I know someone who did a very rigid active pacing. She used a timer and increased by 5% when she felt able. This involved walking for seconds to begin with. She improved quite a lot, not to the point she could work but she could self care. It is what works for you.

    It is very difficult when you have life commitments so if you go wrong and get worse don't blame yourself.

    The original advice for ME still remains valid. On a good day do 75% of what you can do on a bad day Many of us have never been able to that but it is something to aim for :Retro smile:

    I hope you manage to feel better soon.

    Mithriel
  17. kerrilyn

    kerrilyn Senior Member

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    I went through a month-long course of management strategies for FM symptoms and pacing was a huge part it. I don't know where I'd be now if I didn't go through that course because it taught me a lot about listening to my body and resting when I need to, but I've probably forgotten most of it now. And part of my 'I want what I want when I want it' attitude is still here and I get either defiant, stubborn or stupid and just push through when I shouldn't.

    We were taught to use a timer, but I never have and I REALLY should because if I get doing an activity I still don't listen to cues to stop like I should. I spread out activities like cleaning now and if one room takes all day or a couple days, as frustrated as I get about that it's just the way it has to be. And I rest a lot more. But I think I've live in denial a lot of the time too because I have yet to use scooters in stores, a cane or a handicap sticker when I definitely need them. It would be the smarter thing to do.

    GoddessinRepose, I was at the doc for bloodwork this week too. Went to the wrong building at first, which made the trip longer, found the building and there was no parking close by (this is where I was wishing for the placard in my window), had to search for the office and then get 9 tubes of blood taken when I have so little to spare. ....I was DONE in that day and I'm still feeling the effects from it.

    I've learned so many things from being on this forum the last few months, I think you will really enjoy it here :Retro smile: About the quotes, you almost have it. See at the front of the quote there is the word quote in brackets, there should also be one at the end with a forward slash [/quote]. If you are removing that one before you start to type your response it will not appear as quoted text. Just a thought.
  18. GoddessinRepose

    GoddessinRepose

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    I am feeling a little better today--the resting & pacing is working! I also went to bed earlier :sleepy:--at 10:30. My goal is to go to bed at 10:00; stop TV or movies at 9:00 and read for 1 hour to wind down (and I love to read). And instead of thinking--Oh good, now I can do more, I'm thinking I need to keep doing what I am doing and keep my activity limited to 1 hour. I'm very excited! The only thing I'm thinking of doing more of is reading in bed or on couch.

    I signed up for Bruce Campbell's online class in June on lifestyle management and asked for support in pacing before then and a woman who went through the class (all three levels) has volunteered to give some online support. I love it when the universe gives me exactly what I need! In addition to the support on this site I feel I am on my way! Vicki (my pacing mentor) wrote an article about how she manages her energy bank account and in the article she mentioned the importance of sleep (which I know but need to keep working on to get & keep a consistent sleep routine). I'll try and figure out how to post the article later today.

    I've been thinking of getting a seat for the shower--is the bath board removable so that I can take it out when I'm not using it & my husband can stand in the shower? If not, I'm going to look for a folding stool I can use.

    I was tested with the sitting down and then standing up and taking BP test for orthostatic intolerance--but it was not with continued standing. I'll check out that thread later today.

    The stool I am using in the kitchen is great help--I want to get one on wheels so I can move about without having to get up and physically move the stool. Our kitchen is very tiny but every bit of energy I can conserve to use for my healing and for other essential activity is worth it!

    Today I have one 50 minute session scheduled at 2:00. My plan is to do my Migun massage bed (really helps manage & reduce my muscle pain & inflammation), have a smoothie and rest until I go. I want to get some sushi for lunch--I think instead of going to pick it up, I'll order it to be delivered to me either at my office or when I get back home.

    Then I will rest the remainder of the day--watch movies & read and spend limited amounts of time on the internet. :sofa:

    Talking on the phone seems to take a huge amount of my energy so I am really limiting that to very short, several minute conversations.

    Has anyone figured out how to have their email formatting so that smilies are available without having to click the Go Advanced button? I thought choosing the WSISYG format on settings would do it but it hasn't.
  19. Sasha

    Sasha Fine, thank you

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    Wow, sounds as though you are really going for it - great! In fact, you have inspired me - I was all geared up to go through Bruce Campbell's book and put it into action but got derailed by something that took my attention away for a couple of weeks and I must now get back to it. His book is really good - it's not expensive and I wouldn't wait til June to have it all-in with the cost of the course.

    The shower seat is fixed in place by sliding a couple of fixers out from the centre until they meet the sides of the bath (it's rubber where they touch the bath) and then tightening something so they stay put. You could keep removing it and putting it back. However, I prefer to have my seat fixed at the far end of the bath away from the shower so that I'm not under the water while sitting on it (otherwise I couldn't get any soap to stay on me!) - I just stand and put myself under the shower to wet my skin, sit down and soap myself and shampoo my hair, stand under the shower again to rinse off, and then sit on the board to dry myself. There would be plenty of room for me or anyone to just use the shower normally, even with the seat fixed in place.
  20. GoddessinRepose

    GoddessinRepose

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    I am going for it! Not being able to function hardly at all has been big motivation! :Retro wink: Bruce Campbell's book is included in the price of the course and is currently being revised--so I will get the newly revised copy mid May and then the online class is in June. I'm so glad you have the book too--we can work on it together--I just won't have mine for a couple weeks.

    I found a portable shower bench that costs less and is easily removed (made by Carex). I am going to read more reviews but think I will buy that one. I am thinking of getting the cane with seat too--there are a couple models so need to research which is the best one. I always thought if I had to get a cane I would get a really cool one--fuchsia & gem encrusted. The one with the seat is not very attractive--but I really need the seat and I will jewel it up with lots of white & fuchsia gems! :Retro tongue:

    So far big progress today. I am on plan--I did really well with my session. I rested and did a Migun before I went in. Then I walked/moved slowly. I felt clear headed thru the session--it was great. I overdid it a smidge--I was feeling so good, so hung this sun high on the wall. After I finished hanging it then it felt like too much. I came home and have rested since--just watched a good movie on Netflix. I love Netflix--there are thousands of movies online for instant access. We have a big DVD library too but with Netflix I don't have to get up.

    I just ordered sushi to be delivered and will rest, sushi it up, movie it up and read a bit. Now I'm having fun! :D

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