Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Listening to our bodies

Discussion in 'General Treatment' started by MeSci, Mar 23, 2015.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,968
    Likes:
    12,806
    Cornwall, UK
    I was looking for a section or sub-section on pacing and was surprised not to find one, given how central it is to illness management.

    Anyway - it has occurred to me that although we repeatedly (not least myself) talk about listening to our bodies, we rarely define this clearly, and it may be hard for newbies especially to understand what is meant or how to do it.

    I wonder whether we all even mean the same thing when we talk about it!

    I thought it might be a good idea to discuss what it is and how to do it.

    I'm a bit tired at the moment so can't think very coherently, but I'll try to start.

    When my muscles are aching or weak, they are telling me to rest.

    At better times, I may feel a subtle involuntary contraction in a muscle (not the twitches that sometimes happen in my muscles when they are recovering from being used), and it just feels (instinctively?) as though it is functioning well - it feels good. Then I may try a few movements using the muscle, and if that keeps feeling good I may do it for a few minutes, e.g. bending and stretching, sometimes in the course of an everyday activity.

    Or when walking along, I may remember a set of muscles that I 'rediscovered' recently and thought might be useful for walking, and try using them during walking. As soon as those muscles feel tired, I will stop and start just using those that feel least tired. If necessary I may revert to trudging along, dragging my feet. It may not look nice, but it uses less energy and I can walk further.

    Sometimes it's obvious - if you are having to reach up to do something your arms may become very weak and quite painful, and you have no choice but to keep putting them down. Then it's really best to stop the activity, but necessity may make it impossible. Another day it may be easier.

    Sometimes it's best to pre-empt listening to your body, and take preventative action such as resting as often as you can during an activity so as not to get tired in the first place. It may take a while to learn how much, how often and for how long you need to rest, not helped by the fact that it will tend to vary from one day to the next. So then the listening comes in again. You may not feel tired, but you find quickly that you are fatigable that day - you can't do much before getting fatigued, so will need more-frequent rests.

    I think it's a never-ending process of learning, but you can get better at it over time, and get more done while getting less PEM.

    I'll be interested to hear other people's ideas. It would be nice to be able to sum it up in a few words!
     
    CantThink, Hanna, zzz and 6 others like this.
  2. cmt12

    cmt12 Senior Member

    Messages:
    151
    Likes:
    130
    This is ideally how pain is supposed to work right, at least a large component, which is a signaling device. However, we are in an imbalanced state; we are stuck to some degree in that pain state (Sympathetic nervous system).

    In a healthier state, you would reach up, feel pain, which gets translated into "I can't do that" and then the pain signal ceases. A few days later, you check again.

    In our state, we reach up, feel pain, get the "I can't do that" feedback and then that loops over and over constantly throughout the day sometimes at a subconscious level outside of our awareness.
     
    Mel9, August59 and oceiv like this.
  3. SpecialK82

    SpecialK82 Ohio, USA

    Messages:
    992
    Likes:
    819
    Ohio, USA
    Yes, it really is never ending learning and training yourself.. My good ME doc suggested that I lay down once a hour for 5 minutes to get the blood flowing back to the brain. No matter how much I try to be mindful of this, I usually don't lay down every single hour and then I'll get increasing headaches/dizziness/sick feelings until I do. You would think that I would always pre-empt that feeling, but I'm constantly caught off guard and must lie down for a bit. I am definitely getting better at it, especially at not pushing muscles past their limit as MeSci says, but have not perfected it.
     
    MeSci, CantThink and Mel9 like this.
  4. SpecialK82

    SpecialK82 Ohio, USA

    Messages:
    992
    Likes:
    819
    Ohio, USA
    Totally agree, and I also think that is the reason that we push beyond our muscle pain to try something. A healthy person feels pain and pulls back, but we push through at times because we are always in pain and it doesn't get our attention to stop in the same way.
     
    CantThink, Mel9, August59 and 3 others like this.
  5. alex3619

    alex3619 Senior Member

    Messages:
    12,489
    Likes:
    35,072
    Logan, Queensland, Australia
    There is the odd thread on the topic, but perhaps not enough to make a complete subforum.
     
    MeSci likes this.
  6. Mel9

    Mel9 Senior Member

    Messages:
    415
    Likes:
    982
    NSW Australia
    Yes, that is true for me too. As I am now always in pain/fatigue I have no choice but to regard this as my new 'normal'. If one is stuck in a pain stAte a bit of extra pain may seem irrelevant. I need to train myself to heed my HRMonitor and lie down in time to prevent the next total crAsh.
     
  7. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    If I wait until I'm fatigued or in pain, I'm way past my PEM limit. In order for me to pace properly, I had to use my HR monitor and stay well below my AT routinely. It wasn't until I trained myself to always stay within my envelope that I stopped having constant pain and utter exhaustion. "Reading" my body didn't work for me at all. It doesn't send me signals until it's far to late. That may be the delayed factor of PEM.

    I cut my activity back hugely -- well over 50% -- so I thought I was pacing well. Wrong! I was still going over my AT most of the time. I had to cut back to about 10-15% of my previous activity to be pacing correctly. Later I was able to increase my activity again, but not until I went through several years of minimal activity and a number of treatments.

    IMO, pacing does not treat the illness, but it can improve quality of life and allow the body to heal (a bit) and help symptomatic treatments work better. In other words, good pacing won't "fix" ME/CFS, but symptomatic and pathogen treatments won't work well if we're constantly overtaxing our bodies. Good pacing might also relieve some of the symptoms that are directly related to overexertion -- some of the pain, and some of the exhaustion, not all.
     
    SpecialK82, MeSci and oceiv like this.
  8. lansbergen

    lansbergen Senior Member

    Messages:
    2,505
    Likes:
    2,710
    Well said
     
  9. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,560
    England, UK
    The most clear signals I get are autonomic related I think - mainly POTS symptoms. Generally I find them easier to 'listen to' than pain (as I've learnt to ignore a lot of activity related pain), and I'll usually drink water and go to bed or at least lie down on the couch. I definitely notice the negative side of my HR and BP changes because it makes me feel so ill. I do use a HR monitor sometimes too (used to use it daily).

    Recently I've been getting the sore neck/sore throat again. I had this early on in my illness for years and then it seemed to go away. Now if I'm really overdoing it, it comes again. It's a big red flag. Ignore it at my peril!

    I think I have adapted quite a lot, so I do tend to pre-empt and try to make my actions 'M.E.-friendly' if you will... E.g. cooking using an ironing chair/stool, preparing foods in larger batches do I don't have to do it as often and taking a lot longer to prepare veg by inserting rests etc. Conversely if I have to do washing (usually when my parents aren't here) I tend to do it in smaller amounts so there's less to hang up in one go as not only is it really hard work but incredibly painful.

    In personal care terms, I again have adapted my routine so that each stage is separate and has a rest between. I can feel the need for the rests as if I have a wash, I feel weak afterwards. If I get dressed I can feel my HR rising and weakness so I need to lie down. This works fine most of the time - unless I'm having to go out for an appointment or someone is coming here at a certain time.

    Probably my biggest issue with pacing and listening to my body is the unavoidable stuff - especially appointments (had one where I had to be there for 8.30 a.m. recently :eek::meh: and it meant leaving at 7.45 a.m. - this is a disaster for me. I might as well just wipe days from my life lol!). Also family visiting, social things and work (I occasionally do freelance work)...

    As they all involve other factors out of my control they are where I am most likely to not be able to pace effectively and have a worsening. I have noticed when I'm busy concentrating on those type of activities cognitively, I lose the ability to listen to my body!

    Because of the above paragraph, I've tried to assert myself more and cater to my needs more. The upshot of this is the loss of income (as my last contract wanted tight deadlines and extreme availability - too stressful and erratic), remaining housebound (not seeing anyone) and so on.

    When you're socialising with people, and your throat/neck soreness starts... You can't just get up and leave (well I can't as I can't drive), so to avoid ruining everyone else's fun I have to not go in the first place or stay and suffer. The same with walking - if I over estimate my ability, I start to feel super weak, extremely sweaty:whistle:, sometimes dizzy or faint, and then I'm facing how to get back. So many times that's happened (it's enough to give one agorophobia).
     
    MeSci likes this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,968
    Likes:
    12,806
    Cornwall, UK
    Oh dear - that's an example of how we are different, so brings in yet another level of complexity! When I was well, I would push through the pain, as I knew I could get away with it. I think that most of us still have the urge to do that, but have to use self-discipline to resist the urge, and NOT push through.

    But I had forgotten about the large percentage of sufferers who have pain all or most of the time. You must have to learn to differentiate between your 'usual' pain and 'unusual' pain, for want or a better word.
     
    CantThink and SpecialK82 like this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,968
    Likes:
    12,806
    Cornwall, UK
    Are you having electrolytes with your water? It is common for us to be deficient in electrolytes, and drinking plain water exacerbates this by diluting your body fluids further.

    I'm rather (just typed 'arther'!) evangelical about this since developing severely low blood sodium (hyponatraemia) due to an ACE inhibitor.

    I can so relate to your other stuff. It's so hard to fit into the 'rest of the world' with this illness. We need a new world that's specially designed for us! :lol:
     
    Last edited: Mar 24, 2015
    CantThink likes this.
  12. SpecialK82

    SpecialK82 Ohio, USA

    Messages:
    992
    Likes:
    819
    Ohio, USA
    Yes, a world for us - with chairs everywhere we go, and benches where we can lie down. And no music playing in stores. And gluten-free, sugar-free, etc. restaurants with drive-through windows. Ahhhhh..........that would be the life! :Do_O:balloons:
     
    Tammy, MeSci and CantThink like this.
  13. CantThink

    CantThink Senior Member

    Messages:
    775
    Likes:
    1,560
    England, UK
    Yes I am! I should have said - d'oh! :rolleyes:
     
    MeSci likes this.

See more popular forum discussions.

Share This Page