Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 20, 2013.
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Thanks for sharing and for the links Jody. I've found pre-emptive resting to be quite beneficial for increasing my overall up time too. I haven't heard of the Ultradian Cycle, but it sounds interesting......need to check it out.
Problem is, even after 20 years learning this lesson, I'm terrible at making myself stop when feeling good, better. Another problem I have with this is that the stress boundary is not constant. It's often unpredictable. Also for me, crossing the anaerobic threshold is only one of many ways to cause a crash; watching my pulse rate just isn't much of a tool. I've found the best tool to be listening to that internal voice telling me to stop, which is always well before I intellectually believe it necessary.
There are so many cycles within cycles within the body that i think are out of whack and not in sync or too low or too high. Circadian rhthym with melatonin, cortisol rhthym, other hormones are rhythmic too and also neurotransmitters are involved as well as counter balancing each other like dhea and cortisol or insulin and glucagon etc. I think this is why many experts have mentioned cfs/me is not only immunological/infectious but also neurological as the hypothalamus etc control many of these functions and help co-ordinate them. I also think this is the reason why there will be no one hit wonder but more of a number of treatments are going to be needed to treat this dam thing.
I'd love to be able to function for 90 minutes.
I know what you mean about the other variables that keep life messed up. It's funny how our brain often will deny what our body tells it, that it's time to regenerate, that the energy is used up ... If you are able to tune in to, and obey, your body's inner warning system, that is the best.
Agreed. I don't think there is any one hit wonder either. The more pieces of the ME/CFS puzzle we can put properly in place, the better off we'll be.
I sympathize. It's been awhile for me but I remember what that is like. I'd take the basic premise of the ultradian rhythm and cut it up to suit me. After I'd been in a crash for some time, I would spend maybe a minute or two doing something. Ready to just toss it if I had adverse reactions. Any increase would be no more than a minute or so at a time, and increases would never happen one day after another.
But when I was really sick, such things were the furthest thing from my (non)mind. Then I did the only thing I could do. Rest. Sleep. Breathe.
There's an ME/CFS saying I heard somewhere -- Why stand when you can sit? Why sit when you can lie down? That was my motto for many years. It had to be. So why feel embarrassed about it -- embrace the truth and do what works, right?
Don't ever try anything just because somebody else (eg. me) suggests it. Even good things can be poison in the wrong setting. Leave it all for later.
Thanks for the kind reply Jody. It sounds like you are using a resting method comparable to the old 15 minutes activity then 45 minutes rest regime but with a much longer activity and much shorter resting period.
Even at my most active (well for the last 20 years anyway) I've never been able to have an activity period that is longer than the resting period.
Glad you found something that works for you.
I hope the day comes that it will happen for you as well.
Thank you, Jody, for a very helpful article and reminder. I want to try to keep my head above water enough to be disciplined like this, following the inner cues (which I have but usually ignore). Now in my "declining years" with ME, I find I am becoming more compulsive. My guess is that this is the brain's back up system for motivation. It comes from my desire to be efficient, productive and competent. I want to be normal and get things done! So I bypass those signals telling me to stop an activity, to rest, slow down or do something else. I go with the warrior ethic, the strong, persevering ethic I was schooled in, and as we know, end up hurting myself. Then, seriously out of balance, I make some other messed up judgment or decision. Until I rest enough, this is what happens. I have also had accidents and injuries as a result of pushing. You'd think I could learn. Well, this community talk and discussion really helps. Because to bring all this into a social context for ourselves makes our issue and need much more solid and real. Thank you again!
Along with this rhythm of rest and activity, there is another way to combine the two which I actually do, and which helps me get by. I let my brain slow down and be dreamlike with whatever I can during the day, coming alert only as necessary. I have learned to do this floating drift. It was frightening to be like this when I first got ME, to be half asleep during the day, but gradually I adapted to it. Maybe it is analogous to becoming a fish swimming in the sea instead of some bright, alert land animal! People have told me I am so calm and peaceful. That is not how I would describe myself, but they are seeing the quiet, slow brain pace I operate in much of the time. What wears me out fast is when I have to keep up with normal to fast, or intense people and conversation. I can only do normal speeds for short periods.
I know, it's not easy to go against everything we learned before we got sick. It's hard to slow down when everything else is going full tilt in the world. I think too -- at least it was this way for me -- I had become so let down and disgusted with my body for its failure to function that I did not respect what it told me and did not want to listen to it. As if it were a lazy irresponsible child giving me excuses for why it should not or could not do what they were told.
I understand the warrior thing, I have had to unlearn, or perhaps re-structure that as well. The wise soldier knows when it cannot win. The soldier who is also a survivor knows when to cut losses and retreat -- in order to be able to fight another day.
Disciplined resting is something that I have had to learn and relearn ... and relearn ... One of the reasons it's important to talk about, I think, is that it can be hard to do, and to keep on doing. So even though we all know basically the same thing -- that we need more rest than anyone else and if we don't have it we get sicker -- it's important to keep talking about it, so we can start, or keep on, doing it.
In your second post you describe the half life that is so much a part of this illness. My son at almost 23 has been there for a number of years. I was there, but have been able to emerge.
I still do most things slower than the average person, slower than I did before illness. A neighbour told me once that when she and her husband would go for their fast-paced walks, they would occasionally see me also out for a walk. (This was during a time when I was exercising 45 min. a day and taking two 45 min. walks daily with no problem, a few years ago. I am not up to that at present.)
She described my pace as "leisurely". She hadn't known that I was sick. Now that I had told her she realized it was not so much leisure as trying to conserve energy.
One of my daughters has always been a high energy person and when she was a teenager, and I was in my worst health, being with her was exhausting. I would have to bow out because I couldn't even think fast enough to keep up with stuff she would tell me about from her day ... let alone do it.
One of my docs called it "re-writing the script"
Sounds like a smart doc.
Awesome reply, Jody! I am going to copy your general thoughts from the first half and post them where they are visible. Especially your continuing on with the warrior analogy--going from a warrior to a wise soldier. I also definitely relate to the feeling of being disgusted with my body for not functioning well. It is challenging to learn that we can't replace what is real with wishful thinking, but need to accept what is real and "work with that". I won't even say, "Do our best", because that goes into the perfectionism which leads right straight back to discouragement.
It must have been so tough having teenagers and a family when you were struggling so. You are a hero in my mind.
Well ... thanks. I'm glad it struck a chord for you. I'm touched.
It was tough having kids around in some ways. In other ways they were like a rope to hang onto, preventing me from slipping further down. They were company without having to go out (which i could not have done) and their energy and youthful optimism rubbed off on me somewhat as well. Of course they also were exhausting. But that's kids for ya.
Congrats, you do have a sense for comedy. Your article made me laugh out loud although we all know there's nothing funny about being a prisoner of our own body. I don't know how long I can still accept the fact my body is not getting better. I'm very lucky however. Years ago I was even unable to turn myself around in my bed or walk to the bathroom next door. I can drive a car now and type this message. Things have improved. And still there is the invisible wall, the damage inside that sets our limits. I listen to my body, don't push till it crashes, sleep when I feel like. I put the clock not to ruin my nights. But I don't know if I can live this life for the rest of my life.
Jody, I know what you mean with the kids.....they gave me love, laughter, and a sense of purpose. My girls saved my life through those most difficult times. We can endure any how, as long as we have a why.
Your articles are always spot-on, Jody! Thanks for another one. It just really puts life into perspective to read of others' struggles and their moments of success within the struggle.
Back years ago when I was a single mom with two kids at home and a mortgage to stay up with, pacing like this is the only thing that kept me going with working. I would work for an hour or two, then rest, work for an hour or two, then rest. If this is a "real" rhythm, which I'm sure it is, it sure explains a lot. Sure wish I'd kept my business open, but life happens.
Ditto about kids... those years, having kids to get up to and come home to at the end of my work day kept me going. I had to keep up with them. It just goes that way. My motto with teens is listen to them, and make them laugh, every day -- and when it's tough for them, it will be you they talk to. This paid off.
My one regret for that time period is that I didn't really ever tell them I was ill. No one else believed it, so I kept my activity level at a level I could handle without really showing how badly I was hitting a wall occasionally.
Now I'm an empty nester. Life itself seems empty sometimes. I have to agree with the above: We can endure any how and any what, as well, as long as we have a why.
I find this as important as the resting. When I first tried pacing, I would go as fast as I could during my active period. I have found that if I move at a moderate pace when I am active, I can do more before I have to stop and rest. Heeding when I need to stop and rest can still be a problem.
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