...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Pacing – Keeping the Beat

7/21/2015

5 Comments

 
Picture© 2015 TSM


I was recently playing drums with a small group of less experienced drummers and what started with a base rhythm devolved into a less than pleasant cacophony of noise.  If you’ve ever sat in on a drum circle, you know exactly what I mean.  To solve this problem, the leader needs to lay down a basic simple beat and hold it.  It gives everyone a point of reference to play off of and to return to and it keeps the group cohesive.  Experienced drummers already know this and learners usually pick it up when the leader points it out.  When you’re struggling with SEID/CFS, there’s no leader to set the basic beat.

When a large mother drum is present, several people sit around it and hold down a beat – sometimes it’s a heartbeat.  It sounds like an actual heart beating – boom, boom, pause.  Boom, boom, pause.  Just like the line you’d see scrolling across the screen of a cardiac monitor.  Two peaks followed by a flatter line.  It’s all about the underlying rhythm - the natural pacemaker.

Unfortunately for SEID/CFS patients, it’s a challenge to keep the basic beat – the pace that will consistently get us from day to day without being caught up in a push/crash cycle.  It’s a matter of fine tuning.  Collect data, make observations, find successful patterns – Repeat.  Repeat, Repeat, Pause.  Repeat, Repeat, Pause.  And eventually Repeat your way back to health.

How do you pace to a basic beat?  What strategies have worked for you?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

5 Comments
Tim Boland
7/26/2015 08:38:41 am

Thank you Martha for this week’s column, I appreciate how you so often describe every day experience and how it relates to us managing and recovering from our ‘symptoms’. I say symptoms because ultimately it is about finding for ourselves the root causes, those things which tend to trigger our symptoms and make us feel worse.

I am currently working on a rental home and getting it ready, and honestly overdid it yesterday, so I pared my work back significantly today and just let my painter do the painting rather than me chipping in, much as I enjoy interior painting.

How about this for an analogy. When painting, first we need to prep the walls, then we need to cut in carefully to the corners to get an accurate and attractive job, then finally to painting the walls. It is a process that really cannot be hurried too much, as hurrying brings mediocre to poor results. It takes special care and attention.

And in the end of the patient and caring process, a fine result appears. And like with this illness, ‘taking it easy’ as our bodies often will tell us when we are overdoing it - I clearly felt it yesterday as the day progressed and I felt quite tired and my body progressively felt more sore and uncomfortable.

A little activity, rest, repeat. Sleep. Eat well. Follow the suggestions of Martha’s book.

Reply
Martha
7/26/2015 04:06:00 pm

Tim, your painting analogy is on target. I've seen walls that were painted without the care you describe! And when struggling with SEID/CFS the stakes are so much higher than having a nicely painted wall. Repeat, repeat, pause. Thanks Tim!

Reply
Andrea link
7/27/2015 02:33:40 pm

I am currently in a predicament where I have a group of friends who are meeting at night mid week for a get together. It started in March and they are very supportive of my health and understanding. They asked if I'd like to come. However, during the years I've had this illness, I've learnt that no matter what I do to try and tweak the situation....going out at night mid week never ever works for me. Can anyone else relate? Even if I leave by 8.30pm, I am drugged on meds for sleep, and when I get home, I find I am so 'wired' in my brain that I simply cannot get to sleep. Then I have a bad night's sleep and spend the rest of the week paying for it. I find it's a bit better going out on a weekend night as I have the chance to sleep in the next day a bit if needed. I am at the point of thinking I need to make the decision that going to a nightly mid week group is never going to work for me and it is causing me stress even thinking each week that I'm going to have to go out when my body is screaming at me to stay home and wind down. Sleeps during the day have never worked for me. But if I stay at home each night and wind down, my sleep isn't overly bad. It's hard to get in a good cycle of repeating something if it's interrupted with something like going against what my body needs. It's so hard to miss out but sometimes perhaps making the decision that something just isn't working is the best thing to do to remove the stress.

Reply
Martha
7/27/2015 03:21:20 pm

Andrea, you describe a situation which is common with SEID/CFS patients: an activity which has a proven track record for triggering a setback but also feeds our aching need for connection. What do we choose? If possible you might think about joining the group only once a month and planning carefully for the day of and the day after. Let us know how you do. Thanks!

Reply
Andrea link
7/27/2015 03:44:16 pm

Thanks so much Martha, that is very wise. Absolutely it is a situation for me that has a proven track record to triggering a setback. Maybe I could even go once every three weeks or something to that effect. Or perhaps make the decision that I 'probably' won't be able to attend the group (to take away the mental stress) but then to commit to going if things seem to be working out that week. I've found over the years that people can't relate to why I can't go out at night....they think it must be because by then I'm just so fatigued. When actually, it isn't that at all. More that my brain gets overstimulated and then sleep is near impossible.


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    Hello,  I'm
    Martha Kilcoyne

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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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