I need your help with pacing!

Abrin

Well-Known Member
I suck at pacing.

I know that I am just making it worse for myself when I don't rest but I really have a hard time with pacing. I just never seem to be able to force myself into taking regular breaks so I am always in a boom and bust cycle.

I plead, beg and make deals with myself that I will only do '5 more minutes of work' but whenever that self-made deadline ends I always end up telling myself...."No, no.....just five MORE minutes."

And the next thing I know it is hours later and I feel like I've been run over by a truck.

Does anyone have any tips, advice or support? I am driving myself crazy in a cycle of where I never rest enough and then when I finally force myself to rest I spend that time mentally beating myself up for not resting more. :(
 

JennyJenny

Well-Known Member
Yes. If you don't care for yourself you most likely will disable yourself. It happened to me because no one was telling me that I had a disease because I had not been diagnosed and when I was they were not clear as to how this was disabling people and at times even causing their deaths. I got all the wrong advice in the world.

Just think about ending up with no one being able to care for you which is how many of us end up. And if you get bed bound without anyone to help you imagine what will happen to you.

In the UK and other parts of Europe they are putting us in Psych wards. I imagine it is psych wards, nursing homes and the streets here in the US. And I really wish someone had been that direct with me.
 

Abrin

Well-Known Member
Yes. If you don't care for yourself you most likely will disable yourself. It happened to me because no one was telling me that I had a disease because I had not been diagnosed and when I was they were not clear as to how this was disabling people and at times even causing their deaths. I got all the wrong advice in the world.

Just think about ending up with no one being able to care for you which is how many of us end up. And if you get bed bound without anyone to help you imagine what will happen to you.

In the UK and other parts of Europe they are putting us in Psych wards. I imagine it is psych wards, nursing homes and the streets here in the US. And I really wish someone had been that direct with me.
I think a huge part of my problem with pacing is that I've been this way almost the entirety of my life....I can not remember a time that I did not have it so I really don't have anything to compare it too. I was on a psych ward in my teens and throughout the years I've gone through relapsing and have become bed-bound and then 'better' again so I can walk to the store and do a few hours of errands.

I guess it is hard for me convince myself that the pacing actually does anything.....if that makes sense, even though I know better that it does when the boom and bust cycle is all I've really known.

I am so sorry that no one was as direct with you as you have been with me. It hurts my heart to know that you could of been less sick if you had only been born in a different time with better information. (*gentle hugs*)
 

ScottTriGuy

Active Member
I suck at pacing. ...
Change is effin' hard.

Many folks find an 'activity diary' helpful, easy to find on the interweb - each hour (or less) you describe your activity in a word or two (sitting, walk 10min, etc) - this increases awareness, and that's the first step to change!

Another effective strategy is to intentionally reward yourself for stopping short before PEM will be triggered. Awards are best if kept simple and something you can do in the moment. I give myself 3 pats on back while saying "Good job Scott".

Good luck!
 

Abrin

Well-Known Member
Change is effin' hard.

Many folks find an 'activity diary' helpful, easy to find on the interweb - each hour (or less) you describe your activity in a word or two (sitting, walk 10min, etc) - this increases awareness, and that's the first step to change!

Another effective strategy is to intentionally reward yourself for stopping short before PEM will be triggered. Awards are best if kept simple and something you can do in the moment. I give myself 3 pats on back while saying "Good job Scott".

Good luck!
Thank you so much for your kind reply.

I've been using the free tool found at toggl.com to keep track of my daily tasks. It is really neat because it can actually add up how much time you spend a day on things. It really helps me figure out how much time I really spend doing things like surfing on my computer.

I will definitely try out your reward strategy. Thanks so much for the tip!
 

San Diego

Well-Known Member
I wonder if we don’t all learn the hard way. ME/CFS defies all prior experience and human nature.

Even if I’d been told of the dire consequences early on, I’m not sure I could have comprehended or listened. I was different. I knew more. I was stronger. I was a fighter. Once I was officially diagnosed, I still didn’t believe total disability could happen to me. I thought I could dig my way out.

And so it came to pass, that I pushed relentlessly and became bed bound for nearly a year and now alternate between bed bound and housebound. If I could go back, I’d like to think I would learn to be content with less rather than always pushing for more until I was incapacitated and lost everything.

Regardless, the best advice I heard was to give up the notion of finishing. That is, the minute you feel crappy, you stop and rest. No more “5 more minutes” or “I’ll just finish this”. I’m better about that, but far from perfect.
 

JennyJenny

Well-Known Member
I wonder if we don’t all learn the hard way. ME/CFS defies all prior experience and human nature.
Very true.
The "Invisible Illness" Palo Alto article and video was a wake up call even for me and I am disabled and have been all but bed bound a couple of times and all but housebound now. But I know that being bed bound or in a wheelchair is one stupid push away. And now one of the stars of Forgotten Plague has just become bed bound and possibly due to no fault of his own and the disease just took him down.

I think these docs are very important for the world and us. Visuals do make a big difference in what people think about this illness.
 

San Diego

Well-Known Member
Very true.
The "Invisible Illness" Palo Alto article and video was a wake up call even for me and I am disabled and have been all but bed bound a couple of times and all but housebound now. But I know that being bed bound or in a wheelchair is one stupid push away. And now one of the stars of Forgotten Plague has just become bed bound and possibly due to no fault of his own and the disease just took him down.

I think these docs are very important for the world and us. Visuals do make a big difference in what people think about this illness.
Sorry you are struggling, too. It’s scary once you’ve experienced the dark side of this disease, isn’t it? Once my brain flares (pain, burning, buzzing, etc) I know I’m in trouble and I’d better get down in the dark fast or risk (permanent?) severe consequences.

Wish we could see Forgotten Plague without the $25 donation. Have you seen it? It’s terrible that one of the stars is worse off - unfortunately it’s another great example of how we can end up. :(
 

JennyJenny

Well-Known Member
Sorry you are struggling, too. It’s scary once you’ve experienced the dark side of this disease, isn’t it? Once my brain flares (pain, burning, buzzing, etc) I know I’m in trouble and I’d better get down in the dark fast or risk (permanent?) severe consequences.

Wish we could see Forgotten Plague without the $25 donation. Have you seen it? It’s terrible that one of the stars is worse off - unfortunately it’s another great example of how we can end up. :(
Have not seen it yet. Will get it when it goes to DVD.
 

Hari

Active Member
I think a huge part of my problem with pacing is that I've been this way almost the entirety of my life....I can not remember a time that I did not have it so I really don't have anything to compare it too. I was on a psych ward in my teens and throughout the years I've gone through relapsing and have become bed-bound and then 'better' again so I can walk to the store and do a few hours of errands.
Abrin,

I completely get you on what you said. I traveled the same path in more than one aspect of my life and transformed the same.

1. Physical well being
2. Emotional well being
3. Experience of love, sense of belonging, acceptance

I had no clue until a year ago (end of 2014) how the above experiences were like.

What gave me access to these experiences is my desire and continuously asking my brain to give me those experiences. The result could be called a miracle based on where I was. The miracle happened with consistent education and action towards the goal. While doing so ignoring those conversations and relationships that are counter productive. Being grateful or at least saying thanks to what you have, how ever dire the situation is. And giving thanks to what you might have in the future and start to experience as if you have it right now.

Most importantly when I watch TV or movie I look for a particular facial expression and relate the same to an emotion and tell my brain this is the experience I want, please give me. I have a collection of photos I see from time to time to recall the same. Please see them in this post to get an idea of what am I talking?

The young lady name in the photos is Elizabeth Holmes, youngest woman billionaire. In one photo I see her confidence and get inspired. I tell my brain I want to live with that level of confidence. In the second photo I see her smiling, happy and sense her loving and caring nature. I tell my brain again I want to live with that smile, and give love to everyone in my life. After years of practice now I am living inside these feelings and experiences despite the adversities of my life.

Obviously, my wife and my daughter also played a role. Every time I see them I tell myself how lucky I am to have them in my life and put a smile in my heart. Now that smile became authentic and permanent.

Please see if my above approach makes sense to you.

On pacing: I feel if you can describe what is your current physical activity capability it may be easier to guide you further. For me progressing with pacing (or moderating) is a multidimensional approach, just not timing my physical activity.

Let me give you another example from my life.

As of September 2015 I can work for 10 to 14 hours from home with 1 to 2 hours of rest with no travel. If I do this for entire week I may have to take rest for few days to get back my energy and strength.

Now, my objective is to reach stage where I can work 5 days a week by going to office and be productive, enjoy my time with my wife, daughter and travel around the globe.

To accomplish the goal I need to pace myself or moderate my physical activities, be mentally balance combined with treatment methods I follow. If you have people around you who support emotionally, they support will also play a good role to achieve your goal. In my case I do not. I go by my gut feeling, I do not maintain my activity log.

I took 6 years to reach this ability to work. I have read stories who completely recovered in 18 months from the date of diagnosis.

Please ask me for any clarifications so that I may bale to guide you.

Elizabeth Holmes.jpg
Elizabeth-Holmes - richest young billionaire.jpg


PS: In my culture we have beautiful deities sculptures. Someone explained to me long ago the objective of going to temple and pray everyday is experience the beauty and strength in them, so that we may obtain part of the same. I took it up literally and applied in few other dimensions of my life.

If the brain dos not have the memory or it can not recall, then the brain can not give the push for the required physical activity or emotional experience irrespective of the language used.

Please see my other posts to learn more on what I did to restore my health.
 
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