Pacing - what do you do/how would you describe it?

Sounds coming from outside, especially voices, from apartment neighbors, from traffic (I have to have open windows due to heat) all seem to imply 'threat' and have to be almost actively interpreted by my brain. It impairs me cognitively and physically.

During PEM, sound is even more troublesome. So pacing for me, despite my very mild case, is a necessity. My PEM tends to last 8-10 days.

Pacing means telling myself to be careful and to remember how awful PEM feels.

It is questioning: am I doing too much? how clearly can I think? did I lie down and rest at least once, twice, during the day?

I tend to walk too long as I am able to take a walk outside for 20 minutes several times a week. I get hung up on the fitness thing and my leg muscles will fire upa ton of pain signals and cause PEM before I realize it.

(Hope my mildness doesn't cause offense or hurt to anyone.)

 

The problem with trying to assess the condition and reliability of a possibly faulty brain, using that brain is....lol

I can be completely out of it cognitively and have no clue, until something happens that my brain can't handle, like trying to get a bath and forgetting the way I have pretty much always done it, or even how to drive a sock - until I try and put one on (not that common an occurrence these days) I remain in blissful ignorance that the part of my brain that should know how to do this, and the part that should be able to figure it out from first principles, are non functional.

 

A portable sunlounger/sunbed, ie feet level like in bed, has helped me to visit friends when well enough even before I became severe and need to lie down all the time except trips to loo etc

 

Yeah, I knew I was falling into the water on my cognitive comment. I worry about that I have the beginnings of dementia, can't spell past the first letter of a work, wonder how the most basic of things works as I am trying to do something very routine/minor, etc.

Oh well. Lie down and give the poor head some blood supply.

 

On the rare occasions I physically see people I tend to do the same. In theory I could just say I need to do ....whatever.

In practice, then someone, possibly out of politeness, asks why and then I have to explain and use all the energy I have for the visit on that.

 

I think I covered this in my first blog on Phoenix Rising, called Masks. Its far more common than we care to admit, and society drives us to do this or things get harder for us.

 

I am tempted to have two cards for when I go out with
A) Brief explanation of CFS, and problems I have.
B) Legal threats to the organisation employing the person in question and organisations responsibility under disability law.

Just kidding. I don't go out. (but am still wondering about the above in case of required medical visits)

 

My #1 takeaway is 'fuck normal'. - if something helps you, it doesn't matter. However silly it looks to others, or however much you don't want it to help you, or you should be mentally strong enough to not need it.
For example, some building work which I don't really want to happen is going on a couple of neighbours over.
Currently listening to

https://www.youtube.com/watch?v=DydIK14AvXI

On loop. (Star Trek TNG HD Ambient Engine Noise other enterprise background noises are available)

This (and similar tracks) can mute outside sounds quite a lot.
Finding some comfortable over-ear headphones can be a useful addition.

 

It's a nice idea in theory but, in practice & based on my own experience, I won't carry a card saying I have CFS or ME. Unless I know the person I won't even say I have ME. It's led to aggressive borderline abusive verbal attack. In my case the most notable was actually someone who turned out to be a counsellor working for the NHS!

Now, that's fine if your brain is up to cooperating and you're in the mood for an argument but, when it's a rare and precious escape to the world outside, it's a shame to "waste" it by having to deal with that kind of thing.

 

Exactly. If you're in church, you aren't sitting there looking at everyone else's face, so why should you do it when you're online?

 

Oh wow, this forum has an "export thread" function. My cup runneth over! Most softwares seem to have abandoned the thought that someone might need a nice easy way of saving an entire thread

 

This.
It took us a long time to recognise this.
Adrenaline is a real bummer, perhaps especially if you are a child . Children naturally want to do things- holding them back is difficult, especially when a lot if the " advice" promotes increasing activity.

It is false energy and I think the comparison to T1 diabetes is interesting given that there seem to be general glycolysis issues .

 

I give leaflets -Lauras excellent comic strip illustrating PEM and ME awareness leaflet for public to save explaining to people. Download both from www.mechat.co.uk/db/tips.htm

 

Random thought that I've had, no great insight but I wanted to 'write' it down by posting it.

We are, generally, used to the idea that doing something for our health will mean that we will feel better, and that if we don't feel better then it means it's not working. The fact that continued pacing, if/when we have found our baseline, might only mean that we don't feel worse than we do at our baseline is just one of those counter-intuitive things about it that we have to get our heads around, and is certainly something I can need to be reminded of from time to time.

 

I wonder if that's the result of ME being uncomfortably caught between acute and chronic illness?

With acute illness we generally expect that we have treatment of some sort and get well again.

With chronic illness expectations from treatment are typically different. In some cases there may be a small hope of inducing remission but mostly the aim of treatment is to halt or slow the progression of the disease, to reduce secondary complications and/or to reduce the frequency and severity of flares. Which is what pacing is all about.

If you have MS or lupus for example you know you have it for life. The message from the medical profession and from pretty much everybody else, except from the unavoidable quacks, is consistent: barring a research breakthrough you're going to live with this for life and all we can do is try to make it the least bad possible. That's very difficult to accept but not as difficult as when you have ME.

Because if you have ME there's still a very loud message out there that you can recover. And it's a difficult message to ignore because some people diagnosed with ME do recover - or seem to. Thanks to lack of research we have a long list of unanswered questions about that. Did those people ever have ME or did they have a similar looking but actually different post-viral syndrome? Did they really recover or are they in remission and could relapse any time? I could go on. My main point is that for as long as those questions aren't answered and the recovery message keeps getting repeated many pwME, as well as the people around them, will remain susceptible to an acute illness mindset where treatment equals return to health. Rationally most of us know that's highly improbable but emotionally it's a different story.

 

It's taken a while but we are hoping to put together our pacing podcast very soon. If you have any more comments about pacing please keep them coming as they are all really useful

 

@PhysiosforME Looking forward to your podcast.
Here is the link to one of the pacing guides Trish mentioned. The discussion we had in that thread about the drafts for the guide may be helpful, too.