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Pacing in chronic illness - some useful links that explain it and how to do it

Posted , 15 users are following.

EileenH
EileenH

I hope the moderator will allow this post with its links but they are very appropriate in GCA and PMR especially as one of the difficult aspects of both is the chronic fatigue that the medication cannot and does not address. That is something we must do ourselves by lifestyle and attitude adjustments - one thing that rarely works is to work it out by exercise. Although exercise is very useful in PMR and very probably does improve the disease state, increases must be adapted to suit the individual patient and to ensure not causing a "boom and bust" state where you feel good and do a lot only to become excessively fatigued as a result. Then you rest a lot - and start it all over again. By pacing you can enjoy a much more even lifestyle and know that you can plan to do something and have a fairly good chance of it being successful.

Every month on the Lupus UK forum they publish a "topic of the month". This month it is about going on holiday - and how to enjoy it! One of their points is about pacing yourself so you don't run out of steam - important any time when you have a chronic condition, not just on holiday. They include these two links. They weren't aimed at PMR and GCA patients but the concept is the same - and they are well worth reading:

To learn more about pacing techniques and how to apply them, here are a couple of great resources available online;

South Devon Healthcare’s Patient Guide, ‘What is Pacing?’ – http://www.torbayandsouthdevon.nhs.uk/uploads/24053.pdf

Action for M.E.’s booklet, ‘Pacing for people with M.E.’ – https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

The second is particularly good - even if it is designed for ME or chronic fatigue syndrome, we too suffer chronic fatigue due to an autoimmune cause. Dealing with it is no different whatever the illness concerned.

11 likes, 24 replies

24 Replies

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  • LayneTX
    LayneTX EileenH

    Posted

    Wow that's a lot of info! But yes, it's pretty darn good. Thanks Eileen!
  • iellen32
    iellen32 EileenH

    Posted

    Thank you so much , EileenH, for the info which I will bookmark.
  • julian.
    julian. EileenH

    Posted

    I had a previous, 5 year long brush with chronic back pain (and op) around 1990. Not given a name but basically similar finding ways of not running out of steam, doing things differently, and knowing that simply putting one foot in front of the other meant little left over for thinking (which was important as that's how I earned my money).

    I also have chronic headaches which have waxed and wained over the years.

    I'm not into exercise for the sake of it. I get bored in a gym. I tend to think more of being fit. We (as in the project I worked on) had some understanding of the connection between being physically fit and getting through the general stress of life, the project stress, and simply thinking more clearly. Sufficient to provide gym membership and see the effect for normal people in the project.

    Its noticeable that different people have different energy levels. In the context of this discussion different baselines. Even without illness. I always had to pace myself, both mentally and physically. I can't run for the life of me, but I can spend all day walking in mountains, at my pace.

    One of the difficult things of any chronic illness is that we have to find a new baseline. We have to change to accommodate the gremlins. A trap may be to assume that the baseline is fixed. It can be difficult to escape from "I'm ill therefore I can't ...".

    What am I trying to say? My experience is that simply being pysically fitter raises my tolerance of chronic illness, pain and fatigue. Its like going to the shop and buying more spoons. It raises the level at which I function.

    Exercise may or may not have a direct effect on pmr - though I suspect simply increased blood flow probably does. But exercise is part of being fitter which has all sorts of nice general flow on effects for general energy levels.

    I'm not very methodical about pacing. I tend not to think too much about it these days. Its just something I do. And if I find myself hitting a wall more frequently I fine tune how I'm doing things and what I'm doing.

  • linda17563
    linda17563 EileenH

    Posted

    Wow, your posting brought back some memories!  I got ME/Fibro in 1989 and joined the ME Association.....(still in it ) the pacing guide has come up many times and is normally published in the mag, or online.  Myself, I have never found it easy, had tried charts etc...

    .I always wake up (till PMR raised it`s ugly head) with more energy (which isn`t much anyway!) than later in the day.....but for some...especially those that have never had this type of illness before, (PMR) without other muscle complications, it would be very helpful....

    I have always prepared the meal for evening in the morning....so at least we will eat later!.....

    Strangely enough, I seem to  "pay the price" 24hours later if I have to go out etc, use muscles.....never been able to work that one out.....Yes, I`ve done boom and bust....knowing it`s going to happen, but had no choice!

    Thanks for the memories Eileen...

     

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