PMRGCAuk
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Pacing - I'm always on about it in PMR/GCA, here are some tips

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?’ – torbayandsouthdevon.nhs.uk/...

Action for M.E.’s booklet, ‘Pacing for people with M.E.’ – actionforme.org.uk/uploads/...

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Hi

Thanks very interesting

Rose

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PMRPRO after my post today, this could ga e been written for me. I particularly like the M.E one. Even after 5.5yr in still guilty of overdoing it one day and paying the price the next. Excellent article, thankyou x

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Ditto, see my reply - lower! Nuff said🤔

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Eileen

THANK YOU

Your timing couldn't have been better. Leaving for a beach holiday in a few weeks. I'm definitely looking forward to time off of work and long lazy hours in the sun. I'm anxious about the extra work of packing. The beach house we rented has limited supplies. I'll need to bring pots and pans detergent, coffee machine, linens, etc.

I'm so guilty of trying to get a lot find in a short time then resting. Reading the link, it seems I've been doing it all wrong. I suffer from horrible fatigue with this pesky disorder.

I'll pace myself. I have a few weeks to pack bit by bit. Small boxes that will be manageable. Since I find myself so forgetful lately. I'll make lists. :)

Thanks again. You've always got terrific advice. You are truly a blessing to us all.

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Um - when I go on holiday then the kitchen gets left behind! We have a camper van and I am willing to use the BBQ (OH claims he can't work out how to use it) but no more. Breakfast and maybe lunch at the van, main meal restaurant...

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Thank you really helpful

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PMRpro

Thank you so much for sharing your knowledge and resources X

Both of theses links will prove invaluable to many of us, as I am sure we are all guilty of packing too much into an hour, a morning, a day ... because we "feel good" ...

Then regretting it later !

Hopefully your advice/links will make us pace ourselves better and we will enjoy our days, relaxing more when we need to do so. Thank you x

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Found these articles really helpful. Thank you

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Hiya,

Echo what the others have said.

Found out after a weekend with son & family - that a birthday party for a very excited 9 year old (plus 10 yr sister), climbing stairs (I live in a bungalow), driving the equivalent of 100 miles over 4 days - and generally eating and drinking 🍾 more than usual DOES NOT equate to pacing oneself! Much as I enjoyed it at the time, yesterday passed by in a bit of a daze 💤

For all my blathering at others "to pace themselves", did I do that - did I heck!

Just as relevant at 0.5mg as at 15mg. A timely reminder that I'm not there yet😉🙈

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These are really useful articles since they take the concept of 'pacing' and suggest practical methods for how to do it, both psychologically and physically. With illnesses like PMR, I'm sure this is something many of us struggle with: especially at first and when we are used to living a busy, active life!

Also, they introduce a slightly more analytical approach to monitoring the relative severity of symptoms (+/-) against 'load' (again, psychological / physical). It helps to be able to more objectively monitor cause and effect in some form that we can track-back - especially with depleted energy levels. Recording and understanding the patterns is especially useful.

It seems that the main principle is to try to maintain equilibrium (balance) at all levels in our our lives on the journey of PMR, and recognise / avoid the triggers that put negative strain on the mind and body. I totally agree with the idea that even mental activity (e.g. social interaction, thinking, planning) can be tiring. It sounds weird, but on reflection, perfectly natural.

As always, thanks to all for sharing insights and information about the personal (as opposed to pharmaceutical) management of PMR which many busy GPs and specialists either overlook or don't have time to explain.

That's it, exhausted now after writing a couple of paragraphs of 'serious' stuff (what, me?!). Off now for a well-earned, therapeutic stroll around the shops and one my favourite hobbies - bargain hunting ;-)

MB

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Not me to thank really - it's Paul Howard, an administrator on the LupusUK site who did all the work! He puts up some superb posts. But it doesn't matter what chronic disease it is - they are all the same in needing help from us in the form of pacing.

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I wanted to learn from this “Pacing” thing. However, I guess I just naturally have always practiced “Pacing”. I never sleep. At 75 I’ve decided people with sleeping problems go to bed too early. I’m guilty of dozing for a half hour or 2 during one of the 2 TV shows I watch. I work 40 hours a week (stand all day - retail) and never get to even fix dinner till 10pm. I covet my time alone after work. (Facebook, Instagram etc. With 5 kids - have to catch up.) But I’m lucky - when it comes to pacing - I’ve ALWAYS (not just cuz of PMR) read a book, played the piano (not well) skipped the house work in lieu of more important things. I really have 2 jobs more or less, a daughter with Down Syndrome, so I take my breaks!!! The first year into PMR I missed Sunday Mass from Christmas Eve (a former daily communicant) till Ash Wed. But work was a necessity and priority. Doing well (so far). Pacing is GOOD! Laundry is the last priority too.

I’ve enjoyed all your posts and advice and you’re a Saint for all the caring you deliver with your unselfish time to our crazy posts. Thank you for this, and sometimes it’s just good, and reassuring to know, we’re doing things “right”. 🤗

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Thank you!

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