Pacing - a useful resource that has been updated - PMRGCAuk

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Pacing - a useful resource that has been updated

PMRpro profile image
PMRproAmbassador

You will all be familiar with me banging on about pacing and it has just been brought to my notice that one of my links has been updated. Here is the new link to the Action for ME booklet:

actionforme.org.uk/uploads/...

which appears on this respources page on the Action for ME website:

actionforme.org.uk/get-supp...

There are 2 pages and there is a leaflet on working with chronic fatigue.

I realise the label is different - but the effect is the same and so much of what is written there can be applied to us in similar contexts. Managing the fatigue as well as possible is one of the really imporant aspects of living well with any autoimmune illness and, for us with GCA/PMR, the fatigue is often a major factor, especially as we get to lower doses of pred.

22 Replies

Excellent advice and information on pacing .

I’m going to follow it , I like the planner .

The whole booklet rang true actually, we have to get into the mindset that we can’t carry the world , as much as we want to .

I would love a cleaner but everywhere needs a good clean first . Thank you xx

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

I know that feeling! But maybe a present of a firm to do a spring clean and then the cleaner? That was what I was about to do when Covid struck and I was allowed anyone in the house! But it was to be the same person

Greensleeves profile image
Greensleeves in reply to PMRpro

I thought about a one off big clean and explain I haven’t been too well , and then continue with a weekly clean .

It’s the vacuuming , dirty windows and changing the bed !

It would have to be the same person and I’d probably sit in the garden. xx

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

Exactly!

I do manage the bedding - but only because we have used single duvets for years, not a double one. But even so, I change the bedding in steps!

A couple of years ago I bought a Karcher window washer but never got round to using it. Then I found the will - but not the sample pack of cleaner that came with it. I bought a bottle when we were at the shop getting something else - and some weeks later saw my downstairs neighbour using his to clean the display windows on the shop. My windows hadn't been cleaned for 5 years - I hate to think what is in the cleaner but it is amazingly effective, leaves no smears when you do it the way it says (pull the vacuum unit slowly down the window absolutely vertical and straight)! Mine came with a small spray unit for the diluted cleaner with an attached pad - no large arm movements needed, I did one window at a time(they are large but plain) and at the end I felt fine. The YouTube review by some woman is rubbish - you DON'T just use water, of course that won't clean off grease. It didn't leave streaks as some users claim - just a few small areas around the frame that wiped off easily by running a window clothdown the edge. The neighbour had been so impressed he went out and bought the professional one so he can do all his enormous windows in one go.

youtube.com/watch?v=X6IoTFq...

Vacuuming - I have a Roomba but the only downside is I have to move some chairs it gets stuck on and it isn't brillliant on corners ...

Greensleeves profile image
Greensleeves in reply to PMRpro

The Karcher window cleaner looks amazing, even if you put pacing into practice and do one room at a time.

It sounds and looks satisfying .

I’ll order one immediately.

I bought a robotic vacuum cleaner last year, called it Beryl . But like yours it was continually getting stuck or trapped up corners or underneath furniture . I’d say out loud , “for goodness sake Beryl “!

The duvet is something I’ll have to work out . Sometimes I’ve stripped the bed and got into a sleeping bag when I’ve gone to bed and forgotten .

I think all tips and short cuts are extremely helpful.

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

We called ours Mabel. The sat nav is Gladys ...

It is just 2 Ikea Poang chairs, she can't climb over the foot, and the ironing board that I leave in front of the TV because it is heavy! It isn't too bad if I line the dining chairs to separate the room into 2 halves. Hopeless in my husband's room - not a chance in hell there!! Why do men have cables???????? Bedroom and bathroom are OK.

Greensleeves profile image
Greensleeves in reply to PMRpro

I’m sure Gladys has been called a few choice words when she’s taken you up a one way , or dead end .

I met my daughter in Milan whilst she was working in Turin , she’d hired a car to drive from city to city and pick me up from the train station .

We went up a one way and she later received a fine , but the sat nav was too quick . She adapted to the driving there , and I kept my hands over my eyes .

Men’s rooms are filled with their electrical gadgets . There’s even a guitar and huge amp in there, it’s used as a table .

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

A lot of the time we just laughed at her - OH would put it on even though we were going somewhere we'd driven loads of times just so we could find out what crazy way the map would suggest and to see how long it took her to adjust. She has told us to do a u-turn on the motorway ... We'd just bought it and were travelling between our cousins, one in Preston, the other in deepest Dorset. Took us along some tiny back roads - luckily the only giant tractor appeared 50m from an open gateway into a field. But it did a brilliant demo of sorting you out when the instruction happened after the turn ...

Greensleeves profile image
Greensleeves in reply to PMRpro

They are funny things , and seem to enjoy getting you into troublesome situations.

Mischief makers , but the ridiculous thing is , if it directed me into a field, I’d probably go .

Grammy80 profile image
Grammy80 in reply to PMRpro

I just ordered the window vac....for my husband's birthday gift!! He will love the 'gadget' aspect and I'll love the windows. I used to find some of his OCD traits somewhat irritating but under present circumstances they have been very helpful~! 👍🏼👍🏼

HappyDiamonds profile image
HappyDiamonds in reply to PMRpro

Just in case its of interest to anyone who has trouble changing the bed M & S do patterned duvets which don't need a cover, the whole thing goes in to the washing machine, and I think can be tumble dried or dried on the line quite quickly and doesn't need ironing. They have several different togs. I know I have always fought a good fight taking the duvet cover off even when I was fit!

Im lucky enough to have a window cleaner but also have a karcher which is brilliant for the shower too. My vacuum is a cordless dyson handheld as its so much lighter and easy to whip out and do a small clean at a time.

Adapting and accepting is the key I'm afraid and I don't feel at all guilty nowadays about leaving things until I'm up to doing them.

PMRpro profile image
PMRproAmbassador in reply to HappyDiamonds

I have a stick vacuum - but OH's room is awful even with that! I did sort of fancy the smallest Dyson but refuse to buy anything from that man on principle ;)I had a window cleaner in the UK - but they don't have such people here! The windows are designed so you can clean both sides from inside and all mine except one open onto a balcony.

I used to watch my cleaner here changing the duvet cover in seconds - I just could not work out how she did it,

123-go profile image
123-go in reply to HappyDiamonds

Neither do I. Nobody's coming into my house at the moment so who's to see a bit of dust or the little heap of clutter by my side on the sofa which I'll clear up tomorrow....or the day after......🤔

PMRpro profile image
PMRproAmbassador in reply to 123-go

That's just like me!!!!!

jaycee444 profile image
jaycee444 in reply to 123-go

Used to joke that I didn’t worry about regular dusting because when a good layer of dust had gathered I could just roll it up and chuck it in the bin😀. It’s not so much of a joke nowadays though ...... I do dust but I’m certainly not obsessional about it.

123-go profile image
123-go in reply to jaycee444

Exactly as it should be.

Super idea Happy , I’ll have a look on M & S online.

The bed changing is my biggest challenge and it’s wonderful getting into clean bedding.

I’ve got a cordless Shark , but even that hurts my shoulders .

It’s as I pull it back. Plus it’s too tiring. Seriously looking at getting a cleaner now . xx

🤣😁😂 I'm rolling over laughing, thinking of my husband vacuuming the shower walls. When I shower, he always says, "Don't worry about the bathroom; I'll get it." That is because I don't do it 'right,' and he doesn't want to say that! I better keep on the move, or he may vacuum me~! (These things used to really bug me...not anymore...I'm good with that)💖😅

123-go profile image
123-go in reply to Greensleeves

If you cleaned first you wouldn't need the cleaner. 😉🙂

Greensleeves profile image
Greensleeves in reply to 123-go

🤣

This is a fantastic post and guide. Once again you and all who respond....remind me that the things that frustrate me are real issues shared by all....that do have solutions. I'm so grateful to this forum!!! Just yesterday I said that I must work on acceptance and 'spend' my energy wisely. This is wonderful..💖 Truly, with PMRGCAuk....you are not alone!!

Agree with you Grammy . Take care

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