“To cease work or movement in order to relax, refresh oneself or recover strength.” As PMRpro recently pointed out, driving the car around is not “REST”, nor is socializing with a friend, or going for a stroll. Doing NOTHING is REST, embrace it😊 your PMR/GCA will thank you!
“REST”...definition: “To cease work or movement in... - PMRGCAuk
“REST”...definition
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Klah
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That is so true and it's the part that non sufferers find hard to grasp. Taking part in an activity that they regard as leisure can be hard work for us.
I am becoming hermit- like. 😕
Me too, quite housebound at times....everything such an effort!
👋 hi over there! X
When I first went on pred, yonks ago, I was like a car with a new engine...or a Mazzeratti....now, like Del boy's 3 wheeler😉.....and that's on good day....
My husband said I was like the Energizer bunny!
So was I! In hind sight I’m learning less is more. We must gratefully accept our slower, more purposeful selves. More thoughtful decisions out of necessity bring more joy. I’m happy to cross the last few things off my shorter to do list. Faster is not always better.
To do or not to do, that is the question......but today, no choice, have to think about how to get in the car to go to hospital for x ray!....hopefully it will be standing up.....or I`m in trouble!........
Thinking about how we used to be when first on Pred, I had been ill for a long while, and it made me sad at what I had been missing, and how life should be, but alas it didn`t last long.......hey-ho....
Good luck with the X Ray...hope you’re comfortable. Glad sadness went away!
Don`t think the X Ray will help my problems really, thanks anyway, I wish it would.....after 6 years of being on pred (started at 15mg with horrendous side affects always) my useless Rheumie now says maybe it`s not PMR, and when I`m down to 5mg he`ll have another think! I am in so much pain/stiffness......his answer.....paracetamol or codeine..... I`m housebound for months on end......
No use trying another rheumy, they all follow the same protocol in my hospital, it`s called arrogance!
Too much suffering not to try another hospital and Dr. Ask Drs, Dorset Lady and PMRPro for recommendations. They know everything.
So sorry you're not doing well. I'm pretty new and hope I'm not in your predicament five years from now. Do the doctors really know what they are doing? I would like to find a rheumatologist who has PMR, could prove to be interesting.
What I can't understand is why we have the initial euphoria of pred giving us our life back yet, a few months on same dose of pred, we get return of symptoms. Does our body just get used to pred and therefore it simply does not respond to the same level of pred over time? Your words above, longtimer, really resonate.
Shame, I wonder just how many people it does resonate with. Bearing g in mind, most people on forums like this are after answers and or advice, just hope there are more people that are dealing with PMR, and steroids without problems!
I think you maybe right, are bodies become accustomed to the dosage of pred so needs more for affect, that is what I have found anyway, or that's how it seems.
Marilyn: By no means everyone has that experience. I'd suspect that maybe some people have a form of PMR that cycles in activity more than others and they may reduce the dose at a point where the activity is relatively low and then it wakes up again so the dose is no longer enough.
And others probably get a bit gungho and start to do more - and when you do too much, PMR will come back and bite you on the bum!
Said something similar to my GP only yesterday! Though not do eloquently😂
Same here! I almost envy newbies, almost,not quite. I can't keep my eyes open today.
So did I...but then I forget, flare🔥 and start all over again!
You are so right and I just figured it out!
I'm quite dreading tomorrow morning, rather than looking forward to it as I normally would, because although I tried to tell my friends Thursday wasn't a good morning for me to meet them for coffee as I have an art class in the afternoon they blithely carried on with their plans and now I'm driving them. I hope they understand when I said we would have to leave to come home at twelve that's what I meant. Not that we would start to get ready to leave at twelve....
Have fun and don’t worry. Eliminating worry relieves stress...the PMR enemy. Laughter with friends is medicine!
I know, Heron. You feel that real friends wouldn't put you under such 'social pressure'. But they don't understand. And then if you don't fit in with their plans you'll just be left out. It's hard. Hope it's gone ok.
It went okay. I was even more exhausted by the end of the day than I'd expected, but a little nap over the newspaper after supper and I'm good to go for a few more hours. Thanks. 
Glad it went ok. I know I have a regular slump between 1:00 p.m. and 4:00 p.m. Then I get a second wind and can have dinner and relax....not a night person!
Actually I ended up with a headache which has lasted through the whole day today, despite painkillers. Have to say my limbs feel great, but my head seems to be swathed in cotton wool. Probably a change in weather, but could also be related to a sweet treat I ate yesterday morning. Should have known better but it was so tempting. And, in the end, not worth it, if it was the headache trigger. Sigh. Spent this afternoon keeping a chair warm babysitting a local art gallery and had even more trouble than usual staying awake. Must have nap this evening so I can then stay awake for one of our few good tv nights, Heartbeat (an old series from UK) and Midsomer Murders (more recent).
I'm not even sure that reading in bed is rest. Books can be so dreadfully heavy. And every couple of minutes you have to turn the page. And eyes get strained. No, reading is hard work!
I'm longing to read the latest Ken Follett, but it's 750 pages long, and I have a hardback copy. I should have waited for the paperback edition, or got it on Kindle. I've even considered pulling it apart at the spine to lessen the weight, but my love of books won't allow it.
Kindle. By all means, Kindle.
Couldn't get through this horrible PMR without my Kindle. I love my books but handling a Kindle is so much easier. Bonus is it doesn't disturb my dear husband either.
You're so right, Soraya. I used to read loads - all my life - but don't manage to read much these days. And if you're a book lover, kindle just won't do.
I am a book lover, books have been my passion since I was 3 years old, well over 60 years. But I love my Kindle. I have a very small flat and live in Italy, Getting English language books is not easy even if I did have room to keep them. I have a couple of hundred on my Kindle and it fits in my handbag
Hmm - food for thought - might give Kindle a try after all!
Ah! ITALY I would never stop eating, drinking wine and looking at the scenery😊
My computer is at the window looking across the village at a mountain. But it doesn't change that much and when you live here 365 days a year - you can't JUST sit and look at it 
Ha! I know what you mean. We used to live in California near the ocean..beautiful! However, after a while I would sometimes whiz down the highway without even looking😟. Guess you need to go away for a week or so and see everything anew😊
I wrote on another forum a few minutes ago that we daundered up to the high valley and across the border to Austria to fill up with winter diesel today. The drive was green (pine trees), gold (larch trees), blue sky and sun - absolutely glorious. The grass is still growing in November and the cows are still grazing as if on the alm in summer. Who wouldn't want to live here? On Sunday they say we may have half a metre of snow on the mountains - reaching down to the valley too. And we have to drive to the other side to near Venice.
Might go the long way round...
Have you tried Audible? It's like the old Books on Tape, only listen on your phone or tablet. Then you don't have to do anything but listen. I listened to a Ken Follett book a while back. Try Audible.co.uk for details.
Thank you! Being deaf, I've ignored all hearing tapes etc but now have a cochlear implant!
How wonderful!!! My husband wears heating aides, so I appreciate how difficult t can be when hearing impaired. A whole new world for you! Yay! 😊
Heavy books are a nightmare 😅I agree. Kindles are great for sleepless nights. It's a shame my eyes want to give up before my brain will go to sleep though.😕
I have the Sleep Phones...a wireless headband with ear pads....it has Bluetooth so I can download 5 or so podcasts from my phone or iPad and I am asleep bfore the 3rd one!!
GG has the answer - KINDLE!!!! Even 750 pages doesn't weigh a lot - takes a bit longer to download, that's all.
I have the Kindle app on my phone. Recently I bought a little tripod that holds it while I read (voraciously)! I cannot hold a book to read anymore because it just hurts too much and even holding my old Kindle or my phone causes pain in my hands. I am so grateful to have found the little tripod because now all I have to do is just flick my finger to turn pages!
I have found reading on iPhone kindle is ideal for me as I can hold the phone in my hand propped up in bed with no problem. Even though I have vision problems I can see the smaller print.
You can alter the size of the print too if you have vision problems.
I envy you. My attention span is comparable to that of my 3 yr. old grandson! Audiobooks, magazines and Netflix work best at this point. On 15 mg Pred so hopefully concentration will improve. Advice please.
May sound crazy but I am using Rosemary oil to improve memory and concentration. Several tests have shown positive results and it cannot harm in any way. I sniff it and rub on skin. It is interesting that I have not seen any info on essential oils on this forum.
There is so much info on usage online
Grammajoy, I've heard this too. There are certain chemicals in essential oils which can act directly on the brain. We have an excellent aromatherapy store near us. They offer classes. I took the first one and developed a headache, so they told me I shouldn't take the other levels. 
But this is where I get several things I use frequently. Rosemary (added to shampoo), lavender and magical jet lag formula, among other things. In Egypt one of the tourist things we were taken to was a place where you could get any perfume in the world that you wanted (they claimed they knew how to replicate anything), or bottles of any essential oil. It was fascinating the way they guided us through a sequence of sniff tests. Didn't get a headache from that experience! It sounded like ancient Egypt was the birthplace of aromatherapy. Fascinating.
I am an avid researcher and will usually try anything that cannot harm. I would use only functional medicine if I could afford it. I am right now reading about PMR and GCA and essential oils. Don't know why I never thought of that earlier🤗
I think it's been tried by others and unfortunately PMR is one of the diseases which cannot be cured, nor properly controlled, by natural substances. An honest aromatherapist or naturopath will admit this. I do agree, however, that these things can help us, improving our wellbeing so we don't need as much pred. Certainly they can help us with pred withdrawal symptoms.
Do check with an expert if you can - even essential oils are sometimes contraindicated. I'm sure you'll have seen something like this:
Have you seen improvement with memory and concentration?
You mean since the Actemra, as relates to tapering of the prednisone?...yes. I compare it to other folks who have tapered the prednisone and noticed improvement in almost everything as you get to a lower dose of prednisone. How does that relate to the effects of the ActemrA killing off the excess iL6 cryotines...??
Sorry, My question was for Grammajoy. I want to know if see saw improvement in memory and concentration sniffing Rosemary oil.
My post went to the wrong spot. Maybe I neeed to sniff Rosemary oil!!!!
Love all these comments and after 3 days digging in the garden, wheelbarrows of mulch, pruning, watering walking up and down a large property (always with something in tow) it's a long walk if you leave your secateurs at the other end of the orchard - I am yes quite EXHAUSTED !!
Last night I ate dinner (I think) and then my partner told me I fell asleep sitting up - missed the whole movie (whatever it was). Today - no pain just fatigue dragging myself around - and I've had enough - tomorrow I'm RESTING - yes truly I am - I might even stay in bed ALL DAY and shout for cups of tea and maybe pancakes !!! Lucky I know to have someone to make them for me and perhaps some valid excuses to have them made !!
But seriously like many of you I was and still am (I think) pretty active in my mid 60's and despite PMR/GCA and waves of fatigue I find it hard to slow down. I still kid myself that I could run rings around many people half my age - but no doubt I'll expire in the garden one day muttering - if not observing some final 'last' words: 'pace pace pace...rest rest rest...'
Cheerio all
Rimmy
Gosh yes I agree with Sheffield Jane I feel like a hermit especially as I have only just moved up North so inclined to relax indoors I so feel I want to be active but unfortunately too much walking finishes me off ! I can't Drive round in my car because I don't know where I am going , yes I have a tom tom but haven't mastered it yet!! I will keep trying
So true! I've had a really busy year (self inflicted) and knew I have definitely overdone things. Finally reaching a plateau with a few days to myself it's been wonderful to do the complete hermit thing. But - and I think we all have a degree of conditioning in this - I still feel a bit sneaky and guilty for turning the alarm off and going back to sleep; for pottering round in pj's and for sitting down sleeping during the day.
The guilt and feeling of lazy self indulgence intensified on Day 2 when my well meaning but maddening neighbour banged on the door to say she hadn't seen me out and about, and caught me looking really scruffy. Saying I was tired cut no ice with a neighbour 10 years or more older than me.
Why oh why are we pre-programmed to feel so guilty? Any ideas?
I suffer from the same thing! The problem is caring what your neighbor thinks!! Important to zero in on the things that are important, worthy of your energy (like your health), and focus on that. I have trained myself for 70 years not to do that...always worried about “appearances”. Not too late to notice what and who is important for you😊 Guilt is wasted energy (I SHOYLD know!). I was raised Catholic...took it to an extreme (no offense to all you good Catholics out there💗). Hope this did not feel like a “lecture”. If it did, it is because I am trying to make it my mantra🙏🏻 P.S. It is good practice to answer the door in your robe, all scruffy....you should have said you were “sick”...maybe even contagious🤧!!
Yes, you may use my post. I appreciate everyone sharing anything that they have found useful😊 Thanks!
Yes yes yes! Esp yr PS. Going to do this fr now on. Thanks for validation!
May I use your post to suggest to PMRers to remember that 'Will' is the conscious brain but 'Power' is in the subconscious brain. We use our subconscious all the time automatically but it can also help us to heal ourselves if we put the info into it. Kate's book briefly mentions Mindfulness (or similar but her book is downstairs and I'm upstairs!). Mindfulness slows the body down making movement easier - it takes practise. Real resting is complete relaxation and is easily obtained. I've learnt these two practises following a minor stroke then major trauma. Is anyone interested?
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