Thank you so much to everyone who has answered my posts, written their own posts and responded to others. I have learned so much from you all and I don’t feel alone or quite so confused anymore.
It is very early days for me but thanks to you, I am saying no to things and people. I just explain very briefly that I have just had this diagnosis, that I have been warned to pace myself carefully and I am not sure how much I can do. This conserves my energy and also helps with stress.
People have been very understanding and so many know someone who has/had the illness or had it themselves. Of course, I am lucky in that I have several commitments but they probably only add up to a few days a week and I have lots of help.
Thanks to you, I know what sort of questions to ask about my treatment. As I said, it is all early days and I know there will be difficult times ahead but I feel blessed to have such a wonderful support network.
Written by
Dilly-B
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9 Replies
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It really helps having support and knowing what questions to ask. I reckon if someone comes on here for a while and reads a few threads they know as much, if not more about pmrgca than the average GP. Keep going forwards. 🌻
Morning Dilly, Welcome 🌷
On the subject of pacing, keep a tight reign on your diary & never commit to more than one thing a day, even it’s something like having your hair cut, don’t try to do things on the way there or back as that’s what tires you out, well it does me!
I’m currently sticking to my own advice, including changing existing plans, my very best friends are coming to visit next week & l always do a Seasonal High Tea, courtesy of M&S and darling husband but l’ve booked us into an hotel instead, l don’t actually have the strength to even lay the table at the moment........
So adaptation is possibly the Name of The Game.
You’ll find help & advice in all its various guises on here.
Kind Regards
MrsN
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Re your comment on pacing and doing only one thing each day. HOW did you know what I did yesterday??? Was determined to get a haircut. Left the salon and saw the grocery was right there. Only needed a couple of things, so added that to “ to- do” list. Yep, was too much. Price paid for remainder of day.🙁. 🤗
Lovely post! Thank you. I have been on the Forum since early 2016. It has taught me so much, along with some personal research. I have found it pretty cutting edge and unfailingly friendly and supportive. A life saver really. It makes you want to pass it on.
What a thoughtful, lovely post Dilly-B. Glad you are finding the forum supportive and informative. It really is a valuable resource and is soooooo active that someone is always there 24/7. May your journey be as smooth as poss. Good Luck.
This forum has been amazing for me. I've managed to educate myself about this horrid baffling illness and as others have said above, not only know more than the average GP but also the average rheumatologist!
There are times that due to the medical ignorance I've come across, I've not known where to turn next, and people on here have always given me the advice needed to go forward.
I sometimes wonder how people out there who haven't yet found this forum cope, and I've made it my mission to try and spread the word however I can. I always have a PMR leaflet on me for when I come across somebody new who has it, or hear of a friend of a friend who has and get them to pass it on. I've joined the PMRGCAuk charity and encourage others to do so so they can do their bit to support and educate. I want to do some fund-raising for them when I'm a bit fitter as it's such a small charity every £1 helps.
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You all are awesome 
Great improvement. Encouragement gor others.Wondering should start next taper.
Covid, antivirals and steroid doses
What success looks like!
A big thank you to all pmr sufferers who have supported me.
