Happy Anniversary?

[Mai45]

On 2 July last year, very newly widowed, downsizing and moving house I had 2 days to paint bedroom walls before the carpets were fitted. My diary records "what a day to come down with what feels like flu... Exhausted". The next day's entry reads "never felt so tired, and can't seem to lift the boxes I packed on Monday".

And so it started... Got progressively worse until I thought I was heading for permanent disability. In December I finally had a diagnosis of PMR, and took my first, magical dose of Pred.

So a year on and down to 7.5mg, I'm still very much a beginner compared to most of you, but these are the main lessons I've learned;

1. Yes, Pred has side effects but compared to how I was before I was prescribed them, I reckon they're well worth taking.

2. Stop trying to kid myself I'm some sort of SuperGran, let alone SuperWoman. I'm not (can't fly for a start). Pacing does not sound an attractive activity but like death and taxes, to paraphrase Benjamin Franklin, it has to be done. Harder than it sounds to learn to say "Sorry but No" - definitely need to practice.

3. Invest in (a) wax or lady shave. The hair on your head may thin, but Mother Nature compensates by giving you lovely thick black hairs on your upper lip instead. Thanks a bunch, Mother Nature, just what I always wanted (not). And (b) in the early days you will also need a chisel. You will already be eating everything that isn't nailed down - the chisel is for the rest.

4. Be grateful if you get a good GP. Mine controls my dosage reduction and only gives me 4 or 6 weeks at a time so I have no flexibility, but I'm not on my own, I have regular blood tests, regular consultations and she listens to me before deciding. I'm aware that's not everyone's experience.

7. Finally, and this is THE most important, keep reading these posts. Even with a good GP they have little time to explain odd symptoms and detail. This is where I've learnt the most. To Dorset Lady, PMR Pro, Sheffield Jane, Celtic and so so many more, thank you. I wish could name you all, I've learnt so much from all of you.

Here's to Year 2!

[DorsetLady PMRGCAuk volunteer]

Hi Mai45,

Well done you. Coping with PMR as well as the first year of bereavement is no mean feat, I know.

Having a good GP helps, so does a sense of humour, but most of all a loving family gets you through almost anything. I'm sure you are a SuperGran to those who matter!

Take care, and happier days for you.

[Ronswife]

Good to hear from you as my PMR hit in late May and I was in bed in severe pain for 2 months before I could see an Ra here in the USA. At just below 6 mg it flared again. Beware of lower dosages and maintain.

[Marilyn1959]

What a fabulous upbeat post! Thanks for sharing lessons learned in Year 1. Love the Lady Shave advice in particular, never thought of that little gem! Definitely need the chisel too!

Good Luck in Year 2, hope the 7.5 becomes 0.0

[PMRpro Ambassador]

Well done for learning the hardest lessons so quickly!

I had about 9 months on Medrol (methyl prednisolone) and put on a load of weight and grew a black beard! I was so grateful for my Braun epilator (other brands are available I believe). Prednisolone and prednisone are fine. Didn't need the chisel though - I ate with undiagnosed PMR, comfort eating, but as soon as I started pred, that went.

[SheffieldJane]

Hi Mai45, you really sound on top of things, I recognise all your insights about life with PMR. You did all that with all the extreme stressors life can throw at you. Hats off to you!👒

[Janll]

Dear Mai45, Cheers! May the next year go smoothly for you and bring only good surprises and blessings. I don't suppose you live just around the corner from me. I'd like to sit and chat and meet you.

Jan ( Weston super Mare, UK)

[PMRpro Ambassador in reply to Janll]

Careful - you might meet markbenjamin57!!!!

[Hidden]

Wondered why my 1970s style black 'stache and sideburns came from..

[PMRpro Ambassador in reply to Hidden]

Yup - when you draw the shortest straw! No problem on either sort of pred, just methylpred.

[Mai45]

Thank you, everyone, for such lovely comments. Reading them though, I think I may have given the wrong impression. After just one year, I'm constantly learning and discovering - mainly from here - and no more on top of this than anyone else. I get so flipping tired! I've stopped trying to explain PMR to anyone as the invariable reaction is "Oh yes, I get that as well"

Brain fog leaves me constantly coming out with the wrong words. On a good day I sound a bit like the brilliant and much missed Victoria Wood's Bren from Dinner Ladies. On a bad day I make Mrs Malaprop look erudite.

Dorset Lady is right - it's family that matter most and doing the school run 3 days a week for grandsons who think I'm quite nice but a bit mad is probably what keeps me sane(ish). Jan, lovely idea but unfortunately I'm nowhere near WSM.

Thank you again, everyone, for all I've learned here and will continue to learn, and to paraphrase Strictly - keep chiselling! (And/or shaving... Your choice)

[1Purplecrow]

Congratulations! Personal accomplishments count when we are dealing with Life! And you sound like Super Woman to me! Kind regards, Jerri

[Jackoh]

Love your sense of humour- it certainly helps with GCA /PMR !

X Jackie

[Elaine-W]

How did we manage to assemble this group of thoughtful and caring people. New members appear and slip into our comfortable ever growing family.

Everyone is prepared to open up and share experiences for us all to learn from.

Thank you for sharing your story and I wish you well x

[skibarski2]

Amen to the appreciation of the wonderful people here that like you, have been a god send to all of us with their expertise, I have said it before but will repeat it often, without them, I would not have had a clue as to what to expect, from my GP. Or from this condition itself. So yes, Thank You ladies one & all named above, to which I shall add Piglette as she is also. Source of wonderful information...

Kate x