PMR - Pretty Miserable Reality Booklet

[piglette]

I don’t know if this booklet on PMR has been mentioned before. It is written by an American OT who got PMR herself. She has also done some lovely cartoons with it she drew herself. You can read it on-line free of charge. I found it really lovely and very funny.

read.bookcreator.com/B0azEx...

[MrsNails]

It’s in FAQ’s & l asked Chris the author’s permission to share. (under PMR)

You must have missed it last time around well but worth sharing again.

healthunlocked.com/pmrgcauk...

[piglette in reply to MrsNails]

I am so sorry. I thought I read everything!! I wonder how I missed it. Chris does say at the end she is happy to share and even supply hard copy. I might give her donation.

[MrsNails in reply to piglette]

Don’t be sorry, better twice than not at all, you usually pick up most things - you may have been have a ‘day off’ 😉It’s good isn’t it & l think it explains things well to someone who doesn’t understand.

[DorsetLady PMRGCAuk volunteer]

Yes…..as MrsNails has confirmed.

[Dochaz]

Brilliant! Thanks for the link. I'm not sure friends/family will feel concerned enough to read it the whole way through. Eyes tend to glaze over when I try to explain what this condition involves. But I thought it was great.

[piglette in reply to Dochaz]

I know the problem!

[tangocharlie in reply to Dochaz]

One of my very first posts on here was something like 'What do you say when people ask you how you are? I wonder if we've had one saying How do you explain this conditin to others, it'd be a great and useful thread if we haven't. My brain is too foggy today to do a search so hoping someone who knows where everything is kept reads this. I tell people it's inflammation of the blood vessels throughout my body but especially the shoulders and hips and brain, tends to make their jaws drop!

[PMRpro Ambassador in reply to tangocharlie]

That was the intention of the NE charity DVD - it hasn't dated and is available online to view.

[Joni21 in reply to Dochaz]

Hi there! I did provide this to my two adult daughters. They have witnessed bad days of PMR as well aware not everyone experiences the same symptoms/side effects…I keep them informed on my journey. This PMR Booklet garnered their response, “OMG, mom! Although your symptoms may not be at that level or severity it’s nice to have something to read as a family member to better understand.” Share it, it may just be a “reality” they finally come to understand and it’s a cute well written little book!

[TheMoaningViolet]

This is lovely. Thank you.

[piglette in reply to TheMoaningViolet]

I thought it was lovely too and I thought the drawings were brilliant. It summed it all up so well.

[ncfaaeos]

What a great overview of how many endure PMR. Thank you so much for sharing.

[Bridge31]

I bought one and had a lovely exchange of emails with the author . Any sales go towards research.

[Mary63]

Fantastic. So pleased to see it as missed it first time round.

[writered]

Wow! My little cavapoo Carly is nestled between my feet and I have missed the dawn window to walk her in a London England heatwave BECAUSE three years into a diagnosis for PMR I am having a flare this time with excruciating shoulder/neck pain. This booklet is going to make the rounds of my impatient young adult sons who still think that if only I tried harder I could beat this thing or at least be on a trajectory going in one positive direction. Thanks piglette for the input on this great community resource.

[piglette in reply to writered]

I love the attacking gremlins.

[Bridge31]

I highlighted all the parts that applied to me but as usual nobody apart from my daughter was really interested. Cursory glance 😔

[Viv54]

Thanks for this, what a great little book x🌷

[PMRpro Ambassador]

Occurs to me it might be a very useful addition to the training they are hoping to set up for GPs - together with Helen Twohig's paper "I suddenly felt I'd aged"

[piglette in reply to PMRpro]

It would be nice if doctors did read it. In my pessimistic way I am not sure I hold up much hope.

[PMRpro Ambassador in reply to piglette]

Me neither! We could try though ...

[piglette in reply to PMRpro]

Never give up.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Me neither -if they don’t read what the experts write, doubt they’d read something from a non-professional.

[PMRpro Ambassador in reply to DorsetLady]

Except - isn't she a physio or something? And Sarah and co would back it, as part of a presentation together with "I suddenly felt I'd aged" it could be quite effective

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not sure whether she is - and if SM approves it then good -Do agree on the HT article …if it helps patients anything’s worth a go.

[PMRpro Ambassador in reply to DorsetLady]

I got it before it was published for an appraisal for some reason. Sure I remember her being something in healthcare.

[MrsNails in reply to PMRpro]

An OT - l think….

[PMRpro Ambassador in reply to MrsNails]

Could be - that rings a bell.

[piglette in reply to PMRpro]

Yes she says she is an OT in the booklet.

[piglette in reply to DorsetLady]

This booklet does have pictures for them though!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

That’s alright then 😊

[PMRpro Ambassador in reply to piglette]

Won't need to be able to read then ...

[Bedwell]

Very good! And funny! Sort of😏😏😏

[MiloCollie]

Thanks piglette that’s made me giggle. The cartoons are hilarious.

[tangocharlie]

Just had a very quick look and it looks really useful and easy to read, I will go back and read it properly later. Although my first thoughts as I was flicking through were 'you need more Pred if you're that stiff, you've tapered too fast or too soon, go back to your doctor!'

[PMRpro Ambassador in reply to tangocharlie]

Funny - that was exactly what I thought the first time a saw it and I felt it was too pessimistic.

[tangocharlie in reply to PMRpro]

I was like her in the cartoons when undiagnosed or on not enough Pred in the early years, but not nowadays since learning everything on here in the last 5 or so years. As you have to tell people every day, you're not relentlessly tapering to zero but trying to find the right dose for your level of inflammation at a particular time. Still very few doctors seem to know that basic principle, as we see in posts from despairing people every day.

[PMRCanada]

Enjoyed this! It’s always nice to learn other people’ stories and the accompanying drawings are totally relatable.

[ZenSense]

I also enjoyed the booklet very much. It hit home in so many ways. Thank you for recommending it.