30 days at 9mg the good news and the bad.

[IdasMum]

Happy to be here, a month in to 9mg. Survived very, very late guests mid awful virus which relented finally relented 10 days ago.

I can feel I am just at the edge of okay.....yet am easily tired, have little stamina, and somewhat achy. Blood results show my inflammation levels are not what they were at 10mg. It's taking me until around 9pm to 'come alive' which is annoying.

The good news is my head feels well, I feel I have my brain back....and my language learning feels back on track (and needs to be). I feel more alert but my body doesn't need lerts!

Tomorrow we've been invited to old French friends for dinner....we've not seen them since I have been ill as even when well an afternoon all in French is/was too much for me. Looking forward to 2 years worth of catching up and not looking forward to the strain of many people, much noise and too much French.

My short term plan is to take 2mgs before bed tonight to give me a kickstart tomorrow, this will be as well as my normal 9mg tomorrow morning.

My longer term plan is to take 10mg Tues/Fri until we have been to UK in mid May and then drop again to totally 9mg. I really need to have more energy and be a little less achy than now.

This little girl is 1 year old today (she got new shoes on Thurs).....we're so looking forward to seeing her in a few weeks. There is a family/friend party going on right now....a small part of me is jealous and a much larger part of me is relieved not be among so many people, my ex husband and too much stimulation. Looking forward to some exclusivity when we go over in May.

[CT-5012]

Beautiful little girl, I like the shoes. Enjoy your visit. 😊

[DorsetLady PMRGCAuk volunteer]

What a beauty!

Enjoy your visit.

[PMRpro Ambassador]

That infection will have caused a lot of it - including the blood markers.

[IdasMum in reply to PMRpro]

I hope you're right (I know you usually are). I could do with another 20% of good stuff to keep me going

[TooSore]

Adorable! Those eyes!

[SheffieldJane]

She’s such a darling that I completely forget your post or what I might have added. Glad you survived your flu and full on guests. I can’t cope with party type things anymore. I go into sensory overload and have to seek out a quiet corner. Je Suis tres fatigue might be useful.

[IdasMum in reply to SheffieldJane]

Yes, it's certainly a sensory overload. It happened to me in Art a couple of weeks ago. Something funny had happened (out of my awareness) and everyone was in fits of giggles....which got louder and louder. It was near the end of the lesson, so my brain was already shutting down. Not sure how I managed to drive home without falling asleep.

Collapsed on the sofa for 45 mins and then all was well again.

Sensory overload is something I have experienced for years in large gatherings.

[SheffieldJane in reply to IdasMum]

I think that if you are introverted by nature, as I am, this happens. With this illness my coping mechanisms don’t seem to work so well. I even find conversation on a busy dining table hard to follow.

The language and art you are studying are such a good idea. I used always to be doing something like that plus voluntary work. Perhaps now the weather is brighter. It is easy to become unnecessarily self limiting - for me I mean.

[IdasMum in reply to SheffieldJane]

Yes, maybe I am an introvert though would never have described me as such until recent years.

As for the art and French I am loving it....it is the best way for me to learn. No formal teaching but just learning as I paint/draw etc.

[Hidden]

Stride out girl!

I understand your concerns. I had a stress this week and am currently at my sister's for family weekend. Woke up 2am and 4am and took extra mg as my thighs and legs stiff for four days and burning after physical activity and woke me at 4am. I can barely communicate in English. Good luck.

[Hidden]

Ahhhhh, she is a JOY!

Hope you are on the road to recovery and the path stays straight and smooth for you!

[Jackoh]

Lovely photo!! Good that you survived guests and virus. Yes it's good sometimes to have an excuse not to do something but also hard when we have to do things and don't feel we can necessarily cope! All a learning experience isn't it? I'm just learning after too long to say to folk that I'm not going to hug them( do like to do this) but fed up with catching viruses. Interesting reactions!!!

[IdasMum]

It went well today. Only 6 if us and a mix of English and French.

I even put eye make-up on! My eyes are so much better recently.

Sadly, our hostesses 75 year old mum, whom we've met and eaten with several times, sounds like she's awaiting a diagnosis for PMR (PPR her in France). I feel so sad for her, at the beginning of this journey, although she was diagnosed with Horton's disease a couple of years ago.

We're going to get together in a week or so for a short afternoon tea visit....hope I can share some support and advice with her, although she is all French and I rarely understand her

Edited after Googling Hortons and realising it's GCA. I had believed that PMR comes before GCA. I wonder if she came off the steroids too soon (in 2 years as far as I am aware) and is actually back in a flare.

[PMRpro Ambassador in reply to IdasMum]

Sometimes the PMR doesn't manifest at the start and the patient is on to high doses pred to manage the GCA quickly which then obliterate the PMR as a symptom. But as the dose for the GCA is reduced it eventually falls below the dose they need to manage the PMR - cue symptoms. There have been several GCA people who developed PMR as they got below 10mg or so. It all just depends which blood vessels are affected.

The Germans do the same sort of thing, calling disorders by the name of the person who described them a hundred years ago rather than the medical name the rest of the world uses this century! Drives me up the wall when I can't look it up there and then...

[IdasMum in reply to PMRpro]

Thanks for that info. Gaelle, her daughter, is not a great resource for info, so have no idea what Pred level she's on although suspect from our conversation she's no longer on steroids. Poor thing.

[PMRpro Ambassador in reply to IdasMum]

Are the French very reticent about illness? Unlike the Germans - who make the Brits look positively amateurish...

[IdasMum in reply to PMRpro]

No lol. We're up to our armpits in pharmacys and they go to the doctor far more readily that us anglais do.

Gaelle has her own agenda, so asking questions and getting answers is quite difficult.

When I see Marie-Claude in next couple of weeks I will question her thorooughly (as much as I am able in French!)

[PMRpro Ambassador in reply to IdasMum]

Mind you - they do adhere to, shall we say, some strange concepts...

I noted yesterday that there are 4 pharmacies within a couple of hundred yards of each other close to the resort. The mind boggles...

[IdasMum in reply to PMRpro]

Our small town, 10 mins away, population ?1200? boasts 2 Pharmacie.

[PMRpro Ambassador in reply to IdasMum]

Yes - but I haven't seen how many more! Though I suppose about half the population here is tourists...

[Suet3942]

What a gorgeous little girl. Why is it that a chubby face looks adorable on a baby/ toddler but on us the moon face looks ‘orrible!!

[HeronNS in reply to Suet3942]

Remember the Cabbage Patch dolls? When they were popular I remember seeing a woman whose face was just like that of a Cabbage Patch doll. She looked rather sweet, although odd. Now I wonder, was she on steroids? But most people will never be that extreme.

[SheffieldJane in reply to HeronNS]

I have queued at dawn for a Cabbage Patch doll. They created a sort of deliberate shortage and panic buying. Mind you, at least one of them has gone to Australia all these years later, still smells like baby powder.

I find myself spotting steroid affected faces and feeling an immediate warmth towards the person.

[PMRpro Ambassador in reply to SheffieldJane]

Except there are some who are - please excuse the non-PC-ness - simply overweight/obese/plain fat. Either that or more than half the population are on pred...

[HeronNS in reply to PMRpro]

Oh, but don't you think there's a difference between general chubbiness and steroid-caused plump cheeks? Something to do with the way the flesh is distributed.

[PMRpro Ambassador in reply to HeronNS]

That wasn't what I meant - "steroid affectedness" is one thing. Being as overweight as some I have seen this week is a bit different. And the proportion of such is quite mind-boggling!

[Suet3942 in reply to HeronNS]

Yes I agree with you. I’ve often been able to spot a pred face.😊😊

[Suet3942 in reply to PMRpro]

Haha

[SheffieldJane in reply to PMRpro]

😂 that’ll be me then. Seriously sometimes you can tell.

[PMRpro Ambassador in reply to Suet3942]

Conditioning. But I do know people who have been happy with their pred face - no scraggy neck and wrinkles...

[Suet3942 in reply to PMRpro]

True. I do get asked why I’ve not got many wrinkles at my age. Every cloud........

[karools16]

Ooooh! i COULD JUST HUG HER. Precious. x Feel better soon, IdasMum.