Advice please ahead of an important day

[Jigsawlass]

Hello all, tomorrow I am taking some of my lovely school choir to sing at a Jubilee Tea Party organised by our Community library service . Pre PMR I would have taken this in my stride and adrenaline would have kicked in ! We are the only school performing, our Mayor will be there , so it is quite a big deal . Do I take an extra bit of pred or go with the flow ?

[SnazzyD]

What dose are you on and how are you when you’re not pushing it a bit?

[Jigsawlass in reply to SnazzyD]

I'm on 11mg and I am pretty low on energy a lot of the time, some of that is learning how to pace. When I am not working , I am resting on the whole.

[SnazzyD in reply to Jigsawlass]

On 11mg you should be above the level when your adrenal glands need to work for you as well (to give you cortisol not adrenaline) to make up the shortfall. So, that sort of topping up is not what’s needed here because you are taking more artificial cortisol than the body would normally make. The reason for extra is give yourself an extra buzz provided your PMR pain is under control. The question is, how much would do the trick, who knows? Also, if you did get an extra energy boost, you may find that other faculties escape you like focus and being calm in a stressful situation. My worry is, that if you do it once and manage to successfully hit the sweet spot with positive/negative effects, you’ll be tempted to do it again, because each time there’s a pressing reason to do so. This time it’s the Jubilee and next time it could be something else. My worry is based on previous posts where there is a pattern of over-reaching your energy stores, learning your lesson and doing it again some other way. You have said so yourself, you are learning, so still trying to find a balance as you try to hang on to your career. So my verdict is don’t do it and try to make the day as easy as possible.

Others may disagree.

[jinasc in reply to SnazzyD]

No I don't disagree - you are correct. If the lady can do zilch the previous day and then zilch for the next two days - then that would help. Yo-yoing leads to all sorts problems - you end up taking more pred in the long run.

[Jigsawlass in reply to jinasc]

Heading for a nap right now, and the weekend will be one of resting. We have half term next week so I have a lot of time to do nothing but rest

[Kendrew in reply to jinasc]

I completely agree. I know myself from attending a wedding 4wks ago and a trip into London last Sat that good planning around realistic expectations and plenty of rest before and after the event can mean you're able to do some things without increasing your dose of steroid.

I enjoyed both of these days and have suffered no significant consequences. I'm on 5mg pred.

[jinasc in reply to Kendrew]

Doing well Kendrew 5mg from May 2019 slow but steady. 👍

[Kendrew in reply to jinasc]

Haha!... well if you read my bio, it actually started with quite a rapid taper......until I 'wised up'!! Been a fairly steady taper from 2020 though and going very slowly and carefully at this point. Thankyou....to you and others for all the guidance offered.

[PMRpro Ambassador in reply to Kendrew]

I do remember when we first "met" ...

[Kendrew in reply to PMRpro]

Haha!.... oh dear!🙄 I know I was scared, anxious, angry, and somewhat 'cocky' about how I was going to "get off the steroids asap"! I fear I came across as being quite a know-it-all in one or two posts and that was genuinely borne out of fear. I promise I'm not usually like that! I'm sorry if I came across as rude.

[PMRpro Ambassador in reply to Kendrew]

No, never rude. And that was then - one does expect that one's very experienced rheumy knows what they are doing

[Kendrew in reply to PMRpro]

🙄😄😄 Haha!....Heck, have I learnt a lot since then!

[PMRpro Ambassador in reply to Kendrew]

Hopefully all positive and useful

[Kendrew in reply to PMRpro]

Absolutely.

Knowledge and guidance offered from yourself and certain others to myself (and other PMR/GCA sufferers) has over time built up a bank of knowledge and reliable information that I can dip into when necessary.

This has enabled me to feel more confident when making choices and decisions and made me feel reassured and secure in the knowledge that they are well thought out and based on sound reasoning & facts.

At present, my condition seems to be reasonably stable and my current 'regime' seems to be working for me. However, I'm not so naive as to think the worst is over and I'm in remission. I know from this forum that things can switch again in an instant and so I'm just happy to live one day at a time.

If (or more probably, when) another 'challenge' emerges, I feel completely safe in the knowledge that there are people here like yourself, to whom I can come to for advice. I know there will be help available here.

I feel like like the learning is on-going. It's not finite and we can't ever say "we know it all". There's always more to discover as our condition evolves.

[PMRpro Ambassador in reply to Kendrew]

Of course there is - I learn or find something new every week

[Kendrew in reply to PMRpro]

I can't believe how naive I was at the beginning! It all seemed so simple! Haha!...around every corner something new could be waiting to upset the equilibrium again but as I said, I just try and learn as I go along.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Oh , you weren’t the only naïve one -steep learning curve for lots of us! 😊

[Kendrew in reply to DorsetLady]

👍👍👍🙂🙂🙂

[Jigsawlass in reply to SnazzyD]

Very sound advice which I shall follow-Thank you. It's all such a steep learning curve!

[jinasc in reply to Jigsawlass]

You will get there, just hang around and ask away.

[herdysheep]

Rest as much as you can before, rest as much as you can after and enjoy it as much as you can!

[Jigsawlass in reply to herdysheep]

I'm now home in bed resting and reflecting. A wonderful afternoon, we walked very slowly to the venue, stopping often . The choir sounded the best I've ever heard, and I've been running choirs for years . The audience were delighted , for many of them this was one of their first visits out of home since Covid so extra special . A weekend of sleep and rest beckons 😴

[DorsetLady PMRGCAuk volunteer in reply to Jigsawlass]

Great to hear it all went well…now relax!💤

[PMRpro Ambassador in reply to Jigsawlass]

Lovely! Now feet up ...

[herdysheep]

Brill. Rest and relax....