Nearly there

[Deneez99]

Was diagnosed with PMR in Oct 2020 and I am down to 1mg. I have the opinion that stress brought it on and with my daughters wedding in 2 weeks time I know its going to trigger stress again. Does anyone have any suggestions please

[DorsetLady PMRGCAuk volunteer]

What in particular is going to trigger stress?

If it’s tasks to be done before or on the day, then you need to delegate to others to take the onus off of you….and plan as much as you can in advance.

Is it other guests at the wedding, not much you can do about that other than steer clear as much as possible….and use someone else as a buffer.

If you feel as the day nears you are going to flare then maybe take an extra mg or two_ but don’t take extra ‘just in case’.

Just enjoy the day as much as you can, building in ‘quiet’periods for yourself….

[Deneez99 in reply to DorsetLady]

Thank you I will try xx

[DorsetLady PMRGCAuk volunteer in reply to Deneez99]

Hope you have a lovely day…..

[SnazzyD]

I think it’ll be affected by how you frame it and regard your role. If you have put pressure on yourself to be the the hostess with the mostest, are key to everything that should make it go well, have taken lots of responsibility I would be a bit worried. If not and you’ve given yourself permission to have rest periods, have delegated everything you can and will soak it all up from your matriarchal throne, then I’d be less concerned.

If your PMR has been quiet all this time that’s reassuring but depending on how you’ve been with your adrenal function that could be the thing that might trip you up. So, watch yourself in the run up to avoid being wrung out before you even get your hat on and pace yourself (!) on the day and assume you might well be exhausted the next day but be overjoyed if you aren’t. To be honest, if it were me, my hand would be hovering over the Pred bottle for a reassuring extra 1mg. If you do, that isn’t foolproof and doesn’t give you the green light to go mad and may not save you if you tear up the dance floor until 1am after running the whole show. It’s not great thinking you need to take to the sidelines with the vapours but you never know, you might actually be better than you think!

[Deneez99 in reply to SnazzyD]

Thank you so much for your advice I wish I was the cool calm collective type but I'm not. Gonna try planning my quiet times during the day. Thanks xx

[Blearyeyed]

You are right , Stress is a key trigger for developing a health issue or getting flares when we have an illness.And you are right , Stress is not just a bad thing . It is an activity , mental or physical , good and fun , or bad and sad, that is too much for our brain and body to cope with at its current level of health.

So a wedding and the arrangements for it can trigger the same flare as a fast deadline at work or another infection.

Although you are in an amazing place in your treatment now and deserve a big part on the back you are still in recovery and will be even after you reach Club Zero for as much as a year because your body is still weaker than it was before PMR and repairing itself to get back to being in a good general state of health.

So for something like a wedding Pacing is key . You will need to step back from as many duties as you might have wanted to do. This is because you will want to be in a condition that you can actually enjoy the day and not trigger a flare which will destroy your good work.

The key is preparing your body and preparing your family and friends for the fact that you can't be running around like a loon doing last minute organisation for the day that is more typical in the role of Mother of the Bride.

Eat simply and nutritionally in the weeks ahead and drink more water. If you don't take one already start a combined vitamin and mineral after your biggest meal of the day. This will help to improve your health in general and can help long term , but it can help you boost your energy before the day.

Try some gentle stretching and the odd stroll if you aren't already doing this so your body is prepared to cope with the extra activity that will inevitably happen on the day and could bring on a flare.

Your role is to prepare You , to get You there and keep You well afterwards , so take it slow organising things like clothes , hair appointments, any packing in the weeks before and delegate other jobs to others like organising their clothes , packing , hair cuts etc.

Try hair cuts and alike the week before with advice from the hairdresser about the easiest way to get your style looking at its best on the day yourself as hours if fiddling about with hair and make up will do you no favours as it feels like a big day out in itself.

If you are staying away pack slowly with rests from the week before and have a few days rest and Me Time before the big " days" themselves. Especially give yourself time for a few hours lie down and a stretch if you must travel a great distance. Get a pill box if you don't have one to organise your pills so you don't forget them.

You may want to be in the middle of things on the morning of the wedding or feel you must check on things. It's possible to be there and create those memories without doing all the practical things. Have a Mother Buddy , I came up with this thought a few weeks ago because my own daughter gets married in August and I am working out ways to cope with it.

Your Mother Buddy can be a practical , fit, friend of yours whom is also invited to the wedding or the most useful bridesmaid .

Their job is to take a list or instructions from you to chase things and people up without bothering your daughter. You can then sit back and relax in the room with your daughter and just enjoy your glass of champagne and watching the dressing and making up show only giving valuable hugs and encouragement to your daughter from a comfy spot.

During the event , rest as much as possible , take a comfy seat or cushions for your chairs . Take a little while away from the noise in a quiet spot on a bed or chair. Use your Mother Buddy or OH to fend off too much activity or unnecessary endless chats . Remind the photographer that there is a person with a physical condition and make sure they plan to do all photos with you in them in order together and without endless preparation so you only need to get up for that once. When you feel enough is enough quietly say your goodbyes to your daughter and go . Rest well for the week after the wedding , don't plan other activities in that week.

Congratulations and pace it easy , Bee

[Deneez99 in reply to Blearyeyed]

Thank you so much that was a lovely read and I will put as much as possible into practice. I wish you well for your wedding in August. Mine is on Feb 13th so very near now xxx