Wedding Mission: I just wanted to share that my... - PMRGCAuk

PMRGCAuk

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Wedding Mission

jevuki profile image
12 Replies

I just wanted to share that my sons wedding went off without a hitch, but I was a wreck and in major pain barely could walk let alone dance. So I stood in the middle of the crowd on the dance floor and bopped upper body to the music. He will only get married once so I pushed and made the best of it. Very fatigued now but am resting and doing everything I need to do. I am at 20mg of Pred and will start dead slow decline.......thank you all for sharing it helps me stay positive.

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jevuki profile image
jevuki
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12 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Well done you. Glad you had an enjoyable, albeit fatiguing time. As you say, once in a lifetime - now you can concentrate on getting YOU better!

I'm sure he appreciated your effort- even if he didn't say so!

PMRpro profile image
PMRproAmbassador

You did better than I did at my daughter's wedding! I sat there at the table wishing I was anywhere else - the music was SO loud and they wouldn't turn their amps down despite being asked. Most people disappeared elsewhere in the building - you'd have thought they might have got the message, but no. I was on crutches - even bopping upper body wasn't an option!

Hope it all settles down quickly and you feel better soon.

violetsnowdrop profile image
violetsnowdrop

I just attended my son's wedding, coupled with my wife's birthday. Everything seemed to be going fine but then I ran out of steam and had an unexpected overnight at the reception hotel. No toothbrush or medication! I couldn't even drive the 25 miles home! I'm going to pace myself a little better at my other son's wedding (April in Paris - and allow for delays when allocating medicine doses).

I agree with PMR Pro on volume of amps and left as soon as I could.

PMRpro profile image
PMRproAmbassador in reply to violetsnowdrop

My bed was upstairs from the venue - but it was actually my daughter (not the wedding one) who used it early! I go NOWHERE, even close to home, without 24 hours medication more than I will need for the planned trip - stuff the toothbrush! But Paris? I'd have at least a week extra!

And next time - I'll have bought very high class earplugs...

SheffieldJane profile image
SheffieldJane

Well done Jevuki!

There is so much to memories and you've made a lovely one. Some things are worth the pain. Good luck with your dead slow reduction,softly softly catchy monkey. 💐

Greensleeves profile image
Greensleeves

Well done for managing to get ready and go . You pay the price but the children come first regardless. A once in a lifetime event and I'm sure it was a magical day for your son. x

jevuki profile image
jevuki

Thank you all yes it was very memorable and worth the suffering I have now but he is my baby and last one to marry after a year of planning I was determined not to let PMR win!

Hope you get better soon so you can start your reduction.

My experience from dead slow at 20 mgs which I just did. I had stayed at 20 until the flare up disappeared as I do not want to go up n down. I was at 7 mgs when it was too much then back to 20 where I had tapered from every two weeks and 20 was where the break thru pains started.

Anyway I did 20 to 17.5 in the slow down and it has been fine. Now I will go to 15. Once I get to 10 I will stay there for a while then do 1 mg at a time.

My advice is don't start until you feel better so you don't have to yo-yo back and forth.

jevuki profile image
jevuki in reply to

Thank you Lin-Calf I had rapid reduced when I had all the teeth issues and went off completely and it was a disaster. I started back at 20 and still don't feel 100% but will wean very very very slowly after about 2 months at 20mg

Maxine-59 profile image
Maxine-59

Well done, you managed to be there, something he will remember and value. xxx

peanuckle profile image
peanuckle

Well done Jevuki: You will have the memories and so will he.

Sallyaches profile image
Sallyaches

Well done, one of the things this horrible illness does is push us to a chair in the corner and isolates us. You stayed right in the middle of things and your memories of this are priceless.

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